Continued from above (I did not press the post button - I just copied it so I could check the previous posts and come back to my post !!!)


........even if it is by allowing others to feel of value by helping us as Sallymac said above.

Thankyou to all who have replied. sometimes we dont see what is in front our eyes until it is pointed out,so,I am lucky and will think of this when having a bad day.

neenag

Hi Neenah.
I'm in a similar position to you.im scared of the future and um getting down quite a bit just lately.i hide my pain alot from others but sometimes when it does get bad I have a little moan.family don't realise how bad I am and some think I'm putting it on because some days I can move better than others.i get no support from anyone and close family tell me to stop moaning.even though I also got bells palesy as well which is really crushing my head at the moment.as you can see I can't sleep either.ive got 13 year old twins one with aspergers and the other with cerebral palesy in a wheelchair with diabetes.plus we foster so it gets busy and I've not got much energy these days.but I bought a static at Skegness and trying to do today what I may not be able to do in the future.everyone with pd is scared of the future we all have to live for today.sorry I've gone on a bit.hope this helps a bit

Hi neenag
Didn't get your name wrong it's just the stupid spell checker on the iPad.lol

WOW!!! TWINS 99
how dare I complain...what a busy schedule u must have. I dont know how u manage through the fatigue. still u foster aswell. When do u get time for yourself.I know what u mean about no one realising how ill u are ...because they dont see how we feel and we try to carry on as normal..
Have to go to work now so will contact u tonight. keep in touch pls
neenag

Hi neenag I was up this morning as usual at 6.15 so I'd had 3 hours sleep.muscle cramps slowing me down as usual.feel drunk and lightheaded.im forgetting little things now.but I help get the Kidd ready for school.then start a fee jobs.thats when the shakes come on once I've stopped to have a rest.
I do go shopping and I park near to the trolleys so I can get one and walk into tescos with one?it helps be balance and more in control when I freeze.i take my time and go to a full checkout do that I don't feel like I'm holding anyone up.
Last nov I went to docs with a black toe nail and the doc noticed I was shaking.he made me an appointment with the neurologist. Meanwhile I looked on the Internet for symptoms and I'd got most.if I can help with any questions just ask you never know.twins99

Hello neenag,

I have just read through the replies and I was surprised at their candour. I was told at the outset that each persons Perkinson's is unique and that has been my experience. A pragmatic acceptance and a positive attitude are the bare essentials of a PWP's ability to go forward.
I liked the fact that Vivian greatest concern was that her son was not married and her following wry comment. Turnip and Glenchass's sage replies. May God bless Twins99. I am the eldest of nine children and I am sure that your six are able to cope with whatever comes along. They may be scared but they can and will support each other. Eilleen Patricia ( I love that name) talked about being the same person and I take a some what opposite view without disrespecting hers. My contention is that PD is a progressive neurological condition. It has certainly wrought changes in me. I am five years diagnosed and still fairly active despite 4 hours a night sleep, stiffness and rigidity and the constant dull ache of pain. I am now selfish about my time and do the things I want to do while I still can do them. When I get confronted about this I play the PD card and tell my family that although the visage is the same the contents are different. My wife has a cup which says " I can only please one person today and I choose me". To me that may not be p c but this is my life and I only get one go. I still care for others and will continue to do so, I am very active for my fellow PWP's as a fund raiser. It is just a case of living for the moment and let tomorrow take care of itself! I wish you all the best and recommend you join a PUK branch because I have found that most benefical along with the comradeship of this Forum.

hi bogman
thankyou sooooooo much.. I really thought I was the only one who wasnt coping well..so..I did listen to the comments and they were helpful in putting things in perspective. Just the kindness of people taking time to reply was good as I dont really talk about it to those who dont understsnd. I would love to hear from pwp who want to tear this 'alien being' from their body. Most days are good enough but some days I want to scream and grieve at the loss of my normal life.
When I hear healthy people complain of being tired I want to say 'try being me...tiredness is the norm' then I stop feeling sorry for myself and get on with life 'til the next blip.
Thank you I enjoyed your reply
Neenag

Hi neenag don't have much time to myself.only at night after nine o clock.not doing to good the constanted headache and dizzynessf are getting worse at least j see a doctor next week

I HATE PARKINSONS!!!!!!