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Wednesday, July 25, 2012

Do I burn the candle at both ends or try and stay healthy?

It's hard to know whether to party, party, party or stay healthy and try and maintain good health and supposedly a better quality of life. By this I mean stop drinking, eat grits and grains, go to bed early etc etc. The Parkinson's seems to advance no matter what one does to slow down the degeneration.

Some days I am full of that wonderful positivity and I am sure that I will be able to maintain my health for a long time but other days that cloud of grief for my lost future hangs ominously over my head.

Unfortunately today is one of those days.

The body is stiff and sore from the moment you wake up and you just want somebody to make it all go away or just care for you. Instead daughter must go to school, dog fed, start working or if it is too much just go back to bed and try and pretend it is all not happening.

So back to my original statement of whether to party or not.

If I mention my moods to my neurologist he immediately wants to send me to a shrink to go on anti-depressants but I am already on a shitload of drugs and couldn't really face any more - the L-Dopa, dopamine agonists, vitamins and a couple of others for a couple of other health issues. Some days you just want to throw the drug basket into the bin.

Anyway I have yoga in an hour so my mood will go from black to a more calming colour and I will be OK.

I have learnt to keep this all in (but today I am sharing it with the world!!). If any mention is made to my neuro he immediately wants to send me to a shrink and be put on anti-depressants. More drugs NO THANKS. Yes we all know that Parkinson's physically can cause depression but usually it is just that one feels down because you have a degenerative neurological condition and are aching all over. (In all honesty, who doesn't in their late fifties!!)

So I play the Pollyanna Glad Game and say "Gee aren't I lucky to have a slowly degenerating strain of Parkinson's".




Friday, July 6, 2012

Working and Parkinson's

We all want to remain as participating members of the community but on the other hand do you work or retire young thus enabling you to do these things that you always wanted to do before it's too late.

If you can arrange it, part-time work is the answer and even better, part-time working from home. When I was diagnosed with Parkinson's I took a medical retirement from my governmet job which fortunately gave me enough to pay off my mortgage and set up  asmall consultancy where I could work part time and at my own pace. It was probably the most sensible thing I have done in my whole life!!!

If i have a lot of energy i can do more work and if my energy wanes I can do less.

I can go to yoga, the gym and have rest breaks which are vitally important if you want to be able to sustain your working life for a bit longer.

I find that when that dreadful sudden hit of tiredness descends you simply must lie down and rest because working or even thinking is impossible.

This brings me to the main message of this post and that is planning. When I was initially diagnosed I started my 5 year plans - things like retirement, sell the house etc. When my husband died my plans were derailed but I have taken the idea back on.

So planning is my number one message (after exercise).

I did, however, want to explore a little the issues around working and Parkinson's. It has traditionally been thought of as an old people's disease so working was never an issue. Now with many more people being diagnosed with Young Onset Parkinsons's , dealing with it in a physical and burearucratic way has become vey real. Fortunately when I was working full time I was working in a very supportive environment and again true to my 'milking it for all it's worth' philosophy used it if I needed to move to a centre close to home and not travel as far. I'm sure it's different for many others who may feel the need to hide their Parkinson's from work mates and bosses in case they will be discriminated against or told to leave work.

In this day and age of OH&S requirements surely there is a type of light duties for an employee with Parkinson's.