chosh

Chosh's journal

archives

Losing touch with people Today’s entry has a title to give it some importance. I regret to say that recently I have lost touch with some people

–even people on this site. It has not been intentional or due to any particular event, but is simply a result of not staying up to date by writing

or messaging. I apologize to those who I have neglected and who may think I have fallen off

the face of the earth. I have no excuse. I am not angry, upset, or ticked off with anyone, not depressed or not incapacitated.

(But lest you think I may have become complacent about Parkinson’s Disease, I can assure you that will never happen!)

Perhaps that good news may play a role in my not being here as often. I am much more involved with local volunteer work

these days and, aside from being over-extended at times, I find it satisfying to once again have a meaningful “role” in life.

The lack of dexterity in my right hand makes typing awkward and I tend to avoid it in favour or speech unless I am forced to

type. I simply cannot keep up at times. I am learning to type one-handed, just as my left hand too begins to develop a mind of

its own – ViaVoice knows I’ll be back. Hope the technology improves by then. I am not into "slow". And …… the real

secret, I play Yahoo euchre online lol. Despite privacy setting, when my computer is on that site and I forget to log out, I

show up as “on line”. I almost always neglect to log out. Honestly, although it may seem otherwise, I do not have time to play

euchre all day. You can tell if you watch my game. We should have a special chat for all those who have want to renew

acquaintances and feel guilty about not contacting friends. Will we all fit into the room at once??

I am so tired today that I put this in the comments page first. So if you'd like to read it again, just march over there and you'll

get it in stereo. October 28, 2001 03:19 PM Yesterday for some stupid and bizarre reason I decided to see what would

happen if I failed to take my medication and how long I could go without it. Don’t ask me why. It’s just one of those crazy

notions I have every once in a while. Denial? Curiosity? Stupidity? Who knows? The end result was an all –nighter (couldn’t

relax to sleep) spent doing odd jobs in an inefficient way and sitting rigidly at the computer playing euchre with a bunch of

New Zealanders. It was also a painful night. Now we all know that Parkinson’s is not a painful disease, so it must have been

some other “factor” that cause my limbs to feel like giant boulders being pried away by shovels every time I moved. My neck

felt like it could snap off my body if pushed too hard. I looked like a bad slow mo movie. I lifted my right hand with my left

and my right foot acted like a block of ice. When I couldn’t stand it anymore, I took medication (after about 14 hours) and got

to bed about five this morning. Now, don’t you all go and write to me, bawling me out for my dumb actions. I already know

that. I only write about it so that you can see that there is someone out there who is nuttier than you. lol Something in my

nature makes me have to check every once in a while to see if I really am progressing and at what rate. I am never surprised

to find that I am, but it is always a reality check. Some of us learn the hard way, I guess. Pain is becoming more of a factor

for me and is not controlled by medication. It seems to be caused by the rigidity and the awkward way that my body balances

itself. It starts off as a dull heavy ache and progresses to a sharp heavy ache and muscle spasms. Anyone have any experience

with this? I doubt I’ll be discussing it with my doctor how I didn’t take my meds for half a day, as he won’t appreciate my

reasoning and will likely tell me off. I think my pain threshold might be getting lower. Is that possible? Today is a really bad

day, I presume, as a result of yesterday’s escapade. I guess it will be a long while before I need to do that again. Meanwhile

I haven't been here for a while and need to spend an evening catching up on everyone very soon. The prospect of being

"archived" has caused me to return but hasn't yet given me the motivation to actually produce anything in writing.I need a

There is lots to write about and I have a brand new journal, so I must give myself a kick in the butt. I shall return.

Another sudden thought - My diagnosis is now over three years old and I think I may have settled into the "routine

unpredictability" of living with PD. It's getting boring and I think I'd like it to leave now. How close is that cure?

Thanks for putting the warm fuzzies back in my life. Where would we be without them? Positive messages are sometimes

forgotten in the bustle of life, but a small thought and short message can sure make a big difference to someone else. Thank

This year's birthday went by without much fanfare. Milestones seems to be a reminder that time and PD march on and I feel

less inclined to acknowledge that. Silly really, since it happens anyway and all the denial in the world doesn't change a thing.

I have been reading a newly published book about PD and, although it is thorough, honest and up-to-date on the latest, I find

myself "skimming" down the middle of pages to avoid reading what I don't want to see. Also silly, because I sort of see it

anyway (lol) and just move it to the back of my brain, where it sits waiting for a quiet time to jump back in.

It's Thanksgiving weekend here in Canada. I am not in a very thankful mood, I guess. Holidays and celebrations leave me

feeling reflective and melancholy, not to mention worn out emotionally. Fortunately I have some excitement to look forward

to this week; Visitors from PLWP coming to Canada and the Parkiepalooza dance. That will lighten me up for sure.

The warm fuzzies are all gone. Two days ago they were here, but now they're gone. The space that they once occupied is

totally blank, empty and filled with cold pricklies. I wish they'd come back - all those nice little responses that say someone

There is a saying that if you want a job done you should ask a busy person. Whoever thought that one up obviously wasn’t

busy enough to know what being busy means! How about asking a non busy person for a change. Or how about teaching busy

My Doctor (GP) gave me a gift today - a signed form to take to the Licencing office to exchange for the big blue "H", the

secret to those special parking spots near the doors and the only way one can park on some Toronto streets without being

Under length of permit requested, he checked off "permanent". Under disability, he checked off "neurological" and his

Actually,none of it is great at all and I would give almost anything not to be needing one of those big blue wheelchairs in my

car window,even if I had to walk a mile across the parking lot in a howling Canadian blizzard. This is but one more step on

the road to somewhere. The big blue H will make the road a little smoother, I guess.

I got thinking today about secrets and wondered how many secrets each of us carries around with us as extra baggage.

Certainly we don’t talk about them; otherwise they would not be secrets. I am willing to bet that every one of us has about 3

big secrets and a ton of little ones. Some secrets are eventually “tellable” but some are secrets forever. Family secrets are

often passed on to the next generation and no one ever tells. There are people won’t reveal a secret even under torture, while

others inadvertently spill all. An acquaintance was told by her doctor that she would not be free of symptoms until she

“talked about her secrets.” Her real problem was PD. Is it possible that by telling all our secrets we’ll be cured? Worth a try.

A song on the radio this morning took me back to a time in my early twenties when life seemed to stretch far ahead and look

so exciting. In my head I can picture myself on the dance floor, slow dancing with an unknown face. I remember what I was

wearing and the exhilarating feeling that life was going well for me at that moment. That song always renews the same

What if I had known? If I had been able to see into the future, would I have felt so secure and content? Would I have changed

anything in my life? These are impossible questions to answer. But I do know this: I am really glad that we cannot mentally

jump ahead to the unknown. That doesn’t just apply for me on a personal level either, but also to other more global areas of

life. I really believe that we are not meant to know. “The universe is unfolding as it should” (or as it will).

I am a curious person but I don’t want to know what will happen to me tomorrow and I don’t want to know what will happen

to the world tomorrow. Something will – but I don’t wanna know until it does. It’s sometimes hard not to get ahead of

yourself. The news media and our highly technological lifestyle don’t help. Speculation is staring at us all the time. But for

This started out to be an explanation (justification/excuse lol) for all the typing errors that I make but after reviewing my

work, I think I’d better not let the image of all teachers go down the tube just because I appear illiterate. I’ll address the

Typos: I have never been a crackerjack typist (keyboarder is the now word, I believe). I never typed more than 30 words a

minute (using both hands) at my peak, but it was good enough that I didn’t have to pay to get papers typed for school. I should

be typing with one hand now but I don’t seem to be able to unlearn this home key two- hand habit. My left hand still types

about 25 words a minute, but my right hand types about 2, which presents a number of problems, many of which you see here.

My left hand gets impatient with my right hand and tries to muscle in and do part of its job. When my hands are crossed over

the keyboard I am not praying, but attempting to make up for a total lack of dexterity in one hand . Voice is ok but the

“Ok Chosh”, I hear you say, “we’ll excuse your poor typing, but how do you explain the rest of the mistakes you let go

by----and you a teacher too!” I will have to respond that I can’t explain it other than to say I don’t care as much anymore,

especially here. It used to matter, but from what I see I think everyone here understands “parkie English” and doesn’t care too

much about grammar, spelling etc. Now that I know that my journal entries are not being marked, I only correct blatant errors

and make sure it’s readable. It’s become more important to perfect the content than the structure. It is likely a good thing that I

am not teaching anymore because I don’t think I’d catch many of these mistakes and I might catch a negative report from my

Have I become less intelligent? No, I don’t think so because I know I’m making errors (lol) and know where to reference

corrections. Have I become less in other people’s estimation because I make these errors? I don’t know (and am not really

bothered about it either!) Am I happy making mistakes? No, but I’m not going to waste valuable time making my work

Just remembered a joke. The first sign of going insane is growing hair on the hands………….

PS I am not fully cured. I corrected this entry, so nobody would think, “How scary that she might have taught my kid” roflmao

Last Thursday I went to Toronto Western Hospital to get the results of my sleep study. (Two full days and nights at the

clinic).This was a follow-up study to one done last year as part of a research project. Despite new medication, things had not

improved much over the year. During the course of discussing them with me, the doctor, a neuro-psychiatrist who is a sleep

disorder specialist, asked me to prioritize problems in my life using a pie graph. I surprised myself to find that I assigned

30% to sleep difficulties. When I thought about it, I realized that I never get a “good” sleep, always feel sleep deprived, and

worry about becoming addicted to sleep medication. I have always been a light sleeper who needed my eight hours to

function well, Now I live on much fewer and it seems as if I sleep in two hour chunks and never deeply. The results show

that I was correct about that and have a “typical” PD sleep pattern. The average person goes into refreshing REM sleep

within 90 minutes of so. For me, and likely other Parkies, it was 330 minutes and I didn’t stay there long. Before REM sleep

was a long period of being on the edge of wakefulness. During REM sleep some breathing irregularities were noted that will

be watched each year, as the doctor feels they will worsen with time (also PD related, he thinks).

It is difficult to really determine what effect a lack of sleep has on life but I am beginning to realize that it is a bigger issue

than I realized, not just for me, but for many others also. Not sleeping properly causes stress, as well as fatigue and that

impacts heavily on PD and its progression. Being sleepless has all kinds of implications and I am going to explore them a

little more. After out discussion this doctor told me that he was speaking with a group of neurologists and psychiatrists about

the effects of chronic medical conditions and the medications used to treat them on sleep. He asked if I would be

interviewed. That makes me very nervous but I think I am going to do it. I think it will be interesting and it may encourage our

doctors to ask more about sleep, taking it into consideration when prescribing new medications.

As for my concerns about addiction, he told me that if the body needs a drug, it is unlikely to become addicted to it. The

reality, he says, is that if I am to meet my goal of five hours of uninterrupted sleep, I may always need medication. He tripled

the dose and gave me some leeway to adjust the amount downward if needs be. I will try it for two weeks and, if it improves

I am learning about sleep and PD as I go aong and the more information I get, the better able I am to deal with it and make my

own choices. Although I took sleep medication, it was only with great reluctance, but knowing the it might keep that sinemet

in the “reserve” bank for a while longer has made me feel ok about taking it. That in itself will likely make it work better.

For the last few days it has seemed inappropriate and disrespectful to write about mundane trivial things.Everything has been

mundane and trivial. The world will move in a different direction because of this week. Nothing will ever be quite the same

again. Security will increase, trust will decrease. Our children, grandchildren and great grandchildren will learn about the

events of this week from their school curriculum.. How will all of this horror be viewed in retrospect; that is , if there is to

be a retrospect? Will our descendents appreciate the horror that we feel? What is the chapter yet to be written?

It is now 12:45 pm. We don't yet know half the story. This feels like a movie rather than real life - so scary. What will

happen next? Tuesday September 11 will be remembered as a terrible day in history.

Today's journal entry is very embarassing but it demonstrates something about yesterday's entry about sleep problems. This

morning I woke up at 3am, took some of that sleeping medication I mentionned yesterday and went down to the computer

while it was taking effect. Here is part of what I wrote. (any wonder that some of us worry so much about medication effects

on the brain) I can't even understand this even though I knew what I wanted to write:

(Written an 3am "whekek ukbder te ubfkuebde, This is me, drjgged on a sellping medidation called starnod. Iti is the oen I

takeiin themiddleof the ngiiiit if I wake j[ fr to long. This is the effect it has on mt avillrty vo communidarte in writing.

I am fighting the effedts of te bpoll rightnot so that I can write this. I knowits frull of errors bt I can’tc correct tnerm. V the

Here it is 2am, and here I am sitting at the computer. I can hardly hold my head up, I feel exhausted, but I can't sleep. Since

starting Sinemet I have this restless feeling that doesn't let me stop until I drop. I have no idea if it has anything to do with

Sinemet but I wonder, even though sleep problems predate that drug. During the day I feel as if I have to keep moving and at

night I sleep in two hour chunks with lengthy periods in between. Sleeping medication does not help enough.

At this hour the world looks different; more closed, gloomier,scarier. On rare occasions I don't mind, but mostly I'd rather be

This morning I sat in a store listening to two young ladies (about 17) have a conversation. They were clean, well dressed ,

and appeared to be like any other kids you see on the street, Their discussion was animated, loud and agitated. It went

Yeah, he said I shudn’t have beat the f---- slut up ‘cause, like, ya know, she wuz his ex now.

F--- , like he cud’ve, like… uh.. like, tol’ her you were his f----woman now and like, uh… ya wuln’t have had to ………

You get the drift. The rest of the conversation concerned the battle between the two girls, the boyfriend, how drunk they all

were, and how mean the cops were. (None of them were apparently charged, but two were taken to the station for a lecture).

I’ve heard all this stuff before in high school hallways, but this time I really listened to what was behind the talk. I was aware

of physical and verbal aggression, booze, police, ownership of people, language, attitudes, values....etc etc ad nauseum….not

I must be getting old. The generation gap has suddenly become apparent to me and I have regained the power to be shocked

by teenagers after all these years of teaching adolescents. Were we like this? Was my son like this? Were his friends? I think

not but perhaps I forget. Perhaps these girls were not as typical as I thought, but I suspect they might be.

I resisted the urge the tell them to “wash their mouth out with soap”. What is this generation coming to. lol

My last entry disappeared. I wonder where it is? I hope it is not floating around all by itself in outer space. On the other

hand, maybe that is a good place for it. Perhaps it will fall through a black hole in space into another universe. Alien beings

might find it and decode our language and decide to come visit us. They might then abduct a few of us to perform medical

experiments. What if they accidentally take a parkie and think ...................Geez, not only is my entry lost. I think my brain

I am always attracted to people who are just a little bit “offbeat “. By offbeat, I think I mean those who stray just a shade

away from the behaviour “norms”; those who like a unique element of excitement in their lives and who convey that to others

just by their presence. Being rather conventional myself, I guess this is the only way I can safely taste a little rebellion. If I

am honest, I would have to say that I am a wannabe offbeat who doesn’t have much nerve. By hanging around these people, I

experience some of the excitement but few of the consequences. The risk to me is minimal. When the going gets tough I can

usually retreat back to my version of safety. At times almost all of us would like to stretch the envelope and test the rules. I

think that most of us have some attraction to those who actually step out front and do it. That little bit of naughtiness is

appealing because it reflects what we would say or do if we could work up the courage.

This is also the group of people willing to try experimental medications, surgeries and treatments. Some part of their spirit

that gives them the ability to deal with just about anything and come out ahead. You have to admire them. Lately I have come

to realize that these qualities live in all of us to some small degree, but in most of us remain untapped until there is a trigger.

Parkinsons would appear to be a great trigger for some, as there are more of these qualities in our group than would seem

reasonable to expect statistically. That has its positives and negatives but at least life if never dull around a group of parkies.

Monday September 3, 2001 September traditionally marks more new beginnings for me than January. A new site here, a fresh

journal with calming picture, and a new school year starts tomorrow. It's the second time I have not returned for a new school

year and it's easier than last. I have found my footing and don't mind not returning teaching. My theme for my old journal was

"a work in progress" and I bring that theme with me because it I am more aware of that than I ever was before. It's how I deal

with changes that are continuously being thrust upon me. I sometimes wish I could take the easier route, smile,look happy and

keep my mouth shut but, darn it, I just can't. Never was a very good actress! People in my life get sick of Parkinsons and the

way they believe it dominates our lives. I get sick of it too. The only difference is that I can't escape it. I cannot dismiss it as

part of the process of aging, menopause or arthritis (although I won't escape all those either). PD is my constant companion

and I must be on guard to make sure that it doesn't sneak up faster than I am prepared for. If The best defence is a strong

offence then I am ready. PD sometimes tries to lull me into thinking it is retreating. Then a new assault lets me know that it

won't ever really surrender. These are my visualizations of pd and most of the time I don't think of them as negative thinking.

They are just my way of fighting. I look at it like the "100 years war" in England - a series of constant battles that you learn to

live with. You can put it to one side of your mind but you can't leave it behind. We need to discuss Parkinson's and its impact

Monday September 3, 2001 September traditionally marks more new beginnings for me than January. A new site here, a fresh journal with calming picture, and a new school year starts tomorrow. It's the second time I have not returned for a new school year and it's easier than last. I have found my footing and don't mind not returning teaching. My theme for my old journal was "a work in progress" and I bring that theme with me because it I am more aware of that than I ever was before. It's how I deal with changes that are continuously being thrust upon me. I sometimes wish I could take the easier route, smile,look happy and keep my mouth shut but, darn it, I just can't. Never was a very good actress! People in my life get sick of Parkinsons and the way they believe it dominates our lives. I get sick of it too. The only difference is that I can't escape it. I cannot dismiss it as part of the process of aging, menopause or arthritis (although I won't escape all those either). PD is my constant companion and I must be on guard to make sure that it doesn't sneak up faster than I am prepared for. If The best defence is a strong offence then I am ready. PD sometimes tries to lull me into thinking it is retreating. Then a new assault lets me know that it won't ever really surrender. These are my visualizations of pd and most of the time I don't think of them as negative thinking. They are just my way of fighting. I look at it like the "100 years war" in England - a series of constant battles that you learn to live with. You can put it to one side of your mind but you can't leave it behind. We need to discuss Parkinson's and its impact on our lives. This is my place to do that.