[Helen]

Hello, Have moved around frequently and finally now in Currimundi,Sunshine Coast, Queensland Australia. Because of serious falls in my home I’m now in a facility where I’m looked after in every way possible. This is a particularly lovely part of Queensland with the Pacific Ocean about 1 kilometre away. All the outings to Restaurants, Movie Theatres, Shopping etc ceased in March because of COVT. We try to stay upbeat and planning for Christmas in isolation already underway. Large facility with lovely garden areas which will have separate themes in lights. As visitors …2 at a time only must leave by 6.00 pm it’s doubtful they will view but hopefully hours can increase to 7/8 over the Festive season.
I’m a 15 year PD veteran and have come to terms with realising there’s no cure but willing to try anything to ease symptoms. Dyskenesia is the Sword of Damocles on my back with relief only when Levedopa decreased but then so is mobility. Enough of me. Take care everyone.

[Helen]

I’ve opened the Forum hoping to read somewhere, somehow, somebody has an answer.

Its after 3.00am which is my usual time to wake and forces me out.  Pain, numbness , bladder problems dictates my life of misery .

2005 was a long time ago and never forgotten as that’s when the Sword of Damacles appeared over my head.

Madopar introduced slowly.  Now hit and miss.  I’ve just taken half a 150 mg which will give me enough ON time once kicked in, which could take half an hour or 10 mins, to get to the bathroom, make bed, and feel half human.

i have numbness all over, little dexterity to type and delete more times than I need to get my message out.   My desk is very close to the bed making ease of exiting easier.  I now wait.

Because I now have severe Dyskenesia from the medication,  I’m loathe to take usual daily  dose so have to settle for this lack of mobility.
My neurologist told me to play around with dose to help me find the optimum but I cant.

Im in a Nursing home at 72.  Dumped by family.  Problem solved.

i hate my life, I’m hurting with invisible pain and only Panacea seems to be out of sight to all, so ‘she’s ok mate’.

Negativity now rules I’m sorry to report especially at this ‘witching hour’.  I can have moments of positivity later in the day but rare now.

I’m managing to remain independent and I’d love to press ‘help’ button, but  because I don’t want strangers toileting me, showering me, dressing me, I don’t.   Why am I so stubborn.  There’s a Fall waiting to escape.  I know there’s hope out there but not in my lifetime.

Forgive me .  2020 here but definitely no New Year Resolutions.

[Helen]

Yes. After spending $1,960 on an experimental injection of Bydureon/Byetta/Exenatide I have now found an improvement in my general overall symptoms.

Improvement:

More ON time.
Little or no Dystonia and Dyskenesia
Depression still with me but I can overcome it by playing music I love.
Little or none of light head and dizziness.
More interest in my home duties.

Problems are:

Heavy sweating when using a small amount of energy…..hard to cope with that.
Body still frail and prone to falls of which I have had many.
Stick and Frame always close at hand.
My toes don’t have normal sensations and feel numb. After a while I have to get my shoes off. The toes are twisting inwards.
Had a wonderful 2 hours from 3.00am to 5.00 am where I felt completely Normal. Then I began to crumple and start on the days ration of Madopar. In those 2 hours I managed to strip the Queen Size Bed, remake it with fresh linen, wash and dry the linen all by the Dawn. Amazing. I said to myself I’m cured. Of course it was fleeting. I am optimistic that I’m on my way to a better retirement.