[pkell]

As many of you know, some of us are colaborating on a book about the internet connection that we are all participating in here at NT. One of the sections in the book is TEN THINGS I HATE ABOUT PARKINSON'S. We would like to know what ten things each of you hates most. The more who contribute the closer we will get to the real ten things.

Thanks in advance for your contribution. Lurkers too!!

[paula_w]

1. falling
2. social isolation, people staring
3. interpreted as being old and/ or drunk - when age came up, and my grandson discovered i was the same age as his other grandmother, he got a look of surprise on his face. he asked again, puzzled. of course for age 6 i thought that was pretty good thinking...lol
4. being off with peripheral weakness in lower legs and dystonia
5. sinemet cognitive side effects impulse dyscontrol, rambling communication, distraction and lack of focus and clarity,
6. fatigue, lack of energy
7. apathy, detachment, dullness of emotion
8. laying awake at night
9. no appetite, weight loss, problems meeting nutritional requirments or physical penalties for eating too much too early
10. its' toll on the family and life in general....it creates a "chain of pain", destroys families, turns marriage into a job for the carepartner and can lower your income and lifestyle.

thanks, pam

another suggestions if someone wants to start it, was done many years ago and got some chuckles; it's amusing if you have pd or are involved. i haven't found it yet in old forum posts and if anyone does find it please send. i'll leave it up to someone who is from the book forum working on the section it might be relevant to -to make the decision and start the thread. as always don't feel obligated and woudn't put a number to this one.lol

edited to add: what a perfect example of my poor focus and memory, carelessness, you name it...as usual... it's what the h*** am i talkng about , are some key words missing?

Here it is:

What excuses did you use for symptoms when you were hiding your PD?

Maybe Pres. Clinton could use a thread like this, altho if his tremor is bilateral, that would make my suspicons of pd not as strong. If he does have it, he needs a bit of help here. And I say this with understanding from the accumulation of many frequent fibber miles for many years. I know Mike Fox knows a thing or two about having to physically hide.'' He had lyme disease,- an undeniably useful and true excuse. Of course so is a bad shoulder, but at some point you have to explain the foot drag. We could add this one to the section about career loss and when to quit.

ok back to pam's request , keeping in mind what researchers need to solve. we could look for patterns of whether motor or cognitive prevail as hated the most and fixing which one would help the other more?

p

[dbiker2]

1. Falling
2. Falling
3. Falling
4. Falling
5. Falling
6. Falling
7. Falling
8. Falling
9. Falling
10. Falling

[Sasha]

The first thing I hate about Parkinson's was the feeling I had to lie about having it! Fibs I've told to explain away symptoms:

1. Pinched nerve, according my doc. Makes me limp.

2. Frozen shoulder from 40 years of carrying a purse on left side - my arm no longer swings!

3. I just can't tolerate caffeine any more - really gives me the shakes.

4. Turned my ankle playing tennis...

5. Thanks, but I think I'll skip the soup and just have the sandwich!

6. May I have a straw with that coke?

7. My back's bothering me, need to park near the door so I don't have to walk far.

8. I stayed up too late last night and I can't seem to type anything accurately when I don't get enough sleep!

9. The cane? Oh, ever since I broke my foot a while back I've needed it occasionally - darn foot still hurts.

10. No, thank you, but I'll take my own groceries out - I have this pinched nerve in my back and it helps to lean on the cart...

[Sasha]

Sorry, I seem to have derailed the intent of this topic with my frivolity (I feel Parkinson's owes me any levity possible, I guess) Anyway, here are 10 things I truly hate about Parkinson's:

1. Lack of support and understanding from the public and friends.

2. A feeling of shame for being so "damaged" - like I have to hide the disease

3. Lack of trust in my body

4. Loss of my job and all that went with that

5. Uncertainty about the future; lost feeling that I can control my destiny, improve my condition (well, maybe some shred left...)

6. Exhaustion: lack of stamina, insomnia

7. Anxiety

8. Dependency on a MDS whom I do not really trust or like

9. Terrible loneliness

10.Never really comfortable in public but go stir-crazy at home, miss activities that were such a part of my life!