My name is Marg and I live in Adelaide, Australia, I am 63 and was diagnosed in 2012. I don't usually write on these things as I find it a very tedious way to hold a conversation, But I heard something today that made my blood boil. That severe muscle contractor that's a cramp gone mad, is called, by the specialists " stiffness " How dare they use a word for it that is so dismissive and innocuous.
And while I'm at it, many of the non motor problems are not given the attention they desperately need, Do you Guys have any idea what it like to have no interest in any thing at all, that's what happens when dopamine is not getting through. Our mental state should be your first concern. and doing something about the pain there is always pain, never stops. " Movement Specialists " That's the least of my problems,
And guess what, I am a public patient, on a centre link new start allowance, They tell me I'm not disabled enough to get a disability pension, My Neurologist, refuses to have anything to do with centre link, no help there, The people at centre link have no respect for the medical profession.
Before 2012 I was working full time, Now there is no way anyone will employ me and I still have 3 years till I can get the age pension.
But there is a positive side to all this, I keep busy, I volunteer 3 days a week at an opp shop, I love It, I get along well with staff and customers, My dexterity is still very good, I make and repair Jewellery for the shop, And I'm developing my own skills in this area and starting a small hobby business, It's slowly coming together.
I still ride my bike to and from work 3 days a week, can't walk for very long, and I'm still active and mostly positive.
I've spent most of my working like as a disability carer, and have a lot of knowledge on the human body and how it works, even my GP trusts that , so when I want to try something a bit different, she's happy to send a referral letter to the appropriate specialist.
To cure the apathy and depression I have a testosterone implant put in once every 6 months, It works, but I had to research and arrange it myself. and I've got my life back.
BTW, I'm pretty sure that the hot flashes ( not flushes ) and profuse sweating, are caused by gas wind and constipation and the pain in my lower back and hips are referred pain from the same cause, I proved it to myself recently when I had a colonoscopy and was almost pain free for 2 days after the the procedure, empty bowel, no pain.
I have 2 questions to ask.
1.Of the left handed people with Parkinson's, do you have trouble with writing? I don't and I think it's because I'm left handed. If I'm right I'll explain in another post.
2. A bit of levity. What is the funniest and or strangest symptom you've had?