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Kathleen's Journal Archives |
08/31/03 Finally...a chance to get on the computer in utter silence! The first week with the kids back in school was wonderful! I am still (slowly) getting my computer programs re-installed. It's so hard to believe that summer is "officially" over this weekend! Time flies--wherever does it go! Just wanted to wish all a wonderful weekend!
08/25/03 I guess after reading Toadie's journal, I fel the need to write! My own children, though not in college, start school on Tuesday. I cannot wait to get my house scrubbed down and clean again! 3 months of dirt and filth is getting to me! My stepson, age 22, got laid off from work on Friday. He has not been of much help as far as helping me out. I told my husband that we cannot allow him to continue to "sponge" off of us any longer! I love him dearly, but I think he has alot of issues to come to terms with. Any time I tell him I need his help, he just smirks, or has a snide comment to make regarding my physical ailment. Last night, my sister-in-law and her family stopped in for a visit, they are from Massachusettes. It was great to see them. However, several issues were brought up, that his comments revealed alot of hostility and anger. It hurts so bad when a so called family member makes fun of me! I cannot put up with this type of behavior much longer. My job in life is to raise my two boys with a sense of pride, responsibility, self worth, and a understanding that all people need to be respected. This stepson of mine could care less... Life does go on....
08/22/03 My pc crashed over the weekend, so I'm just now geting things back up to speed, including all my bookmarks. I hope all is well with all of you!
08/16/03 Well, today is a bittersweet day for me--my youngest son turned 11 years old today. He had his first sleepover last night...(yawn)! My oldest was wonderful--he took them both outside to play. I was quite proud of him for doing that. My youngest and his friend both have ADHD, and were very excited. Anyone who has been around children with ADHD knows that they can be a challenge. Some ask if I am crazy...heavens no. My oldest did the correct thing by
inviting them to join in his activities!! In addition to helping me get some peace, it made the two feel good to be invited! Hope everyone has a super day!!
08/14/03 I don't know if any of you have experienced a weight gain since your diagnosis, but I have gained 50 pounds!!! Yuck! The once lean and mean body is now fat and mean. I am finding out that the more my anti-depressant meds I take, the fatter I get. But on the positive side, I am regaining my ability to speak my mind again, instead of letting others take over my life where I say "whatever". My attitude about life has changed on a positive note, yet not when it comes to the person I know see in the mirror or in photos. Yesterday, I vowed to renew my love of exercise, and my love of lots of fruits, vegetables, and low fat meals. This is not an easy task, as my family tends to thrive on junk food. But, for everyone's health, they can eat what I prepare, or make themselves something else to eat. As for exercise...no, I can no longer play a long, tough game of racquetball, 5 mile walk/runs are out of the question, as it an hour long regimen of aerobics/weight training. But, yesterday, I got back on that stationary bike, I pedalled 3 miles in 10 minutes, then did my toning/firming exercises, and I felt great! I spent the remainder of my day trying to do move and work those muscles whenever the opportunity existed. I'm trying to focus also on my posture (even though when I stand completely straight, my bosom looks yet even larger!! (laughing) I have found comfort in wearing old, dumpy clothes (the kind you wear when doing cleaning, painting, yard work, etc). I vowed to not only exercise, eat right, and carry my endowment proudly, but to take the time to actually do my hair (rather than the wash and go), as well as the makeup routine. Put on decent clothes, although I only have a handful that still fit! Wish me luck, and I'll keep you all posted...It's a mighty task, but I've got to get a new mental picture of me as I once was. I know that just because of PD, I cannot let it take over the self-image I have now. It's gotta go, because I need to feel that I am worth it! Have a great day all, I'm off to go get on that bike, imaging myself travelling off to seek out a new life!
08/13/03 Another day begins...2 more weeks until school starts! My stepson and his dad had a falling out of sorts. The realistic part of me says it's time to throw him out of the nest, yet the mother in me wants to pull him in closer. I'm hopeful my oldest has learned his lession in taking his school-work seriously. After spending $900 this summer for a tutor so he could go on to 8th grade, I am going to be "on" him like a mosquito (a constant buzz in his ear)! Then I get to the youngest of the three. His neuro changed his meds, so hopefully it will be a great help at school. I still do not know who his aide will be...he needs to be told of changes in advance. Perhaps I'll bug the school again today. I shared some of his work, Dr. recommendations with his teacher (a neighbor) the other day. All of this school stuff just gets me riled up! I really need to get moving on that book for teachers... First, though, I'm going to finish my autobiography. I tend to start projects, then become distracted but other things that need taken care of--yesterday. I've been checking into health care programs, as my insurance coverage from the school district ends in October. Fortunately, though, our garage will be paid off this month, our house will be paid off in January, and my car will be paid off in February. Purchasing health insurance will take up my entire retirement check, so I'm going to have to really pinch pennies then. I'm a believer, though, that God helps those who help themselves. I'm sure somehow, we'll manage, I hope so! The family better get used to one pot meals (soups, stews, etc). I guess if I survived on that growing up, so can they. Have a nice day all...
08/11/03 I've been a bit out of sorts this past week. Just not feeling quite up to par. I do need to let my MDS know that this past week, right before I fall asleep, I have this ever so slight tremor in my jaw. Strange, but true. Two more weeks and my kids head back to school! I am looking forward to the "old routine" that school brings.
I can once again regain my massage therapy, which is long overdue for my dystonia. My stepson, hopefully, will be kept on in his job. He was hired as summer help, but there is the possibilty that he may stay on. If not, he needs to be seeking out a new job now. I called a friend of my husband's yesterday. His son was killed in a car accident when a woman backed her car out in front of him. To make a long story short, the police disclosed to the media the toxicology reports of drugs in his system, without ever notifying this to family members. This poor guy heard it from a friend at lunch time, who had heard it on the radio! Kids today! They don't seem to care what they do to their bodies, they don't seem to care whether they live or die. I'm not speaking of them all, as I know many have their "heads on straight". I know when I was growing up, our generation did it's fair share of partying, but the mind-altering drugs that kids use today was not part of our having a good time. I pray for the youth of today...these will be guiding our future tomorrow...
08/03/03 Last night I attended a 50th birthday/25th wedding anniversary party for my sister and her husband. Her 3 children organized the whole ordeal, and the turn-out was great! The best part was conversing with an old friend who was dxd with MS in 1978. We had a truly delightful reunion. I finally met his wife/carepartner, who was every thing I heard--truly a wonderful, loving woman with a true love for my friend. I've been working on my book on pd, I'm up to Chapter 9-- the year 2000. It has been an interesting process. So, if any of you readers out there know of a book publisher, please let me know.
07/30/03 I've been trying to get caught up on my weeding. What a mess. I'm sore now, guess I'm not as young as once used to be!! I work for only a couple of hours. I have finally "got it"! If I work till I flop, I'm out for several days. So, "slow and steady" is now my mantra (laughing). As my oldest would say, "Mom, you do everything slow!"(lol) Out of the mouths of babes...
07/26/03 Can you believe that I just had my 3 year anniversary of my DBS on the 24th of July! Time flies when you are having fun!!!!!!! In May, I had my first battery replacement. The incision mark is still itchy, but it is working. My surgeon replaced it a couple of months early, but since I live 4 hours away, we decided early is better than running down completely. Medtronic has asked me to be an Activa Ambassador...so, if any of you readers are considering DBS, PLEASE go to http://newhopeforparkinsons.com You can e-mail me from there, and I'll try to answer your questions. I've done roughly a dozen speaking engagements so far, and I'll be speaking at the YOPA conference in Oct. I've discovered that my new vocation in life is to continue to remain a teacher, just working with adults now, not children! I have been very active in YOPD awareness. I have done several tv interviews, newspaper interviews, submiitted news articles, set up a PD information center in my neuro's office, and have been very active in our local support group by arranging speakers, preparing brochures and flyers for our group, and even set up a website. At the Unity Walk in April, I received a certificate of acheivement for being in the top 30 for sponsorship dollars. My support group, being mostly over 60, are quite supportive of my endeavor to raise funds for the various PD groups. Well, I'm off to work on my book now. Take care...
07/22/03 The past year or more, I have been going into various chat room & discussion boards. You folks here have know who I am, what I have gone through. I've bared some of my inner most thoughts and feelings with you. I've received kind, caring comments from you folks. You have made me feel at home here. Is it age, maturity, wisdom that makes this the place I call home? My support group at home consists of mostly older folks, that I have treasured so dearly. I am the youngest in my group, but they have made me feel quite welcome there. Lately, in one of the on-line groups, i have been told to "butt out" and "piss off". I have been called a "hypocrite". This has hurt me deeply, as I expect to be treated with the respect that any human expects when offering an extended hand to help. I am deeply shaken, hurt, and disappointed by this. Having PD gives no one the right to be rude. If this next generation of those with PD acts like this, what are we going to do? I, for one, am embarrassed by the disrespect. I am also concerned how this will affect the young onset PD community. Please forgive my rambling on regarding other groups. It is only a select few who are ruining things for us all...
07/18/03 Good morning!!! Well, I feel my life is beginning to return to normal, what ever that may be. My stepson got a job, my oldest is almost through with his tutorning sessions in reading, and the youngest is finally getting much needed counseling services. I am planning on going to the YOPA conference/walk in Oct. I'll be a speaker there on DBS, and Medtronic will help offset some of my expenses! My husband will be going with me--it has been years since we both got away together. It's my hope that being around so many young onset pd patients, that he hears about the struggle we all face. Well, just touching base with you all...take care.
07/11/03 Another vacation come & gone. I think this may have been our last year. The kids were quite helpful in getting their things picked up and helped load and unload all the stuff to and fro. They cooked their own brakfast and lunch, and dinners we ate out. It's so hard for them to fully comprehend, but they did a wonderful job! The manager of our apartment said he was wondering if we were coming, as he sees from year-to-year my progression of this disease. My 13-yr old had brought school work to do, so that took care of his "I'm bored" syndrome. His tutor alloted him 5 hours of his tutoring sessions for the great job on his work while on vacation. I think this tutoring was a very good idea. She is giving him instant feedback (positive) on all activities. It helps him to see how he is doing--no slacking off allowed. My youngest will be meeting his support aide next week. Her expertise is working with autistic children, so I'm hoping we can work in some sort of family counseling as well. My stepson got a car (used), and a full-time job in a furniture factory. So, we are on a roll here as far as getting things back to "normal", if this could ever be a "normal" family unit! The weeds have just about overtaken my flower beds. It is so hard to keep them under control. I've gotten to the point where I really don't care. My house is dusty and dirty, but even that, why bother? No one else seems to want to help out. I think this weekend, I'll try go get some help. Wish me luck! I already told my hubby he is to take down the curtains so I can wash and iron them. The next task I have for him is to clean out the gutters, as weeeds and trees are growing in them. My kids can help me with the weeding (yeah, right). I've got to be more demanding of my family. Just suggesting does not work! But I need the help, and that's that. I am tired of our house looking a mess. Well, off to do some exercises.
06/25/03 That time of year again...summer vacation! I am amazed at the progression of this disease year- to -year. I used to enjoy getting away, but every year i get to witness what this awful disease can do to a body. So, I take lots of books, get a bottle of wine (only 1 glass a day), put on a great cd, and sit on the deck (bayside) and try to recapture my usually positive outlook. I always take my "personal" journal along, only to write my most intimate feelings there. I am amazed that I still continue to get angry over the same stuff every year. Ironic, that when my kids were litle, I was able to do so much, yet forced to stay in our room due to naps. Now that my children are getting older and are able to do more, I am forced to stay in the room due to my naps. I'll post again when I return. Perhaps it will be different this year! I do believe in miracles....
06/19/03 Well, we've had a bit of on/off sun the past few days, so my outlook is improving. I could almost feel my serotonin levels dropping. Been doing a little weeding, about an hour is enough, but my weeds are growing faster than I can keep them at bay. Life is still throwing me curve balls at home. Everyday is a new problem that needs handled (by me, of course). Soon will be our summer trek to the beach. Each year I can do less and less. So, I pack lots of books to read. The main problem, though, is that I am reminded of the progression of this disease. Tonight is our support group mtg nite. There are times I'm not sure if I feel like going, but I know the others count on me to give our group info on the latest pd advances, words of encouragement, an inspirational reading, as well as humor. Well, I need to go get food ready for the meeting--tonight I think our picnic will be indoors--stupid rain! Hope everyone has a great day!!!
06/12/03 test123
05/22/03 When MJFox was on tv last week, with Jane Pauley, he taked about loneliness. He stressed that it was not the fact that it was not about being left alone, but more that he felt a sense of "being alone" in this struggle. Although his wife and children provide him with constant support, no one knows the feeling of having pd, unless you have it yourself. Even then, a person's lifestyle, family, friends, neighbors, financial situations, symptoms, side effects of meds (or lack of any of the above) determines our own way in which we live our lives with pd. It is ultimately us in how we handle our situations. If I've learned anything about pd, our emotions cycle as we live our days, minute-by-minute. We learn to live with the ridicule, embarrassment, frustration in not being our "old" self, asking for help, etc. Most days, I do great, but other days I struggle with this overwhelming "gloom and doom" feeling. As you may have sensed, I'm struggling this week to find my inspiration. Thank you, Tammy and Bren for your kind words. It helped with the feeling of being alone!
05/21/03 I'm still in a bit of a funk! I have never felt so sad that others constantly misconstrue my true intentions of trying to help others. Whether it be at home or in pd rooms. Perhaps its time again to just forget about all this pd stuff for awhile, and stay away from the computer altogether....
05/20/03 Sometimes it feels good to be home again...where you are not judged for expressing your feelings. I thought most of these on-line support groups were to help each one of us. Man, was I ever wrong. I visit several groups, yet this seems to be my home. I have never been accused of wanting to do more than try to help any other parkie here in my own little space. I've encouraged others to visit, or even join because I realize the fact that pd is frustrating! It helps to write
your thoughts down, whether they be words of anger, pain, suffering, happiness, fear,etc. That you Brenda and Nan for giving us such a spot to reveal our innner most thoughts.
05/18/03 Good morning! Or is it? Some days make it seem difficult to determine what lurks ahead for me. I've learned to accept the fact that I must life minute-by-minute, but it still stinks. I think that this "life sentence" of dr. visits, meds, etc. is getting old, and i'm sick of it! Even though I am on disability retirement, my life is consumed now in dr offices. Don't get me wrong, I feel that I am in competent hands, and I am getting by with the constant pain from dystonia, but I want ME back. The active person...the supermom...the teacher. Sorry, just venting a bit. As I continue working on my book, which may never even hit the presses, I realized something quite extraordinary--one must almost be in a state of denial to fight this disease. Accepting the changes, accommodating lifestyles as well as your home needs, trying out new combinations of meds, is a slap in the face--yes girl, you have a degenerative, progressive, and incurable problem ith your brain! I try to keep a sense of humor, but today I don't find much to laugh about. I guess today will be one of my "pity party" days, as my husband calls them. My life is spent trying to remain upbeat, but some days, I feel like I'm not being honest with myself, or others, by trying so hard to be a person who one wants to associate with by any means. Well, I suppose, before anyone else in the house wakes up, I need to do an attitude adjustment. Hope today goes well for all of you readers...
05/04/03 The Unity Walk was wet, but wonderful! As always, it's nice to finally put faces to names. A friend went along with me, so it was nice for the both of us to just "get away" and have fun. This has been a busy month for me. I was asked my Medtronic to become an Activa Ambasador. They have been great in helping arrange many of my "speaking engagements" regarding my DBS experience. During one these presentations, I noticed my right battery level was beginning to get too low. So, a trip to Philly to consult, then another for pre-op, yet another with my movement disorder specialist, and this up-coming week, the battery replacement. My spirits are running at an all-time high as I have discovered my new vocation in life is pd awareness and advocacy. I am helping our local support group in working on fund raising activities, creating a website, brochures, etc. This has given me a new life so to speak. I feel like I am actually doing something worthwhile again. I don't feel the need to wallow in self-pity. I did learn something about myself at the walk...although I can say I've not been in denial regarding PD, I have allowed this disease to sneak in (from where?) and take control over my self-esteem. Now that I am aware of this, however, I am battling back. I am not in the ground yet, so I need to keep fighting. Life is too short to sweat the small stuff. My kids are at the age now where they make choices, and need to live with the consequences of those choices. It is hard to regain that "stand your ground" attitude at times, but I getting that part of me back again. So, the Unity walk was quite a success story for me!!
04/06/03 Good morning to all! Things have been busy at my house. Patrick turned 13 this week...unbelievable to me! So, Friday night he had a sleepover with 2 friends. He's much too old for a party, and even got annoyed with me when I awoke him with "Good morning birthday boy!". He's starting to get that dark upper lip thing going. My speaking engagement on Tuesday went rather well. The Medtronic rep i'm sure was exhausted from driving most of the day. The expected 30 people--there were more like 50 people present, 2 of whom were recent dbs patients as well. I got a calllast night to speak to a group today, but on such short notice, I had to decline. I normally would have agreed, but I think Medtronic prefers me to have a rep present. Plus, I actually said "perhaps another time." That is a big step for me, as I usually take on more than I can handle. Sunday is my laundry day. Aah, such fun. Enjoy the day, all.
03/25/03 I sit here at 2:30 am wondering why I am awake. I am tired of being nurse to myself, my kids, and even my dog! It seems that my schedule of dr. appt. takes up most of my monthly calendar activities. Every week has at least one or more. Once again, I find my newly redecorated home is a shambles. And I am the only one who seems to care--I just cannot keep up. My youngest, Nigel, has been home with the flu. Yesterday was his appt. with the neuropsychologist--follow up appt. He told me that not so many parents take the initiative to be their child's advocate--how can I not be? Patrick, my oldest, is having trouble keeping up with the demands of the high school--I worry for him that his going to fail this year. My stepson, who has been living with us since his army discharge, still is only working part-time, and seems quite content here. I keep pointing out full-time jobs, getting hime books on resume writing, job-hunting strategies, etc. but to no avail. I try to remain busy as a pd advocate. I have been quite active in getting our support group active in public awareness of our group. Each month I do the inspirational readings (implemented first by the founder of the group). This had gone to the wayside by the groups changing leaders. But I feel it is an important part of the meeting. We held our first fundraiser in February. We made $600 for the Unity Walk. It was fun, but alot of work on my part. I created more professional looking brochures for our group, set up a website, an e-mail address, and am in the process of looking for other simple fundraisers to promote awareness of pd. Medtronic, the manufacturer of my dbs implants, has invited me to be an ambassador for them. Basically, it will involve replying to e-mails, giving presentations, and speaking to pd patients regarding the surgery itself. I have been doing this on a fairly local level on my own, but now I will be reimbursed for any expenses incurred for this. Many of my local neuro's office seem to be very appreciative of the pd info center that I set up in the office. The materials were all freebies put out by various pd groups. As the editor of the Young Onset Parkinson's Association newletter, I have been doing quite a bit of research-- always room to learn. As the PA state rep for YOPA, letter writing is also on my list of activities. Next month, I will be in attendance at the Unity Walk in NYC. I currently am in 4th place in fundraising. I hope to meet some of you there this year. I met quite a few of you in 2000, and am looking forward to this event again! Well, since all is quiet, now may be a good time to write my four newspaper inserts on "April is Parkinson' Disease Awareness Month." Hope you all are doing ok....
03/16/03 I am feeling a little diappointed. I was to meet with another yopd patient
yesterday, however, he did not want to meet with me. His mom had contacted
me through my neuro's pd info center that I had set up. At least I know
that others are perusing through it!!! Medtronics has invited me (out of a group of 10) to be an Activa Ambassador.
This will allow me to persue my "new vocation", which is to teach others how
the dbs has restored my quality of life, as well as giving me the opportunity
to meet w/other parkies the importance of public awareness and advocacy. I'm not going down without a fight...
03/09/03 Good morning to all!!!!!!!!! This has been a week filled with emotion for me. I went to the elementary school to observe my 5th grade son in all of his classes. He definately needs a full time aide. His preliminary mtg. on Friday went well. Yes, his teachers were not aware that many of his problems are neurologically based, not just behavioral/emotional issues. This week I also met with my 7th grader's teachers to discuss his fear of testing and his study habits. I gave them my e-mail address to let them get in touch with me if he should not turn in an assignment. I also let them know that he is staying after school to make up missed assignments. Then the oldest...I had him redo his resume. He is looking for a job in the computer field. He needs a full-time job, but unfortunately a rural area doesn't offer him much hope. Somehow, I need to light a fire under his butt to get him looking a bit more zealously. Well, I'm glad this week is behind me now. This week I need to focus on getting this house back into order. I know that I'm not doing any favors to them, or myself, by not assigning them chores. Wish me luck.... I made my room reservations for the Unity Walk in New York City. I am looking forward to just getting away for a weekend. I am not sure yet who will be going with me yet, but I am going. Hope to see some of you at the walk... Kathleen
03/01/03 I was quite surprised as I was viewing the comments that Lucy had written a comment regarding my budding artist nephew, Andy Piedilato. Andy, a native of Georgia, attended PRATT in NYC to pursue a master's degree in art. He loves the city life and the prospects of making a go at being known as an "artist". As a young child, he artwork was amazing--the ability to copy images on paper would astound me, as well as his art teachers. He now pursues abstract art. His philosophy is that anyone can copy objects on paper (yeah, right--lol). I love his work and am quite proud of him. A kid from Georgia trying to survive in the "big apple" proves he is a dedicated young man trying to make a living at what he loves. The true American dream--Andy Piedilato--what a treasure it is to be his aunt!!!!!
02/28/03 I've been very busy surfing the net on pervasive developmental disorders (PDD). My youngest was diagnosed with Tourettes, autism, as well as Asperger's syndrome. However, he only meets some of the symptoms of each, so his "official" diagnosis is listed as PDD-NOS. NOS means not otherwise specified. For some reason, they want to send him off to an SED class- social/emotional disorders class. Having worked in the school system, that placement is reserved for the most dramatic situations. I feel very betrayed by the school I spent my teaching years in dealing with children that have dissabilities. No, my degree was not in special education, but I made it part of my job to learn how to mainstream these children in a regular classroom. That was my job--to teach ALL children. So, as a "mother lion protecting her own", I find my battle is to set the record straight. I observed one class yesterday-he was better behaved than the others!! I have requested to observe all of his classes. Part of my teacher training taught me how to objectively observe children with behavior issues. So, my next week will consist of spending time in the school, then coming up with a plan that my husband and I will accept in his Individual Education Plan (IEP). I am very angry and hurt that I must do this. This is what my taxes pay for afterall. I have spent thousands of dollars on evaluations, private counseling, doctor appts., all to help my son. I have not once asked the district to pay for any of that. There again, I believed it to be my job as a mother. I wish I could get rid of the feeling that I am being "black balled" for doing what I think is best for my child. So, for a little while, I'm to be viewed as a "pesky mother" instead of "competent teacher". Oh well....
02/26/03 This winter weather has really gotten me down... I am busier now on disability than before--doctor appts., dentist appts., sick kids, 21-yr old moving home, support group fundraisers, speaking engagements regarding dbs/pd in general. We had a terrible snowstorm last week--the week our support group received our tulips. Needless to say, I was quite busy delivering them myself. We did sell all 200 bunches- enough to raise $600 for the unity walk in April. My youngest son had his evaluation with a pediatric neuropsycolgist. He spent 3 + hours with us==diagnosis: tourette's/asperger's/autism. The school district wants to put him in a social/emotional disorders class==which my husband , his doctor, nor I think is appropriate. So, I've been busy researching, meeting with other professionals to keep him in his present school My 12-yr old is failing 7th grade. I guess pd has had a definate negative impact on my role as a parent. My kids need to have a mom who has patience and be able to discipline. I'm too tired to fight, My 21-yr old stepson received an early discharge from the military. He is only working part-time at Staples. Needless to say, we are being eaten out of house and home. We agreed to let him stay until he got his financial obligations in order. I don't see that happening in the near future. My house, which I felt was finally getting back in order is more of a shambles than before. I am getting aggitated by the apathy of those with whom I live. But, I try to keep my frustration hidden behind the eternal smile I have plastered on my face. "Smile and the world smiles with you", so I've been told.
02/15/03 This year I am planning on attending the Parkinson's Unity Walk. I have been busy gathering donations from family and friends. There generosity continues to amaze me... The most precious donation was that of the students at Renn Elementary school. The children had a "pennies for parkies" jar set up, unbeknownst to me. Yesterday, as I was sorting through the checks from staff, and the 1's, 5's, and coins in the jar my own children entered the room. My children inquired where all the money came from, and I explained. My oldest then said,"wow mom, they must really miss you." My response was that i miss them also. My youngest (age 10) asked if mj fox would be there also. I didn't even know he knew who mj fox was, let alone that he was a young onset parkie. My response was "more than likely." The children helped me sort through the checks, bills and coins, and totalled the amount. There was almost $250 in that jar!!! Then youngest said the most touching thing to me. He exclaimed, "That should be enough to cure you, mom!" Out of the mouths of babes...I hope he is correct.
02/02/03 Just a short entry today...post space shuttle disaster. One never knows what the future brings= as all of us parkies are well aware of. Take advantage of the "good" moments== cherish them as if there were no tomorrow.
01/23/03 I realize that I've been neglecting journaling lately. I have been quite busy hitting the pd awareness road. I am bound and determined to not let pd stand in my way. I am working with our medtronic rep in doing various speaking engagements regarding my dbs experience. I have also be trying to find research on pregnancy and pd. I took my youngest to see a pediatric neuropsychologist yesterday--finally a diagnosis! Autism and tourette's. The doctor is doing blood work to determine any genetic cause of this. The next step he wants to research is if a link exists between my pd and the neuro problems he is experiencing. At last--a doctor willing to do some research!!!!! The wonderful thing about this visit was that a former speech and language therapist that worked with Nigel for 4 yrs took us--she is now the school district's special education case manager. So, perhaps we are on the right path to getting him specific help for his specific needs. As for me, I need to revisit my neurosurgeon next week, as the right battery of my dbs is beginning to fade. So, then we can plan for a date to do surgery to install my battery. My step-son, now returned home from the army. Where do we put all this "stuff"? And when will he get a job and get a place of his own? I am planning on attending the unity walk in nyc, so I've been busy trying to gather donations to send. I have been working diligently with our support group also. As the youngest member, our group now has an "official brochure", a website/e-mail address, and we our working on our first fundraiser. I hope I'm not stepping on toes by doing so, but while I am still capable, pd awarenss is my new vocation. Hope all of you try to stay warm--the weather outside is frightful!!
01/01/03 A new year.....what will it bring? I hope this year brings us "the cure". I know it's out there--somewhere. This past year has brought us steps closer. I am yet fearful of my future without it. I'm tired of pills and dr. appointments--non of which bring to my own "normalcy"--whatever that is. My hope for my youngest son this year is they can correctly diagnose his neurologic problems, and guide me to help him. My hope for my oldest is that he finally understands the importance of studying hard. I hope my stepdaughter reconnects with her father. My stepson, I hope he has learned from last year's mistakes, and faces reality head on, rather than hiding in the shadows. My wish for my husband is that he can find happiness in our dysfunctional "family". As I look at our combined family, I feel as though I am watching a soap opera. I strive to understand, listen with an an open mind, and offer guidance with tact and reason. Truth be told, however, the daily and constant pain from dystonia makes me irritable and unfortunately prevents me from using the patience I need to be an effective mother and wife. A new year= a new me. That is my motto for this year. I am not exactly sure how to go about this though. I know that I must stick rigidly to my meds schedule, a diet plan that is balanced, and incorporate an exercise plan that I can manage without causing further muscle cramps. I plan on continuing my pd awareness my community, state, and even nationally. I need to continue researching new approaches to treating this disease. I need to be more dilligent maintaining a daily ritual of exercise, daily household chores, keeping up with paperwork. I swear that my filing cabinet breeds faster than rabbits. I pray daily for everyone in this world for peace. Peace of mind, body and spirit. Happy new year to all...
12/24/02 Just wanted to wish all a happy holiday!! Like all of us parkies, and don't think Santa will bring us what we all are hoping for this year (again!!). Had a root canal done on Friday. Went to Philly to my movement disorder specialist. The dystonia is so painful these days. I will be starting on artane--hopefully will get some relief. I hate thoughts of adding another drug, but I need help. My mds "played" around with my dbs big time--it still amazes me!! Although this pd is progressing, I know that without this device, I would be completely disabled, so for that, I am truly grateful. I still try to keep working on the young onset pd awareness focus--my new career. I have several presentations lined up in the near future. Well, I hope the new year brings us "the cure". Have a great holiday all..........
11/28/02 Thanksgiving, 2002 This is the first in 20 yrs that i could not prepare our family feast. Not because of pd==but as they so, "from complications of pd". Three days ago i bruised my ribs tying my shoes! The pain is unbearable, thus making my dystonia worse. My mom invited us to her feast, which i readily accepted. My husband, however, did not welcome the invitation, so just the boys and i went. Needless to say, i am very put off by such selfish, childish behavior. I hope everyone else had a day of caring family to surround them, as i didwith my folks...
11/16/02 I've been quite busy straightnening up the house for the holidays. Cleaning out closets--tossing what is no longer of use or meaning. I has been an exhausting week. If not for my mom, I would never be able to tackle such a job!
11/08/02 Hi! Yes, I'm still hanging in there, but only by a thread at times. I am in alot of pain from the dystonia. But, it could always be worse. I've been out promoting PD awareness as best as I can. The local paper did a nice article/interview/photo essay. Temple University Hospital did a wonderful article on DBS with me & my surgeon. I've been visiting parkies who cannot make our support group meeting. I've been invited to be a guest speaker for not only my neuro's pd patients, but for a support group 3 hrs away! I offered to set up a pd info area in my neuro's office. So, I,ve been a bit busy lately. In addition, I'm the state representative and the editor fof the quarterly issue for Young Onset Parkinson's Association. PD continues to progress--I hate this disease! My mom has been helping me houseclean, neighbors and friends have been stopping by to help out with whatever (something always needs to be done) and a former kindergarten student of mine (now 17!) has been coming once a week to help me for his community service project. My former fellow collegues did a "dress down" day for me. They raised about $400, which helps pay for my massage therapy, which is $60 a week, but worth every cent!!! My Christmas shopping is just about finished. My shopping this year is being done on-line. People are in too much of a hurry, and I speak my mind when they are rude to me. I think the pain is making me become my feisty old self. My cognitive therapy is playing on-line scrabble. One must be careful though, as it is quite addictive. Hope all of you readers are getting by okay. I just ordered new checks that have theis saying on them: "Miracles happen if you believe..." I'm waiting for our miracle to happen...
10/06/02 Sorry I've not been journaling more regularly. I think I have been burying my head in the sand
regarding pd in the past several months. I am not happy regarding the progression of this disease.
I am just plain sick of it, quite frankly. The dystonia is unbearable. I visited my MDS on Thursday,
and we are working with finding the perfect combo of DBS adjustments and meds. Things at home have turned from bad to worse as far as relationships are concerned. That also has kept me from
journaling. I am afraid I'll write things that I really don't want the whole world reading. Yes, my depression level is right at the breaking point--I intend to continue the fight though. I will not
allow this disease to destroy everything... The truly scary part of all this is I am finding slight cognitive changes--word recall is quite frustrating.
I often will be conversing and find I am lost==what was I going to say? Perhaps God's way of letting me look at the world through my son's eyes.
07/29/02 Good morning all. I have been journaling for awhile--been fight with feeling the "blahs". I don't really think others come here to read about me whining. I know there are others out there who come here for support and encouragement, and all I would have to say is "hang in there"...our emotions cycle. Right now my our cycling backward and downward. But I know that if I wallow in my own misery too long...I am in trouble. I guess my reasons for feeling this way now is caused by my constant pain from dystonia. My muscles are always in spasm, and when I try to move--it hurts. So needless to say I haven't been able to do much...which leaves my mind idle to dwell on the negatives. Another reason for my long pity-party, is my kids are home from school. My house is always a mess. I no sooner get one room picked up, and all the others are a shamble. Four more weeks, I tell myself. But the trade-off is getting them up and out the door on time. It seems life is full of trade-offs. PD meds vs side effects, living with tremor or pain, a clean house or constant nagging, etc. And I get tired of those choices. My nephew's girlfriend has been coming over on Tues and Thurs. Right now she's painting the trim on our porch. Not an easy task as the railing has 4 different colors. And we must wait a day or two, because of the high humidity. I just feel like I need a break from all of this alone. Go somewhere, let them fix my food, clean my room, get pampered a bit. Back to reality Kathleen! I'm not rich. Money is tight--gotta save what I can for the bathroom redo. That is my last room I need to make pd friendly. Then I need to start saving for a downstairs bathroom. Life-----it's always something. Then I look around at others, even in my own family and neighborhood, who have it more difficult than I do, and I'm ashamed of myself. Well, it's 3:15 am, I'm so stinking hot and sweaty. Gotta get one thing done today, hmmm, not sure yet what that might be--should probably go grocery shopping. Old Mother Hubbard's cupboards are looking pretty bare...
07/14/02 Good early morning!! It's 3:30 and here I am--alone in the quiet. This is my favorite time of day. The weather has been a bit cooler here, but is to turn warmer again. The heat zaps me of any get-up-and-go. Yet I feel I am wasting these cooler days by sleeping/resting. I've learned to listen to my body though. The days when I'm adjusted take a real toll on my body--and it takes a while to get my meds back on schedule, and a new adjustment to the changes made in my brain. Hope more of our journalists would post more often. I do so look forward to see how they are coping with their pd. This used to be a real hot spot on this site, but I guess like all things, people's needs change. As for me, I write because it helps me deal with pd. I often go back and read my archived journal pages--talk about a roller coaster of emotions!! To quote an oldie-but- goodie song: I've looked at life from both sides now Through win and lose, and still somehow It's life's illusions I recall I really don't know life at all.
07/12/02 Good morning. Needless to say, I slept most of yesterday. This is quite typical after I have an adjustment to my DBS. I am usually in quite a "brain fog" until the adjustment has a few days to take effect. I was able to manage to get a couple hours of gardening done which was long overdue. My nephew's girlfriend has worked quite dilligently to get my patio weed-free. So now I can fire up the barbecue without fear of setting the patio on fire! LOL My mds also increased my anti-depressant. He couldn't believe that emotionally I was functioning so well on a starter dose! But he felt that with so much going on at home, it was time to up the dosage. Hope everyone has a great day!!
07/11/02 I went to my mds yesterday. My dr. made adjustments to control the "breakthrough" tremor on my left side. Unnfortunately, not much could be done for the dystonia. My body is sore from an 8-hr trip in a car, and the dystonia. I have been having problems on the home-front as well, which is also exhausting. I go for my massage therapy at 8:00 this morning. I am having problems with my insurance company paying for these adjustments. So, I need to try to track down what the problem is. Wish me luck...
07/08/02 This shall be a busy week for me. I have an appt. with my neuro, then massage therapy, then car goes to garage for routine maintenance prior to my trek to the mds on wed. Tomorrow Nigel goes to the psychiatrist. None too soon I might add. He is so emotional right now. As well as being quite irrational, he is scaring me. I don't know how much more I can physically and emotionally give to him. I feel that my life is quickly getting out of control. I need to get a grip on life as it is for me now. I must stop looking over my shoulder at how things used to be: all I could do. Count your blessings, Kathleen, for they are many. Now if I can remember where I put them--lol.
07/06/02 I'm back from vacation. Needless to say, that was another wake up call for me. I could tell just from last year that this pd is robbing me of enjoying life as it once was. Just playing miniature golf with my boys required alot of effort just to keep my balance. My husband was frustrated by my inability (or lack of desire) to do much. I tried, but my body doesn't want to respond. I spent most of vacation in a terrible frame of mind--hiding it behind reading in our room. My husband went off to do his "own" thing, leaving the kids with me. So, not really much of a vacation--just lots of unpacking and laundry to do...
06/27/02 It has been a bit since I've written. This heat justs zaps any bit of energy I wake up with in the morning. We leave for vacation in 2 days, and I have very little packed. It seems each year is harder than the one before. As I pack this year, I must remember 2 new items--my handicapped placard and my cane. I don't use my cane often, because it never really know when (or if) dyskinesias will set in. I don't really want a cane in my hand if that should happen--it could prove to be a lethal weapon to those close by!!! For the past several years my husbands asks if I still want to go (to the beach). My reply is always yes!!!!!!!!!!!! But this year I'm having reservations about my mobility. I just can't move quickly. That may prove to be a bit of a problem crossing a busy street. Another concern I have is being out in the heat and sun. Even though I wear a high spf sunscreen, I break out in a terrible rash if my body gets too much sun. Perhaps this is the last year we go to Ocean City, Md. Maybe its age, maybe pd, but I am beginning to prefer the beach where all is calm, relaxing, and peaceful.
06/22/02 Good morning to all. Not much new since yesterday. I've been doing a bit of poetry writing on all this pd stuff. So here goes: God works in mysterious ways He encourages me day by day But one needs to look with eyes open wide For His message He often hides. The chirping of birds The smell of flowers A brighter tomorrow Are no reasons for sorrow. There is light after dark Life after death There is joy after sorrow I remind myself with each breath. God is our Father He watches over all He guides us when we stumble He picks us up when we fall. This Parkinson's is my cross to bear I understand this is my fate Thank you, Lord, for hearing my cry Help other to hear you, as I try. ~Kathy Webster, 5/02~
06/21/02 Good morning to all...bit tired this morning. I went to our support group meeting last night. Good food, fine friends. I had not been there for awhile, everyone was very worried. Parkies are such caring individuals...
06/20/02 Yesterday I was bit more myself. A little more energy than the days before. I watched an episode on Discovery Health that showed dbs for dystonia. Yes, my surgeon had informed me that they are doing that now. Being bilateral now, I've run out of room...lol My husband's grandmother turned 98 yrs old yesterday, so they had a small get-together for her. She was so cute. Guess who was the only one to spill a glass of red punch all over the beige carpet? A clue is, that it was not my kids. I found out yesterday that my disability retirement was approved on Monday. So, that was a relief--since I had already resigned my teaching position. It was approved for long-term, which means that it will not be necessary to apply every year. Today is when I learn the fate of my health insurance. I'm nervous, but I'm sure the superintendent will guide me to the correct decision. I hope...he has been very fair and generous in the past. His mother-in-law has pd, so I think he looks out for me. Wish me good news...
06/19/02 Hope I've recovered from 3 days of garage sales. Spent 3 days pretty much sleeping. This pd stuff takes a toll on the body. I meet with the school superindent tomorrow regarding my health insurance, now that I'm retired. I'm nervous about it. I definately need to keep my insurance with all my medical expenses. Sure do hope all goes well with that meeting...
06/18/02 Wow, I slept until 5:30 this morning. I know that for most, this isn't sleeping in. So now, I am behind on my med schedule, as I start my meds at 4 am. I also have a terrible headache. I feel like I have a hangover. I didn't feel real great yesterday, either. This is my typical body's reaction to overdoing things. I just feel like something bad is going to happen around me. The grey cloud is looming over my head, and I'm not sure what it is. Hopefully, it is nothing--just me being tired.
06/17/02 Well, the garage sale is over. I accomplished my goal of getting rid of so many things. The next couple of days are to be a bit cooler, so it may be a good time to tackle the attic, and get rid of junk from there. Where does all this stuff come from? It makes me wonder why I have saved so much of it. So much I know I'll never need or use again, so why bother keeping it. Although I only made about $150, it was 3 days well spent. I probably would have gotten rid of more stuff, had the weather cooperated--it poured the last 2 days. Hope everyone has a great day!!!
06/14/02 Good morning to all. It's 2:30 am and have been awake for about an hour and a half. I wake up in the middle of the night sweating profusely. I know I should be sleeping, as today I will again not be able to rest due to having the garage sale. Yesterday I was able to get rid of quite a few large items, which was great. I am practically giving stuff away, just to get it off my hands and out of my garage. Even still, I made about $150. So, I guess I'm doing okay. The garage still has so many items in it. Today and tomorrow I think will be further mark down in prices. I get sad seeing my old clothes (size 4/5), with their tiny waistlines, and remember back--pre pd days when I was able to be fit and trim--a lean, mean, fighting machine--LOL!!
06/12/02 This heat is zapping me of any ambition to do much of anything! Today I must get ready for tomorrow's garage sale. My son will help me get tables around so I can get stuff set-up today. That is the nice thing about having a garage. I get things set up the day before, then it is just a matter of opening the garage door. Last night I was awakened by a woman inquiring about having a DBS done. I feel so bad for so many of the elderly people that I've been in contact with regarding this procedure. It seems that their doctors don't fully explain this disease to them, let alone the procedure. After telling her that you do need to be awake, she quickly informed me "No way!". I did invite her to talk with her neuro (same one my son goes to), then call me back--that I have videoes, pamphlets, etc. I can give to her. I also invited her to join our local support group. Again, she seemed hesitant. Poor thing I think is in denial. I'll call the dr today, perhaps I can clue him in as to her fears...
06/11/02 Good morning...I spent my day yesterday sleeping most of the day. My husband hasn't quite figured out how much of a toll emotions can wreak havoc on my body. Last week was quite a strain... The heat also zaps my stamina...and today is supposed to be even hotter and more humid. So, not sure what the day may bring...
06/10/02 Good morning all... Last week's events, which were quite emotional, caught up with me yesterday. I spent most of the day sleeping, trying to regain my stamina. I go for my massage therapy this morning, but after that, I'm, not exactly sure of my plans for the day. I know that with my kids home, my house is a disaster already, although I just cleaned on Friday!! There are days I get exhausted just looking at all the mess. But I know that the best solution is to try to do at least one thing that is worthwhile for the day--even it is just loading the dishwasher and cooking supper. I just haven't decided yet what that one thing will be as of yet. Sometimes, I find, that once I get started on one project, I do build up the energy to accomplish something else. Who knows...perhaps cleaning the bathroom. A job I truly hate, being the only female in the house. Hope everyone has a great day!!
06/09/02 Good morning!!! My retirement dinner was more than I could have hoped for. I even made it through my little impromptu speech of "thanks to..., yes,I'm writing 2 books, etc" without shedding a tear. There were quite a few people present, many whom retired years ago. Then came the presentation of gifts. One of high school art teachers has his own goldsmith jewelery business. I received a beautiful pair of handcrafted diamond earrings. They don't have any backs to fumble with--they are perfect. The design is definately me--ones I would have chosen. Each retiree gets a personal gift--each different. One even received a new hunting gun. The food was great, the attendees were very uplifting and encouraging...It was a grand event to end a wonderful career!!
06/07/02 Good morning!! Yesterday was the kids first day home from school for the summer--and wouldn't you know it poured all day! They did get along just fine, though--no fighting or bickering. They actually played together!! Tonight is THE big night--the retirement dinner. I got my pants hemmed and re-tried those sandals again. Some ironing to do today--yuck!! And I must get the floors swept. This warmer weather is making my dogs shed really bad. So needless to say, there is alot of hair on the floor. It almost looks like we have carpet--lol. Well, I hope everyone has a great day...
06/06/02 Good morning!!! I'm feling a little better this morning. I planted my porch plants yesterday. Digging in the dirt has always been my personal emotional therapy. I have lots of housecleaning to do, wash clothes, etc. to do today. I've got my new pants to hem before tomorrow evening (retirement dinner). I attempted to polish my nails last night. From a distance, they don't look bad---lol! I even did my toenails, since I'll be wearing sandals. I debated on painting the curled toes--no one will see them, but I was able to straighten them out to paint them. Well, looking around, I best get busy. Have a great day all...
06/05/02 Good morning...yesterday was Patrick's graduation. I was quite a mess through it all--knowing that my career is over. I don't even know what exactly I'm writing in here for. So many feelings I don't quite understand. I don't feel like doing much of anything today. But I know deep down the best thing to do is just to do SOMETHING... anything to get my mind off of the "end".
06/04/02 Good morning...Yesterday's shopping went fairly well. I found a pair of dress sandals that accommodate all but one of my curled toes. My husband's pants actually fit. But Patrick's clothes are too big, so back to the store today. I've got lots of sewing projects lined up also--my pants need to be hemmed, I got Patrick a T-shirt that he says is too long, so that needs hemmed, a bedskirt to finish, pillows to make. Yes, I can find lots to do. And everyone was so worried that I wouldn't do anything--Hahaha! I fooled them all...
06/03/02 Good morning!! I've not been sleeping as much at night. The increase in the requip has helped with the dystonia a bit more. I've noticed that my walking is a bit easier now. My knee and hip seem to be more flexible as I walk, and the spasms in my arm, hand, leg, and foot are actually dwindling! So, there's the trade-off, not much sleep, but less pain. Another improvement from my increased mobility is getting some spunk back--"I can do it myself" attitude. This has always been a blessing and a curse. It's the attitude that I don't need to depend on others to make my life what it is. As I said, both a blessing and a curse. It appears to me that this requip acts almost like an amphetamine. I can go for hours and hours, then I drop. I remember when I was at max dose (pre-dbs) of 24 mg/day that I was racing around, my heart was pounding. I wouldn't sleep for days at a time, yet I had energy to keep going. Has anyone else noticed this? I went shopping yesterday and got some more presentable clothes--once again, a size larger than last year. I needed to get something to wear to Patrick's 6th grade graduation tomorrow evening, as well as the retirement dinner on Friday. Today, I would like to see if I can find shoes that will accommodate my curled toes. I don't think sneakers will look very nice--lol. I also need to look for pants for my husband, and clothes for Patrick. Neither are into wearing "nice" clothes. So, that will be my challenge for the day. Wish me luck...
06/01/02 Good morning! It's 12:30 and I'm wide awake. I probably would still be sleeping, but the dogs had to go out. And it seems that once I'm up, I'm up. Yesterday I got to the grocery store--I was done for the day after that. Nigel had his visit with the neuro yesterday. He doubled his dose of clonodine, and is supposed to see a psychiatrist to help him deal with the Tourette's. My husband is going fishing today with some friends. I'm so glad that he is getting out more. It is depressing to just sit here day after day. Well, maybe I'll try to go back to sleep--wish me luck...
05/31/02 Good morning. Patrick is soooo very excited about his new room. Yesterday I got the doors painted and the hardware back on the doors--privacy once again!! I called the school about his locker and my nephew brought it 10 minutes! Now that's what I call service. The first coat of rustoleum is on it. The second coat will go much faster. So, I just need to attach the bed skirt, add the throw rug, still waiting on his hamper and NHL calendar, and it is finished!! It is the coolest room. He takes all his friends upstairs to show them--he is so proud of it!!!! I came up with this great way to do bedskirts. Most bed skirts don't accommodate for foot boards. So I cut where the corners are and hand-stitched them. Anyone who has ever used a bed skirt knows the difficulty of putting it on under the mattress--truly a 3 person job! So, I cut out the part that goes on the boxspring, leaving about 1 1/2 inches. I then stitch it under, so it is about 1/2 to 3/4 of an inch. Then I attach sticky back velcro to the boxspring and bedskirt. Now it is a one person job! As we all know, our lives are all about adaptations and accommodations. Just one I wanted to share with you... My med adjustment is going slow (like everything else--lol) but the dystonia is not quite as painful now. Even my massage therapist has noticed quite a difference. Nigel goes back to his neuro today--a follow-up on the Tourette's medicine. I have noticed fewer tics, but also more behavior problems. That, though, could be the end- of-the-school-year adjustment. Any disruption of routine throws him out of whack. And that adds to the behavior problems. School is done next Wednesday, I thought they went until Thursday. So, I guess today I will run a few errands. I generally don't enjoy taking the kids with me as I shop. I get overwhelmed enough by myself. Just a quick trip to the mall and grocery store. Hubby is talking of going fishing with friends tomorrow. I've really been encouraging him to do things. He says he feels bad about leaving me, but he needs time away. I tell him I'll be fine. My folks are right down the street, and lots of neighbors close by who would help in a heart- beat. We've had some discussions over the bathroom project. He keeps telling me how expensive it will be, but it needs to be done. If I could get a few things here and there, it might not seem so bad. My mom is going to talk to her carpenter friend at church on Sunday to see how his schedule is going. But it is something that needs taking care of this summer. Well, enough babbling on my part. I've been up since 1:30. It's now 3 am. I hate getting up this early, but once I'm awake through the night, I can't get back to sleep. I sure can tell that I'm increasing that requip...
05/30/02 Good morning to all!! Yesterday proved to be very productive. Patrick helped me clear out all of his furniture before he went to school so they could lay the carpet in his room. Fortunately, the installers came in the morning, so I had the time to reload his room before he got home. His room looks great!! Just waiting on his locker now, so I'll call the school again today and see if they can bring it over to be painted. The carpet installers cut down his door to fit over the carpet, so today I can get the door painted and the hardware put back on his door. He loves it!! I have to finish some minor sewing on the bed skirt and get that on his bed.I am waiting for his new clothes hamper to arrive, I want to get him a fluffy throw rug, and some underbed storage boxes--then we are done with "the locker room"!!! I'd love to be completely finished by this weekend. The kids are done with school next week. So that would give me time to do some house cleaning, run errands, etc. while I can. Hope today is as productive....
05/28/02 Good morning! I slept in this morning--till 5:30. I'm not sure if that is going to be a good thing or not. My kids have off from school today, and my youngest is already up. It's going to be a long day--lol. I've lots to do today, as they will be installing my son's carpet tommmorrow. Fortunately, I've been slowly removing items from his room, but the big stuff (dressers, mattress, box spring, etc.) need to go. Somehow I need to get the door off his room, as it will need to be shaved down. The problem is that the hardware has so much paint on it. But I'll chisel away at it, as I've had to do with all the doors. Then soak the old paint off, sand it down, and spray paint it. Then the door will need sanded and painted. Lots of work, but it needs done. I got his bookcase painted (first coat) yesterday. The only other painting then to be done is the locker unit that I'm waiting on the school to bring over. And I hate to bug them, since I'm getting it for nothing. The next room to be done is the bathroom. I'm leaving that room to the professionals. Too much plumbing, electrical, flooring, window replacement, tub/shower replacement, and real carpentry skills needed there. So, basically, my painting work, when Patrick's room is finished will be done for a bit. Then it's off to really cleaning out junk--the sun porch, the hall closet the attic and lastly the dreaded basement. I figure that should take a few months (at least)! I plan on a garage sale in June, July, and August. Whatever is left at that point will get pitched. There is just too much junk here to go. Yes, as you can tell, I'm still setting goals for myself. I have to. I would go crazy if I didn't. I'm looking forward to when I can finally stop wearing these old clothes and look presentable again. Well, so much for gabbing, I must get busy if I'm to accomplish anything today. Hope everyone had a good weekend.
05/25/02 Good morning! Yesterday as I sat in my car waiting to pick up Nigel, I listened to the school busses rolling in to their appropriate spots. I looked carefully at the school that for years longed to teach at. I watched as the happy children, on their way home for a long weekend were filled with excitement. I could hear their shouts of glee. The end of the school year excitement is building. I can hear and see it. The kids are getting louder, more rambucious. The end of the year is taking it toll on the teachers. I see the frustration of having too much to do in their faces. The end of this school year also marks the "official" end of my teaching career. I must admit that I had to fight back the tears. My retirement dinner is coming up on June 7th. My husband, both kids, my parents, and my sister and husband will be present for the "grand finale" to a career I loved--a career cut short by pd. This school year's end marks another important milestone-- my son's graduation to the high school. His gift is the redeoration of his room. So, as one door closes for the both of us this year, yet another door opens...
05/24/02 Good morning. Had a productive day yesterday. Got the trim painted and windows, first coat on the shelves and poster frames. Patrick is getting quite excited now. His enthusiasm is refreshing... The dystonia seems not quite as bad this morning. I am down to 1/2 sinemet 25/100 a day!!! My requip is at 2mg at 8 am, 1.75 at noon and 4pm. So far, so good. There is some tremor though, but the MDS thinks tweaking the settings of the dbs will get rid of that. I have no real plans for this holiday weekend other than the usual: laundry, cleaning, working on Patrick's room. My goal for today is to get the windows scraped, washed, and put the curtains up. If I get real ambitious, take the door hardware off and get the doors painted. If any of you are going to Joan Snyder's "shake, rattle and roll" this weekend in Illinois, please send her my love. Hope everyone has a safe, relaxing weekend...
05/23/02 Good morning to all!! It's great to be out of my chair and moving around again. I've never been one to sit in one spot too long. My son's room is coming along slowly. Today I am planning on doing the trim work. It just is such a pain in the neck having to constantly be moving furniture back and forth everyday, but he needs to use his room. The carpet hopefully will go in next Wednesday, so I'm hoping that by next Thursday, his room will be done! I've got a few sewing projects to do, windows and door to paint, shelves and poster frames to paint, his locker(when that comes) to paint, windows to wash, curtains to iron, a book- case that needs cleaned out and painted. Then it will be his turn to neatly(lol) put things back away. I need him to go through all his "stuff" and get rid of all the things he no longer uses, or cares about. That will more than likely be the hardest job of all!!! My med change is going slow too! The titration up of requip and down of sinemet seems to be helping. The changes are minute, but I notice a differenc. I guess that's all that really matters. Hope everyone has a great day!!
05/21/02 Good morning! I had a very productive day yesterday. I was able to get alot done in my son's room. The poor kid had to sleep in his sleeping bed as I had painted his head and foot boards on his bed. I have 1 main wall to paint, the trim work, and his two windows. Today, I should be able to get the final coat of black on his bed, the trim work behind his bed done, and the window next to his bed. I go for my massage therapy at 9:00 this morning. Then I'm off to check on carpet. Fortunately, his room is small-- 9x12, so I'm hoping that it won't be too expensive. I want to get that ordered, so that by the time of installation, the room should be done. I don't want him adding stuff till the carpet is in tho. That's less to move out. I'm keeping my fingers crossed that my stamina stays with me... I went all day without the ace bandage on my ankle. Yippee!! I guess it is finally healing. Hope everyone has a great day...
05/20/02 Good morning to all. My ankle is finally healing--it is still a bit sore, but I took the ace bandage off last night before going to bed. I have been painting my son's room-- so my muscles are a bit sore from moving furniture around. The room, as with anything I attempt to do is going slow-- especially to an anxious 12 year old. But it will get done. It is hard to believe that this is my kids last full week of school. They have next Monday and Tuesday off, then the final four. It will be nice not having to worry about packing lunches and getting them off to school on time. That is a great source of stress everyday, which I am usually wiped out by the time I take them to school. All of this work I've been doing is also triggering the dystonia. My toes are curled under, and the "claw" in my hand is annoying. It makes folding clothes nearly impossible! Hopefully, the MDS will be able to help me out. Hope you all have a great day!
05/18/02 Good morning. I got 3/4 of Patrick's room painted. The color we had picked out was grey, but once on the walls it looks more blue. It does look nice, but he is not so sure. I am in the process of painting his furniture a high gloss black enamel. I am also waiting on a used locker for his room. He is quite excited about that. I also ordered a bunch of Dallas Stars (ice hockey) merchandise for decorating details. He wanted to go with the hockey theme. I am trying to keep the room itself fairly neutral, and just adding the accesssories to make it a teen's room. I am in the process of inviting my family to my retirement dinner. I didn't realize that I could invite the whole family. My one sister is leaving for vacation that day, so she will not be able to be there. I would like it if my parents could go, but they are on stand-by if my kids refuse. I hope they all will go. My ankle is healing, but with all this rain we've been having, and cool weather, it's hard to tell. I would like to get more painting done today. I also need to go to the grocery store. I hate that job. Plus I need to time this all around my meds. The requip makes me sleepy, so I don't like to drive much. I had one incident several yrs ago, of nodding off while driving. I am so ready to get out in the yard. With all this rain, the weeds are taking control of all my flower beds. My perennials need thinned too. I hate that job, because unless I can find a taker, I must throw them away. Maybe I can contact the school for help there. They sometimes have kids looking for service projects to do--a requirement for high school graduation. My nephews are coming on Monday to help with painting. They start their summer jobs on Tuesday at the school. They will be doing painting, cleaning, etc. My niece starts her job next week at a hospital helping do research on Alzheimer's. She is quite excited about it--I hope it meets her expectations. Well, my husband just got up. This is his computer time too. I hope everyone has a good day...
05/16/02 The change in my meds is definately helping. I am now down to 1/4 25/100 of sinemet 3 times a day!! Already I am noticing less dytonia in my left side, as well as decreased dyskinesia. I am grateful that I have finally found a movement disorder specialist. I do have some tremor in my left side, but he feels that once we get my meds squared away, he can adjust the dbs to help that. The increase of requip I'm sure is helping also. But the only minor problem that I experience with that is about 2 hrs. after I take it, I require a nap. Fortunately, not working, that can be arranged. I also know when not to drive. In fact, I don't feel comfortable driving much at all. I have also noticed that as the dystonia is being relieved, my walking has become a little more "normal". The mds said that robotic walk is probably caused from the dystonia. I know even bend my left knee when I walk. It is still a bit too early to gauge any gait changes though until my sprained ankle heals. It is quite far to go to the movement disorder specialist, a 3 hour drive, but I think it was a good move. They have nothing but praise for my neuro, but yet they do change my meds around. He seems to have a better grip on the affect of the dbs/meds/botox routine which I have undergone. He also seems to understand what exactly the dbs has done, or can do, for me. I certainly hope this is a step in the right direction. I do want to mention that my friend, charles black, is under- going dbs today. You may know him by chasmob. Please keep him in your prayers.
05/15/02 I definately need to apologize to any readers who may have read my last few entries. My pd funk lasted a bit longer than I care to mention. Just sitting around in the chair with my foot elevated is driving me nuts!!!! I like to keep busy, and it hurts to walk on it. The change in meds seems to be helping with the dyskinesias and dystonia. Even my massage therapist commented that I wasn't so knotted up on my left side. She checked out my ankle, and seems to think also it is just a bad sprain. I ordered stuff to do my son's room next. He is quite excited about it. My nephews are coming this morning to help with the remainder of the painting in the hallway that would require me to be on a ladder. Being as tall as they are, they probably won't even require the stepstool. Dependeing on their schedules, tomorrow I may have them help me start on Patrick's room. At least help me move furniture around, would be great. His room is so small, it shouldn't take too long to finish.
05/13/02 Mother's Day was just as I predicted--awful! For starters, my youngest gave me alot of grief about getting up and ready for church. My husband gave me two cards. My mother, a true saint, had thought to get me things from the kids Bedtime brought the complete end to an awful day. After much prodding to get a bath, my youngest spilled a whole soft drink on the kitchen floor. Yes, it is still sticky. I was so frustrated after mopping up that mess, I went to bed. About 15 minutes later, just as I was about to fall asleep, my husband goes up to the bathroom to ask him what he is doing. He tells him water is coming downstairs into our kitchen, then goes back downstairs. I was furious. He didn't even bother to mop up the floor in the bathroom where it was trickling down into the heat vent. So there I am, mopping up the water on the floor, then trying to get the water out of the heat vent. And he tells me I am pushing him away. He did absolutely nothing to help. So, I now have a sticky kitchen floor and one ruined ceiling tile. I try so hard to keep up with the house, to make it look and feel cozy. Yet my attempts are not appreciated-- they are destroyed. For 2 cents, I'd leave and never go back. Yet I know my kids need me. There certainly would be no one there who would care. My stepson never called, my stepdaughter, who turned 16 yesterday, never called. I guess I am not such a good mother...
05/12/02 Today is mother's day. For me, it is a day that I honor my own mom. She has always been there for me--even through the hard times. Or should I say, especially through the hard times. When someone says sarcastically, "you're just like your mother", I thank them. I am not looking forward to this day, though. I know that today my stepdaughter turns 16 today. She refuses, for an unknown reason, to associate with our family. I blame my condition on alot of this. Don't ask me why. As a mother, this day has no real meaning to me. There are the school-made gifts or cards, but no special meals, gifts, or cards. So, it is just another day in my house. It is not so much the gift that counts, but the thought. What would be the perfect mother's day for me? My kids not fighting. My family coming together just for one day, and asking me what would I like for them to do FOR me. I am not really into expensive gifts. That would be a gift of the heart, time spent helping me. But that is my fantasy. I feel unworthy to receive such an honor. I do not feel as though I am to be honored in such a way. It is difficult for me to be the mother I need and want to be. Yes, I am having a pity-party. Today, I am feeling like a useless excuse for a human being. I am looking real hard today to find a reason to be happy. I know things could be worse. I've seen it too many neuro's offices. Yet, I'm just not my optimistic self today. I'm sure that once my ankle heals, I'll be up out of my chair doing things again. But until then, to put things bluntly, life sucks. I am tired of the fight.
05/12/02 Today is mother's day. For me, it is a day that I honor my own mom. She has always been there for me--even through the hard times. Or should I say, especially through the hard times. When someone says sarcastically, "you're just like your mother", I thank them. I am not looking forward to this day, though. I know that today my stepdaughter turns 16 today. She refuses, for an unknown reason, to associate with our family. I blame my condition on alot of this. Don't ask me why. As a mother, this day has no real meaning to me. There are the school-made gifts or cards, but no special meals, gifts, or cards. So, it is just another day in my house. It is not so much the gift that counts, but the thought. What would be the perfect mother's day for me? My kids not fighting. My family coming together just for one day, and asking me what would I like for them to do FOR
05/11/02 I called the movement disorders specialist yesterday. He wants me to start decreasing my sinemet. It may be a bit tricky though, as I only take 1/2 tablet of 25/100 four times a day. He wants me to try to 1/4 tablet four times. He thinks maybe he can get me completely off sinemet! I explained that my dystonia is not present when I first wake up. But about 2 hrs later, my left side is in spasm, and my right side is so dyskinetic, I am a hazard to myself. I am to call Tuesday and let him know how these changes are working out. My right ankle is taking forever to heal. I am getting sick of sitting with my foot up and wrapped. We have had a few nice days--I'd love to working outside. With all this rain, the weeds are quickly taking control of my yard and gardens! Why is it the weeds grow faster than the flowers?
05/09/02 My nephews came over yesterday. What a big help they were. They completely cleaned out my laundry room for me--so I am certain that my garage must be full! It is wonderful just being able to get through without fear of tripping over anything. They were such sweethearts, they even swept up! And they absolutely refused money. Who says kids today don't care? Patrick goes on his 6th grade class trip to Baltimore. Unfortunately, today it is raining. I'm sure he'll have good time regardless. I wish that I could have gone--but there is no way I'd be ablr to keep up with a bunch of excited 12 year old boys!!! Well, hope everyone has a great day!!
05/08/02 Good morning all... Today my college nephews will be coming over to help me move junk from my house. I told them I'd pay them for their help--college kids are always in need of earning extra cash, and I am in need of helping hands. They are two delightful young men willing to help. Yesterday, I was feeling like the walls were closing in, but so far this morning I have new hope. It seems that most days, I awake energized, but once my kids are up, they zap my strength and stamina. They fight and bicker, as only siblings do, but it is still more than I can handle. Their rooms are disaster areas. Then they feel they can start in on the other rooms. School will be out soon, and I'm not looking forward to that. I enjoy and need the quiet. Don't get me wrong. I love my kids dearly, but each year I am hopeful that they will help out more, and each year I am disappointed that they don't. I need to start getting stuff around for the bathroom remodel project the end of June. I do think I'll call today for some estimates. So much to be done, so little energy, time, and money...
05/07/02 I think my sprained ankle his finally beginning to heal. It is still in technicolor, however, and I must continue to wear the ace bandage to get around. But at least I can do that with some ease, until the slight dyskinesia or dystonia becomes bad. Then it disturbs my whole balance. My dad called me on Sunday to inform me that his brother died on Saturday. My dad has lost his mom and 2 brothers since Christmas. He died in his sleep--so it was peaceful. He had a lung transplant almost a year ago and was doing remarkably well--even considering returning to work. So, it came as a bit of a shock. My nephews are home from college--ready to help me clean out the attic. First, though, I must get stuff weeded through- what stays and what goes. Then they will help me move boxes to wherever they go. It is a task I must admit that I am putting off. My kids get up there, and make such a mess. Time for stuff to go. We will be having a doosie of a garage sale this year, for sure. Whatever doesn't go, I will be getting rid of one way or another. I'm sick of this clutter in my life. I have a hard enough time keeping up with the barage of stuff one uses on a daily basis.
05/04/02 I apologize before I even start writing... I HATE THIS PD STUFF!!!! I took a tumble Thursday evening and sprained my ankle. Unfortunately, it was the only good foot I have. In my fall, I knocked over and busted up a bookshelf. I must learn to walk around things, instead of stepping over them. My kids were great yesterday getting ready for school. They are good kids. I'm lucky to have them...
04/30/02 I believe that as I increase the dosage of requip, it takes a toll on my body. I get very drowsy about an hour or so after taking it. My nightime sleep is affected by waking up around 2-3 am soaking wet with sweat. Oh well. My 9 yr. old went to see his neurologist yesterday. This poor child was dxd with so many things yrs. ago: adhd, obsessive/compulsive disorder, oppositional/defiant disorder, severe expressive language disorder, shall I continue? I have noticed tics emerging: he pulls out the hairs on his body and eyes, he makes facial grimaces, he does alot of throat clearing. His teachers have noticed him biting his arm. Nigel is a delightful child: creative, thoughtful, sensitive to the needs of others. This is when meds are on. Without medication, however, he becomes the demon child--he screams, injures people and himself, destroys items. These actions are unprovoked. He has threatened to leave home, and has even pushed me in a fit. It was interesting to watch his neurological exam yesterday. The dr. was very patient with him. When I asked him if he thought Tourette's Syndrome was a possibility, he shook his head yes. So, today we begin a new medication. In 4 weeks, the neuro wants to see him again, and make a referral for Nigel to go to a psychiatrist. Today will be a busy one for me. I go for my massage therapy in the morning, then lunch at a felow parkie's home, tonight will be the big one though. The wake for a high school friend who was killed in a house fire. I usually make a fool of myself at these things. But I feel that I should go for the family's sake. Mike was a wild thing in high school--he had 9 lives and finally it was a fire that took him. He was so scarred from motorcycle and car accidents that he had been in. This family lost their youngest son in a violent car crash a few years back. I also just found out that their infant twin grandchildren died. So, I feel I should pay my respects. I will be going with some other friends with whom we meet for dinner on a monthly basis. Good friends stick together.
04/28/02 Good morning... Lately I am again feeling like the walls are closing in around me. My house is filthy. My kids fight constantly. My husband is depressed. I get tired of always being the one who has to keep going here. It seems the harder I try, the worse it gets. I am growing weary of painting/sanding/cleaning. Yet I feel this urgency to get it done ASAP. It is kind of like the "nesting" stage pregnant women experience. Getting everything in order before "the big day". I experienced life with "end stage pd". And I know that my biggest fear was that I had not yet completed my goal of getting through the whole house. I feel this urgency, mostly because alot was left go while I worked with pd. I would come home exhausted, and I had to prioritize. The condition of my house, unfortunately was one of the last. So, after years of neglect, I've got my work cut out. This house requires so much work to be done, as most 80-year old homes do. But, unfortunately, $$$ to have the work done is not there. My sister's boys hopefully will interested in helping me out. I am willing to pay them. This is where I get angry. I feel that with a husband, and 2 boys at home, I should not have to pay someone to help. Yet I know the reality. My husband refuses to offer assistance, and becomes annoyed if I should ask. I've worked very hard at learning to ask for help. It is not in my nature to so. Yet, I know what I can and cannot do. I know, recognize, and understand my limitations. That does not mean I like them, by any means. Oh well, so much for feeling sorry for my situation. This is my life now. I've come to terms with it. I can't make others care...
04/26/02 Good morning.... I continued working on weeding out the closets and getting some sort of organization to them. The carpenter is coming today to install "leftover" pieces to my attic stairwell. Anything done in there will certainly be an improvement of what already exists. There are hunks of drywall literally taped on the wall, then painted over by the previous owner. I realize that nothing in life is perfect, but that is even a bit too imperfect. I am getting anxious at the prospect of my house finally getting finished. I have a few more accent pieces to add to my room. Touch up painting in the hallway and stairs to be done. My boys are getting excited about having their rooms done. I think I will let them help me with that. Perhaps if they do some of the work, they will understand that it is not easy and will keep their rooms in better order. My sister's boys will be home from college soon, and I spoke with her about hiring them to help me clean out the attic before their summer jobs start. Going up and down the attic stairs carrying boxes is more than I can handle. Plus, who wouldn't enjoy the idea of tax-free $$? I want to get the attic cleaned out and closets revamped before Memorial Day weekend. My goal is to have our garage sale that weekend. Then work can begin on our bathroom. I need to update that to make it more pd-proof. Daily goals are much needed to keep my sanity. My husband asked me what will I do when the whole house is done. I reassured him that there will still be plenty to do....
04/25/02 I got my closet finally organized!! I love our new room and closet. It is so much easier to get to stuff. I need to finish cleaning out the other two closets now. Yuck! I went for my massage therapy yesterday--that helps so much with relieving the pain from the dystonia. It is amazing how she can put pressure on those trigger points and even relieve some of the tremor. I got my letter from the school district yesterday accepting my resignation. I also received my invitation to my retirement dinner. Yes, it was a tearful moment. Thinking back to how I had to bust my butt to pay for my education--and now my career is officially over...
04/23/02 I was able to complete some projects today. As I tried taking my catnap today, I had just fallen asleep when the phone awoke me--only to be someone trying to sell my stepson a credit card. Needless to say, I was not very pleasant. I did find a way to get them to hang up in a hurry--when she asked how I was, my reply was "not good". She immediately hung up the phone. My nephew is a "starving artist" in NYC. I just got an email from my sister that the actor, Bill Paxton, just bought one of his paintings. I am so proud of him. He is originally from Georgia, the did his master's work at the PRATT institute. Living all alone in "the big apple" must be difficult. He has been the victim of one mugging and two other attempts. So, he definately deserves a break. Anyone interested in abstract art--his name is Andrew Piedilato. Sorry, but one proud aunt here....
04/22/02 It feels great being able to move again. I am slowly rebuilding my energy reserves after last week's episode of being turned off. My closet organizers arrived today, so tomorrow I would like to start to get that taken care of ASAP. I am glad the weather has cooled off some. I like warm weather, but going from 40 degrees to 90 degrees, then back to 40 again is a bit more than this body can handle. Went to see my regular neurologist for a follow-up visit. Basically, he is a bit interested to see if the dystonia is relieved by the increase in my Requip. Yes, I am still a baffle--he still cannot figure out why my walk is so untypical of pd. Just have to see, I guess....
04/18/02 Good morning!! I am back in the land of the living again. It seems that somehow the left stimulator was shut down-- thus the resulting tremor. The right stimulator was in magnet mode--meaning the voltage was varying. The MDS and his assistant were great! His plan is to keep the stimulators at the same voltage, but to increase my Requip to (hopefully) reduce the dystonia in my left side. He reassured me that I just have pd!! No MSA or PSP. He did remind me that obviously through my neuros carefully, well documented records, that mine is a tough case to control, but he felt that so far, all decisions in managing my pd have been justified and thus correct. So, I guess I am a lucky woman to have found such competent physicians. He also gave me a copy of Dr. Lieberman's new book to take with me. He reminded me that I have a great sense of humor and a great outlook, both which are key. He said that I was quite knowledgeable about this disease (both a blessing and a curse). Well, I left his office feeling well enough to go shopping at a quite large mall. After my 4 hour drive home, I walked to my mom's so she could see that I am much better now. Mom's need to see, not just hear that things are ok. So, today is a back to reality day. I want to check with my massage therapist to see if she could possibly squeeze me in to help soothe my sore muscles. I need to return my CT scan to the hospital. Then, I might just read that new book. Hope everyone has a good day...
04/16/02 Good morning. Things have not been going well for me. Since Saturday, I have not been able to move. The tremors (both sides) are back. Freezing is a common occurance. Trying to move any part of my left side is extremely painful due to total dystonia. I am scared at how quickly this all came about. I go see the new movement disorder specialist tomorrow. Not soon enough for me.
04/13/02 I hope no one minds, but I prefer to let Scott Stapp of "creed" speak for my journal. Weathered I lie awake on a long, dark night I can't seem to tame my mind Slings and arroows are killing me inside Maybe I can't accept the life that's mine No, I can't accept the life that's mine. Simple living is my desparate cry Been trading love with indifference yeah it suits me just fine I try to hold on but I'm calloused to the bone Maybe that's why I feel alone Maybe that's why I feel so alone Me...I'm rusted and weathered Barely holding together I'm covered with skin that peels and just won't heal The sun shines and I still can't avoid the light I think I'm holding onto life too tight Ashes to ashes and dust to dust Sometimes I feel like giving up Sometimes I feel like giving up Me...I'm rusted and weathered Barely holding together I'm covered with skin that peels and it just won't heal The day rreminds me of you The night hides your truth The earth is a voice Speaking to you Take all this pride And leave it behind Because one day it ends One day we die Believe what you will That is your right But I choose to win So I choose to fight To fight From the cd Creed--Weathered
04/12/02 Good morning! My carpenter is finished with his work in my hallway, adding a 2 new closet doors, installing drywall over existing botched plaster walls, installing a new light fixture--one i can easily change the bulb. Now my work begins of painting 6 doors and associated trim. I want to get another coat of paint in my closet before I begin loading the closet back up. The good thing about doing my closet this time of year is that I might as well put away winter clothes now, and bring out my warm weather clothes. My oldest son wants me to do his room next. His room is quite small, so it should not take long to finish. He wants to go with a hockey theme. Being 12, I don't want to go overboard with that theme, though. I know how quickly kids tastes change. So, I want to go with fairly basic colors, etc. These house projects make such a mess. There is dust everywhere. But I know the end result will be worth the mess now. My husband gets impatient, but fortunately, that is one of the benefits of having pd. I've learned that my life will go on, even if the house is a mess. Eventually all will get cleaned up. These house projects keep me going. It is my physical as well as emotional therapy. People are amazed at how much I've accomplished, just by doing a little everyday. The quiet time has been my meditation time. This is when I pray, reflect on my priorities in life, ponder my future and how we are going to manage. This is also when I count my blessings, which there are many. Tomorrow is the first day of trout fishing here in Pa. So, I know that pretty much the weekend will be mine to finish cleaning up. Roger and Nigel will be out fishing most of Saturday. Well, hubby is up now (5 am), so I can go upstairs to begin more painting. Hope everyone has a great day.
04/11/02 Good morning! My appt with the movement disorders dr. is approaching quicker than I thought it would--next week. I called yesterday to confirm my appointment--the receptionist was not at all pleasant. I am hoping this is not a bad sign. When asked if she had received any of my records, I was told no, so yesterday I went personally to my own neuro to hand take my records. I need to get my CT scan from the hospital. It was interesting to read my drs notes. From my first visit to the most recent. Probably the most interesting info I learned is that I have been dealing with this dystonia for 8 yrs. It is interesting, also, to read how this disease can remain stable for a few months, then a decline. It was still hard to read dx: end stage parkinson's.
04/02/02 Today is my son's 12th birthday!! Where does time go? I remember that day so well...We were both so full of life and wonderment then. I wasn't aware until a year later that alot of my pd symptoms were beginning to show themselves during my pregnancy, and even before that. I sit here now, with tremor, typing with only one hand, unable to make the other move at all. The pain in my arm and legs is unbearable. I have difficulty walking. I have become the Tin Man. Yes, I have alot of heart, just at times I have difficulty expressing it. I have become the Scarecrow also. Although I have a brain, sometimes I wish I could trade this one in for a new one. My Wizard (surgeon) has done all that he can, but maybe there is something new on the horizon. And as far as the Lion goes, I've got alot of courage. I get up each day and stumble to find it. Without courage, I would not be able to continue this terrible journey. Yes, I have tried clicking my heels to go back home, but I think the problem is that my foot, with toes curled under, will not fit into those magical red shoes....
04/01/02 Hope everyone had a good holiday! Hubby returned from Texas last night. His trip was a rainy one. He was quite surprised to find the bedroom almost finished. A rainy day here in Pennsylvania. Not sure what will be on my agenda for the day, since the kids are home today and tomorrow. My oldest will turn 12 tomorrow. He is having mixed feelings about things. He couldn't understand why there was not a "special" Easter basket for him. I tried to explain that's part of getting older. I'm glad I'm through that age. I remember when I turned 12, I wanted a basketball, but got a Barbie instead. My feelings were hurt. So, my son gets a basketball he wants from his granny, and I told him I would take him shopping for what he wants. The boy is growing up-- he wants clothes!! If anyone had told me last year that he would want clothes, I would have laughed at them. Oh well, go figure...
03/29/02 My hubby leaves in 2 hrs to visit my stepson for the weekend. He is finding a million reasons why he shouldn't go. I just want him to go and spend some quality time with him. It was just the two of them for so many years before we married, so I think it will do them good to be together. My son is having a sleep-over tonight for his birthday, which is on Tuesday. He is so disappointed that some of his friends are not able to come. Lucky me!!! My other son is going to a bowling party tomorrow night, but I've asked my mom to take him. He's never bowled before, and I just don't think I can quite handle trying to help him.. I've made alot of progress in our room. It is starting to come together rather nicely. I still have alot of furniture to paint, though. I have all the windows and trim to do, new blinds to install, curtains to iron, shelves to hang. Only then can I begin the task of weeding out junk, and repacking stuff (momentos,etc) for further storage in the attic. Then I get to paint the closet. I am hopeful that the carpenter will be able to come next week to install the new closet door and shelves, and add the sheetrock to the hallway ceiling. People ask why am I doing all of this? I need to keep my mind busy, or major depression will set in. In addition, I am afraid of what the future holds. How much longer will I be able to do this???? I filled out my aplication for disability retirement from teaching this week. I was told that since I am already receiving social security disability, there will be no problem in getting approved. So, I guess I'm retired as of June. Not quite how I planned my life, but I am grateful that I have had a chance to do most of what I wanted in my life. This has not been a good year for my family, as far as health is concerned. My dad's family went through 2 death's and one serious illness. My mom's family is also dealing with not only my condition, but my aunt is gravely ill, while her 35 yr old granddaughter is suffering from a rare form of cancer. I hate this getting old. Seeing loved ones suffer. Then I am reminded that God offers us eternal peace. This being Easter weekend, I reflect on how Jesus had to suffer alone. Friends turned their backs on Him. I am thankful that I have my family and friends love and support through my struggle with this!!!!
03/21/02 Spring has officially arrived, but the cold weather here in Pennsylvania would not allow us to realize the fact. Each week for at least the past month I have been buying tulips in hopes that it will somehow "cure" me. I guess I am out of my pity-party stage. It's back to painting, now. I've arrived to the second floor. My room is next. I want to let it be a place of refuge--peace and tranquility abounding. The closet is bare--ready for me to paint and put closet organizers inside to store our belongings. There are many boxes of "stuff" that I need to go through and prioritize what to keep, what to move to a new home, what to sell at the garage sale, and what to just pitch. Once again, keeping my mind and body engaged is my goal. I find that I don't much feel like shopping these days, as it requires so much energy that I return home exhausted. But I must get out to look for my special "treasures" for my room. Curtains, nightstands, lamps, etc. are needed. Walls and furniture to be painted. Hardware for the furniture needs to be sought out. You see, our house is a mixture of this and that, now it needs to be made to all fit together in a way that somehow matches. Am I up for the challenge (?) is the question. My husband is planning on going to visit our son in the army next weekend. I thought he would relish the time alone with his son. But because of my physical condition, he is hesitant. I keep telling him that we will be fine here. There are alot of caring neighbors, not to mention family close by. I know, though, that he is as scared as I am in regard to our future with pd. I told him I'd understand if it is a bit more than he bargained for and wants to bail out. It's not really what either of us want, though. We want "the cure", and we want it now.
03/17/02 The results of my mri showed no stroke, only spots of brain degeneration. So now what? I got an appt with the movement disorders specialist for next month. So, I'll have to wait to see what he has to say. My husband is having a very hard time dealing with all of this. I need him to be strong for me right now, but instead I find that I am the one trying to comfort him. Maybe that's his tactic for getting me to look for the bright spot of all this. Friday, I went outside and cleared all the dead flowers and leaves from my flower bed where all of my spring bulbs are located. I needed to see that life emerges from the dead wood. Yesterday I cleaned out a bit more of our bedroom closet. I hate having to get rid of so many pairs of shoes, but I just cannot wear them with my toes curled so bad. Not sure what today will bring.
03/15/02 My appt with my neurosurgeon produced some major concerns. Neither my dr nor the rep from medtronics feel that the dystonia/walking are pd related. Basically, they are not sure what is wrong with me. I was sent immediately for an mri--which was scary due to having the dbs. But I was completely shut down beforehand, and I survived the procedure. I call later today for the results of the mri. I was also referred to a movement disorder specialist who is trained in dbs programming, and area of expertise is pd. I called yesterday and will be seeing him next month. So, all that said, my mental state of mind is kind of in limbo right now. I am not sure what I should be feeling-- but I know that I am scared! I do not like this helpless feeling. I certainly will be updating, as things progress literally).
03/12/02 Tomorrow I visit my neurosurgeon to see if he can make adjustments to my dbs. I never realized how much one needs the use of both arms to function in life... I hate being so dependent on others. I asked my husband to drive our kids to their dentist appt today. I just don't feel comfortable driving. My dad was going to take me to my dr. appt. tomorrow, but he is very ill, so my nephew will take me. My nephew is home from college on spring break. I am hoping my weekly massage therapy today will help get me through until tomorrow. I hate complainingto my mom and dad. I fear that my dad is so ill that death lurks around every corner for him. Physically, he is dealing with copd, and has his bladder cancer in remission. But emotionally, he has to deal with the death of his mom (3 mos ago)and his brother (2 wks ago). His youngest sister was in the hospital suffering from respiratory failure as well as a heart attack at the time of my uncle's passing. My dad has had a difficult time of it because all of his family lives across the country, and his physical health prevented him from being there to offer any help. I am afraid that he is giving up. So, in comparison, I feel bad complaining about my problems. I am not willing to give up yet, but I don't really know how much more pain I must endure. I've often said that life is hell on earth, and if you deal with what God hands you well, when you die you go to heaven. If not, you must return to earth again. That to me is what purgatory is. Try it all over again. Well, I know I am depressed. I readily admit to it. But I will pull out of it, as I have in the past.
03/10/02 Good morning. I go Wednesday to see my surgeon to see if an adjustment can be made on my dbs, so that I might be able to function again as a fairly normal person. The dystonia in my arm is unbearable. I can't do anything without being in severe pain. I am afraid. Afraid that, like my foot, there will not be much that can be done. I try to be optimistic, but the reality is that there is that chance. I have so much to do yet. And if this is the way that I am going to have to live (in constant pain), then I wish that God would just take me now. I am getting weary of travelling on this journey that does not seem to end. For those who may be reading this, yes I do take antidepressants. This is about pain, not depression. As some may know, I've been trying to make my home more pd friendly, and in the process, a more comfortable a home for me to live in. But I still have a long way to go in reaching that goal. I've just now gotten to the second floor. I still have so many rooms left to clean out all the junk. And then there's the attic. God, please just give me 6 more months of mobility, if you are going to take that away from me. Please allow me to finish the task I've set out to do.
03/06/02 Hi!!! I go for my weekly massage today for the pain from my dytonia, which has now spread to my left arm. It is really frustrating to be in pain most of the time. I am considering acupuncture as well. Those little needles could not possibly be any more painful than the botox, injections I was receving, which didn't work. I feel so old. It seems like the worse I feel, the harder I did into a project. I cannot allow this to completely control me anymore than it has already.
03/04/02 My body has betrayed me!! Those were the words I used when my husband asked me yesterday what has been bothering me lately. I am angry at being robbed of my youth--I am only 44, but I feel and move like I'm in my 90's. I don't like the fact that my career is over, when most people are moving on with their's. I don't like the stares of people as I pull into a handicapped parking space. Usually they are long gone before they see the effort it takes me to get out of the car and attempt to walk into and through a store. I am completely wiped out after just one store. So, completing errands takes me forever. I miss the days of hopping in a car and visiting antique shops. I steer clear of any store with hoards of knicknacks. I fumble around so much. I am angry what my life now has done to my family. I can't go to the places my kids would like me to take them--they call my mom now. It just isn't fair!! I dream of running. Anywhere. I dream of being able to walk along the beach at sunrise. I dream of dancing. I dream of exercising (step-aerobics and playing racquetball). Then I awake and realize that those are memories now...
02/26/02 Good morning to all! I am feeling overwhelmed by basically everything. Did you ever get the feeling of having no control over anything in your life? I am definately a control freak, but lately it seems life is passing me by without even giving me a chance to have a say in any of it. It seems as though I take one step forward and three steps back (literally). I feel so betrayed by my body. I have so much I want to do, and my body just stops. Quite frankly, I am sick of it! Hopefully I'll get it all together--SOON. Hope everyone else is doing better...
02/24/02 Good morning to all!! Today should prove to be interesting, as my carpentry talents will be put to the test. My husband put the drywall up in our stairway, thus lowering it for me so I can clean, paint, etc. So now comes the fun part of sanding (yuck), and more joint compound put on the wallboard. That I don't mind doing. But his going nuts with anxiety because he has been in the project for a week now, and it is still not complete. I am grateful pd has taught me that Rome wasn't built in a day. I do little bits at a time, so it is a slow go, but I usually accomplish what I set out to do. So, I will do drywall today. Yesterday was not a good day for me. I left early for the grocery store, and by the time I got home, I was so stiff, I could hardly move. Needless to say, that was all I was able to get done for the day. But, as they say, today is another day....
02/18/02 Good morning all!!! I have not slept well the past few nights. I think that I have been over-tired, as my body is actually sore. My hubby decided that he would lower the ceiling in our stairwell for me. It is a job that I wanted done. However, I thought that my husband was planning that for this upcoming weekend. So needless to say I hustled to finish getting that old painted wallpaper off so he could frame up the ceiling. At least it is finished now. I informed him of my other plans for the house--all to make it easier for me to get to and maintain. He sat quietly as I pretty much went room-by-room. He only raised his eyes and questioned one of the upcoming projects. Nothing can be done overnight. It will take time for me to get stuff done, as well as saving $$$$ to get it done. But for today, pretty much cleaning the house. It is so amazing to me how easily our house gets so dusty.... Have a great day all!
02/16/02 I had a visit with my neuro on wed to check on my new meds schedule. I think that the change has been good. I've also been going for massage therapy for the dystonia in my foot--it is helping so much so that I asked him if I could cancel the next botox injections--he said yes. I was a bit surprised thogh that he ordered a ct scan. He is quite concerned about my inability to walk "normally". He informed me that my walk is more typical of a stroke patient that pd. So, yesterday I had the scan done. The technician was very nice. Of course I informed him immediately of the dbs. When he was finished, I asked him if it was possible to view the scans myself. I was so neat to see all that hardware still in my brain!! I've been sleeping very well this past week, except for today, I was awake at 1:00 am. I lay in bed until 2:15 before I reallized that my sleep for the evening was probably done. My ribs are still sore, but I can at least manage to get around without constant pain. I fell against the side of the tub last week while I was cleaning the bathroom. It seems as though I always hurt myself when I clean it!! I also asked my dr. to fill out the medical report so I can file for disability retirement from my job. Of course, I read what he had to say. He listed my pd as being in the "end stages". Just seeing that gave me a BIG knot in the pit of my stomach. I meet with the retirement board next month. Well, hope everyone has a great weekend...I am not sure what exactly I will do for the next few hours....
02/10/02 I have been awake since 1:00 am!! I am not sure why my sleep patterns are such a mess lately--is it the pd or just my cold? I just can't seem to get comfortable once I'm awake. This is driving me nuts! My husband says he's concerned that since I stopped working that I'm tired all the time. Some days I truly am exhausted. Other days I work around the house for 5 or 6 hours before resting. I think that I am doing the best I can. I listen to body, and when it says go, I do. When it tells me to stop, I do. How do I know when it is time to stop and rest? When I lose my balance and fall (or almost), when my speech becomes slurred, when walking becomes extremely difficult. I feel like sometimes I am under a microscope, being watched almost too carefully. Certainly if I have trouble when I'm not working, how on earth could I possibly hold down a job and maintain my family and home without seriously compromising my physical and emotional well-being??????????
02/08/02 Good morning to all... A former student of mine was killed a few days ago, with his twin sisters having been flown to the trauma center where they remain in critical condition. I write of this because life is so short. We must live everyday (no matter how bad we feel)to its fullest. Yesterday I went to speak with the school administrators where I taught. I felt I needed to inform them that I will not be returning back to school next year, following my medical sabbatical this year. I look at my quality of life as it is now, and it would not be the correct thing for myself, my family, or the children in school for me to return. Sad, yes. But as they say, "one door closes, and another door opens". I would still love to be involved with children, perhaps serving as a volunteer. No pressure to plan, if I am having a bad day, no problem staying home. But that is months away. I need to fill out my application and I meet with the retirement board in March. So, I guess it's official (soon). I never thought of retirement being like this. I always thought I'd be ecstatic when the time came, not sad. I had visions of doing so much during my retirement--taking long early morning walks, doing craft projects, reading long novels when I choose. Reality is-- I still have two young children to get to and from school everyday, so much for the early morning walks.. Craft projects can be completed, but one project may take alot longer to complete. Reading long novels usually puts me to sleep. Yes, I get frustrated. But who knows what our destiny will be? And so I will continue to take life minute-by-minute. And I will continue to try to make the most out of each minute...
02/06/02 I've taken the better part of this week to try to shake off my cold. My oldest son has been home all week with pneumonia. So needless to say, I'm feeling a bit like a "worthless" excuse for a human being. I have tons to do, but just no stamina to get it done. I guess I'm having a "pd" off week...
02/04/02 It has been awhile since I've posted an entry. It's not that I haven't had much to write about, but I have had this terrible head cold this past week. I continue to work on my home. I decided last week to begin to remove the layers of paint that lies on top of old wallpaper. This is a very tedious procedure, not to mention messy, but I think the end result of no lines of old wallpaper will definately improve the appearance! I have one major problem though. I am just barely over 5 ft tall and cannot reach the very top of the walls. So, what is done, looks a might bit odd with this 1 ft. strip at the top. I'll need to enlist some help with that. My husband is getting aggitated at my continued efforts to continue to do all these rooms. But I realize that this may be my last chance to do alot of decorating on my own. In addition, hiring someone to do all this would be very expensive. And my funds are quite limited being on disability. I enjoy decorating, and I want to continue to do what pleases me. Unfortunately, I have been so busy with projects, that the rooms that are finished are in need of a serious cleaning. So, I guess today might be a good day for all-over cleaning. My oldest son has the same cold I do, so he'll probably spend another day home from school today. He's getting old enough though that even when sick, he'a a pretty low- maintainenance kid. I've been going to massage therapy for my foot dystonia. I've noticed some marked relief!!! Well, looking at the clock, I realize that I need to get the little guy moving, which is my major accomplishment of the day. Hope everyone has a great day!!
01/24/02 Today is the 18 month anniversary of my dbs operation. Yesterday I had an appt. with my neuro to check on my recent adjustment. My mom went with me for moral support. My doc was very pleasant, professional, and more himself than he has shown in a long time. I'm not sure if it was mom's presence (seeing a mother accompany her daughter with pd), but it was a relief to finally see him willing to work WITH the other drs treating my illness instead of competing against them. I am a bit tired this morning--I slept on/off in the chair last night. My husband has a cold which I cannot afford to catch. I have so much to do--and it takes me forever to get over those nasty illnesses. Well, looking at the clock, I see that it is my least favorite time of day--time to get the kids up and ready for school. So many days I am completely drained by the time I get back from taking them to school. Have a great day everyone!!
01/20/02 It has been awhile since I've had the timing just right to post an entry. I'm thrilled that the FDA has approved DBS/STN! I hope others can now enjoy life a bit more "normal" without the hassles of fighting insurance companies to get help--that was not fun for me. I am in the process of finishing my living room painting/ cleanout project. I think it will be a couple more weeks and my entire first floor will be comfy/cozy. You know, when I used to think about retirement, I envisioned my children grown, early morning walks, plenty of time to do things that make me happy. But here I am, at the age of 44 contemplating disability retirement. My childrennnn are still in elementary school, walking has become difficult, and many of my hobbies have become jobs that require much effort on my part. So now it is time to revisit my future. I've learned that life with pd requires the correct timing of meds. I have learned that it is ok to do just a little bit at a time. I am my own keeper of my time, and if it gets finished today--great. If not, it will still be there tomorrow, next week, and even next year if I allow it. This is a true revelation for me. I always had jumped into projects with both feet. Work, work, work until the task is done. Having pd, in a way, has been a blessing. I've learned to seek out the joy of any good moment and memorize and cherish those moments--it helps get me through those "rough" times. Having pd has also made me truly understand the saying, "it could always be worse." After spending 100's of hours in neurologist's offices, and at various hospital's, yes it could always be worse. In today's economy, I am thankful we have a home, food, heat, loved ones to lean on through troubled times. Not all in the world are as fortunate. So, I guess this journal entry turned out to be more of a Sunday sermon--"Today is the day the Lord has made, let us rejoice and be glad!"
09/04/01
Well, the kitchen is still in a state of disarray, but I feel that I am making some headway. I've got 2 of the ready-to-assemble cabinets together and painted. Now I've got 2 more to get in that state as well. A couple more days of waiting for the paint to set up, and I'll be able to start getting things put away.
My sons like the idea of not having to reach up to get dishes out--that was all part of the plan. I was getting to the point where I was afraid to get those dishes out for fear of them tumbling onto my head.
My plans for today are to get casters for the cabinets, and get contrasting color paint for what will now store our pantry items. No more reaching up for dangerous items.
The building contractor came on Friday to give me suggestions--what will work best to keep the "old feeling", yet make it easy for me. As his wife has pd, he understands my needs, yet also knows how hard it is to remodel on such a limited budget.
I like the new set-up of this site. It seems to load up much faster now!! My kids head back to school after a long weekend. The weather this weekend was very fall-like. So in a bit cooler, less humid weather, I am feeling much better. I just hope that my energy level continues to hold up until I get the kitchen done....