Newly diagnosed


#1

hello all

I have recently been diagnosed with parkinsons and am on 3 tablets a day of sinemet.  I am a little less stiff but still have a left hand tremor and difficulty swallowing.  I am determined to try and lead as normal life as possible and would like some advice on exercise.  I would like to try and strengthen my left hand in order to use the computer better as I am a writer by trade.  I have looked up some youtube advice on hand exercises but would like to hear from others on what they think works.

many thanks

miss zuka


#2

Hi miss zuka

Sorry to hear of your diagnosis. But as you'll probably already realise from your reading on this forum, there is much to hope for. Being determined to lead as normal a life seems a great start. Most cases progress slowly so you can get used to how you are. And there are plenty of workarounds which help us cope with restrictions better.

I too spend most of my day typing, and one-handed. I never was a touch typist so it might be easier for me to accept my slowness and inaccuracies. At first I tried to continue using both hands, but it got as silly as a Morecambe and Wise sketch - I hit all the right keys, just not necessarily in the right order. A combination of switching to one hand (fortunately my dominant one anyway) and the drugs means my tryping is mosely KO. But i agree with you about slowness.

Anyway, none of that answers your question. Probably coz I can't, never having done such exercises. Do you have a PD nurse? they could probably help, and maybe get a referral to an occupational (um I think) therapist - I do believe there are ones who specialise in neuro conditions. i certainly know exercise in general helps us generally (dammit, prefer slobbing, myself), but I'm not sure how much it can help restore fine motor function. (Otherwise, you'd think that the exercise of trying to type two-handed would be the best sort anyway - and all I get when I try is much slower, more frustrated and greater inaccuracy.

There's always dictation programs. some people swear by them, others just swear.

Let me know how you get on. I'd be interested if you found any alleviation.

Very best

Semele


#3

Hello, miss zuka --

Welcome to the forum!  My problem with my hands is arthritis and stiffness of the joints.  I do several things to try to counteract this condition.  Simple stretching is effective for me:  clench your fists, then open your hands, stretching the fingers as far as possible.  Also, I put my fingertips together and press the fingers of one hand backward, then the fingers of the other hand.  If there is no flexibility, I don't put the fingertips together; instead, I use the opposite hand to flex every joint of the opposing hand. 

Even better exercise for my hands is playing the piano.  If you play a musical instrument such as the piano, the violin or other stringed instrument, practise will provide exercise.

Frankly, though, your difficulty swallowing sounds more serious.  You may need to consult your PD nurse (if you have one) about adjusting meds.

Best wishes!  For a newly diagnosed patient, you seem calm and objective about your case.  A very good start, a positive outlook . . .

J


#4

Enquire about Conductive Education in your area, this will help you cope with the problems you are experiencing.


#5

Thank you for your responses.  I haven't seen a Parkinson nurse yet but will certainly mention the points you are making.  It is very comforting to know of the help and advice on this forum and the exercise advice is just what I need.  Unfortunately I don't play a musical instrument, (I always fancied learning the cello but I think that is a non starter) but I have been told that Nintendo Wii sports games are good.  I don't have Wii - do people think it a good buy?

I have just treated myself to a tempur mattress  (second hand) that I am getting today as I have been told it will help with movement in bed at night. Will let people know whether it was worth it.  It seems a good buy - the seller tells me it is only 6 months old and cost a fortune - over £2000 - do people really spend that sort of money on mattresses? I'm paying over £500 and have never before spent that sort of money on sleeping arrangements.

Parkinsons is making me re-evaluate the little things we take for granted - a good nights sleep, quickly being able to respond, getting out of a chair easily, not being exhausted after a long days work.  I'm trying to adjust to all this and I'm sure I will have a better handle on it after seeing a specialist nurse. I understand we have a very good one in our area.  I live in Kent.

miss zuka


#6

miss zuka, your last paragraph speaks for all of us, I think.  Simple actions and simple gifts, such as the ability to sleep or the energy to get through a day, become precious to pwp.  With the right combination of medications, we can regain some of those lost or impaired abilities, at least for a while.  I've been fortunate in that my 17-year-old case of PD still has not altered my daily activities much at all.  But when getting up out of a chair is unexpectedly hard, or when my fingers perform unevenly on the keyboard, I am reminded that I do have this disease and must deal with it daily.

Mattresses are hideously expensive these days.  I face that problem, too, for my current mattress is contributing to backaches.  The mattress my husband and I bought eight years ago for the guest bedroom is great, I've discovered, so I'm eventually going to buy one like it in king size -- if the company still makes it.

Best wishes,