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My thoughts.......

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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.

Idj

The only person that gives me a hard time about PD is myself the only person to rush me , do too much , get upset , get in the way ect ect is yes ME . Now I am at the stage where I have this idiot under control  ( myself ) and we seem to all be the same we beat ourselves up nobody else does we are our own biggest enemy  in short DENIAL  we deny ourselves thinking we can do anything but when you get your head around it and accept it it's actually easy to live with . Just learning ourselves is the trick , happy boy  Ian but it's took me a long time to settle down to it all . So good luck everyone with yourselves enjoy  yourselves   

ian 

 

DivineR

Hi Ian, 

Great post. I still haven't quite got this idiot under control. Try pushing too hard and wonder why I can't function the next day. But, although I'll control the idiot soon, I will still try new things and put myself out there. Enjoy yourselves is a great thought for the day. Thx

Supa

Ian, more wise words!

I am my own worst enemy, haven't quite reconciled myself to what I am now and my limitations. Constantly try to do too much and pay the price over the next few days.

But keep reminding us, please, and we too may get there!

S

frances

I  totally agree with all the above. Truly  there are worse things. i tend to be part of the "keep going" brigade. And exercise when you can, and as much as possible. I even tend to walk round my house swinging my arms, and getting on and off one of the teeny chairs bought for grandchildren! No holding on!

Love to all.

Frances

daffy

Hi,

I definitely agree wholeheartedly with all of the above. They all ring true, nice to know others feel the same.

Daffy

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