Back to top

My thoughts.......

6 posts / 0 new
Last post
Ali p
My thoughts.......

As Parkinson's awareness week approaches it draws me into thinking of my own experience...which I rarely do.  I've seen lots of videos shown on fb of people with Parkinson's giving a view to the 'un familiar with Parkinson's' general public.  I have found some shocking, some scary and some very sad.  I was diagnosed in June 2011, I initially refused any meds and ended up almost crawling to my neuro appt after 18 months (not recommended).  When I did enter the world of sinemet plus and azilect, I made sure I was aware of what I was putting into my body.  I researched and listened to other people's advice and experience.  After almost five years, luckily, I feel in control.  I know that I could not function without my sinemet plus.....it tells me so if I dare to be late.  But life so far is ok, to any newly DX, please don't be too scared....there is life after Parkinson's.

daffy

Hi Ali p

Great post. Couldn't agree more. I was diagnosed a year ago but had long suspected my "benign tremor" of the previous two years (diagnosed by a stand in doctor), along with various other symptoms was more like PD. Eventually my husband insisted I see a doctor again about my "funny" left hand. My regular great doctor diagnosed PD and put me on sinemet straight away, saying there was no point waiting. Neurologist later confirmed this. This lovely knowledgeable doctor has now retired and there is no other doctor in the surgery with a knowledge of PD unfortunately.

I had quite a rough time accepting it, especially as Mohammed Ali died a short while later and every where I looked there were pictures of him at his worst and far too many gloom stories. 

What newly diagnosed people need is to hear is that it isn't the end. Granted ,life  is not the same as before, PD is not great but it is most definitely  not the end. And contrary to a lot of popular opinion we are not all in wheelchairs yet. A lot of us are still walking the dog etc

Ali p

Thank you for your nice comments Daffy.  I agree, it's tough to accept, and I'm also aware that we have a battle ahead...but intend giving it my all to win.  Again, thank you x

DivineR

Liking the positive thread. Some days you don't feel like it. So if you get up every day and achieve at least one thing however small it can make a difference to your day. Of course some days are better than others. 

For me it was a mind shift. Life is different not over! 

TeeHee

Despite having a moaning festival at times even though now had to give up work, I can see the positives ..

1. Get to have a lie in every morning.

2. Shopping in the week when not as busy.

3.  Can now tell people I am retired rather than unemployed, as this stops people suggesting new careers like trapeze artist, children's entertainer, secretary and parcel delivery services?

4. Get to sit out in the garden when the sun shines.

5. Book days out in the week, much cheaper.

6. Over the negative scrap heap thoughts, I am now a lady of leisure.

Yep!  it's good to be positive but ok to relapse and have a pity party once in a while.

Ali p , you look so happy, must be the medicine in that glass.

daffy

HI Everyone,

PD diagnosis is certainly a "mind shift". I didn't want be here but now I am I feel I've no option but to make the best of it.

I found the most difficult bit recognising my "new" limitations. Can't multi task any more, no sense of smell - mind you, on the plus side I can genuinely say I wasn't aware a grandchild's nappy needed changing!

I fumble with change, keys, bottle tops and putting small items on the washing line, tired, achy etc.someetimes. But I'm still trying to learn to accept it and not fight too hard if I'm having a bad day

BUT I'm still here,there's a lot I can still do and new things to try. In fact since diagnosis I have become bolder at trying out new things. I mean - why not while I can.

It's great being in  touch with others in the same boat, reassuring if you know what I mean.