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The year 2021 is almost done

Categories: Family General Lifestyle New Parkinsons Tags:

While I’d love to say “time flies when you are having fun.”, that’s not the reason that I haven’t done a blog post since April 2020.   I’ve written many  articles in my head, they just don’t get down on paper.  There are  a variety of reasons why including Parkinsons.  In general, I’d say my Parkinson’s has been stable for the past 18 months but I do have some neurological symptoms that appeared to be getting worse but have recently improved. Sometimes the fear of getting worse does hold me back. 

Whenever I start a task, I think, am I in an A,B, or C place.  If I’m very comfortable, little stiffness, thinking straight, I tackle harder projects like reading an instruction manual, moving files on the computer, anything creative and things that require mobility.  I don’t sleep more than 5-6 hours so between that and Parkinson’s medicine cycles, my “A” time has to be planned carefully.   If I’m not quite at an “A” level , I try to do tasks that are standardized like paying bills, or simple research.  When I’m at a “C” time, I usually pedal the stationary bike, read a book or play computer games until I feel better.  Even as I’m writing this I was an “A” moving towards “B” ; my right ring finger is feeling tight and triggering, so I have to correct lots of typos. One word of advice is to always have the keyboard at your optimum height (I believe this is 25-27 inches from the floor.)    I have considered the possibility of hiring a typist so that I can get all the documentation and photography that I want to do, done.  I think I talk faster than I now type.

We would have never expected a pandemic in our time but while we want to comply, “sheltering in place” is exactly what a Person with Parkinson’s cannot do.  So I continue to take live exercise classes,  physical therapy, water exercise and outdoor bicycling as much as I can but I will use Zoom when necessary.

So my personal goal is to get my blog caught up.  Parkinson’s is such a strange disease and I want to tell whomever is interested about my unique case.  My husband and I never dreamed that I would be as “good” as I am now, even 10 years ago.   I keep thinking of more aspects of Parkinsons that I want to write about but I will them to another day and get to another “A” task before my 6:30pm water aerobics class.   I’d like to move the blog entries on www.gsfriedman.com to www.pdsupportgroup.com so watch both sites for more.

My goal is to AXE Parkinson’s (Advocate, Exercise, Education).

End of Year Summary

Categories: Family New Parkinsons Tags:

It’s been an interesting year.  On one hand I say that my life is in a state of equilibrium at the moment but I continue to be frustrated with my body and it’s aches and pains.  I guess in one respect things are good – my friends have stiffness, aches and pain and at least I have an excuse for it.  But I’m learning that Parkinson’s is unlike almost any other “normal” illness.

For Parkinson’s – we deal with multiple symptoms at the same time and these can be neurological, physical and psychological (but I must add for one person’s sake – it is in no way referred to as a mental illness and it can be inslulting and degrading when it’s hard enough to go out in public every day).  It is a slowing of the entire body including thinking, logic and vision.  Unlike almost every other calamity, except perhaps epilepsy, that  will always have to take medicine and more importantly the dosages CANNOT be missed.  The dosages have about a three hour half-life and need to be replenished.  And  while   people recover from bouts of cancer, heart disease, bad knees, etc.,  there is no recovery from Parkinson’s, only working at it 24/7 to live as well as we can.  (I don’t know how the PT’s  that work with Parkinson’s patients knowing that they can’t make them better, just stronger to deal with the pains, etc.

So, between good doctors, neuro-physical therapist, trainers, etc. I’m getting around pretty well.  I still start twisting internally when I stand at kitchen height counter, so I can only do a limited amount of cooking but when the meds are working I am flexible and pain free.     I do water weights up to six days a week and when I feel really good or the weather prevents swimming, I’ll do an inside class.  I also box twice a week and do a drumming and balance class (2 hours total).  But  I’ve been feeling well enough that I’ve taken on responsibility for Hadassah and for some training on computers.  Sometimes it seems overwhelming but I enjoy it.      But there are times that I get overly nervous and can’t accomplish what I plan to accomplish  and as a result I try to avoid time based  commitments.

But I’m never really totally pain free, usually either  my back hurts a bit or my shoulder, etc.  I’ve also been getting “buzzing” sensations in various spots of my right side.    This may be due to the C Spine again but it’s transient and intermittent not like 15 years ago when it was painless and constant.

So I’m going into next year, relatively healthy but cautious .  As much as I want to play pickelball, I’m avoiding it, I try to be careful not to Fall.  On the other hand, I’ve been in touch with some old NMB and RPI friends and I look forward to visiting them.  I hope to continue doing advocacy work on Parkinson’s and hospitalization and advising people who are newly diagnosed.  But alas I know that at some point this phase will pass.