Hi I was dx 2 years ago after 6 years of misdiagnosed lupus,rhematoid athritis and others..
I am terrified of the future because i,ve always been an active altruistic person. Now I have to ask other people for help,which doesnt come naturally to me. I welcome any advice and support from other pd sufferers. I am 52, married with 6 children ages 36 to 8yrs, and7 grandchildren.
6 children! 7 grandchildren!! well there's not much chance of you being left to cope on your own. Perhaps its time for you to be on the receiving end of altruism - you have earned it.
You don't know the future anymore than the person who has just won the lottery and is about to walk in front of a bus. To quote Doris Day 'the futures not ours to see'.
I've found it gets less scary the more you experience it. Especially once your meds are settled. Dont dwell in the future -- live in the present.
You are lucky to have so much family. Enjoy them.
thankyou....i am an optimist and a realist most of the time...just wobble occasionally
a rare combination, but imho the best
Hello and welcome Neenag, I agree with Turnip wholeheartedly. A positive attitude can make a huge difference to anybody with a chronic illness, of course we will all have some days when we are peed off but so do healthy people. I see no point in worrying about the future as what will be will be and we cannot change that. So live for today and enjoy your family and lovely grandchildren, you are so lucky to have them all as there are many people alone in this world. Take care
thankyou ... it makes all the difference talking to people in this situation. this is the first time ive admitted to myself that i need emotional support
Hi and welcome
Have you ever been able to help someone out and for some time after felt really pleased to have been able to be of use? That little warm glow of a job usefully done is the gift we can give people when we ask for help, accept it gracefully and thank them quietly.
Not that I find it easy.......
Hi and welcome,
How right sallymac and the others are, you are very blessed to have such a lovely family and I am sure you find it very difficult to accept help. When a nun and priest visited me when I spent long months in bed due to my back condition they said the same I have always been happy to help others and they said I must also accept help and give the same pleasure to others. I am still very independent but do ask for help more since then. None of us know how life will turn out so enjoy today as I am sure you will have down days just like the rest of us.There is only my husband our son and myself, we were never lucky enough to have more children but we are very close, but I do worry about our son who is still single which is so common today.
Hi neenag i know exactly were your coming from. I was dx nearly three years ago and just realised im still in denial. I try and stay positive but of course we worry about the future its to be expected. I find it really hard asking for help especially from my grown up children (as a mum your used to being the carrer not the other way round!)
It wasn't until last week that i realised im thought of the same mum as ive always been:- my son asked if he could hold his engagment party at home (even tho he has a home of his own), ive always jumped at the chance of organising a good old knees up! With plenty of help the party was a great success and i felt like i had really acieved something (only 18 months ago i was so self contious i couldnt wàlk into a room full of people let alone organize a party!)
I find it easier to explain why im slow, stiff and jumpy and find things difficult, but out of over 40 guests no one treat me any different. All im really trying to say is get on with life dont dwell on what may happen in the future because no one knows! It did take a week to get over it but i dont see pd as that devil on my shoulder any more just an annoying inconveniance thats been treated!
Please excuse the spelling mistakes thats the G&T!
When I made my somewhat melodramatic announcement to my sons just after dx when the darkest scenarios loomed large, one of nicest things my sons said to me was "But you'll still be the same person" with the implication that I was a worthwhile person for them just as I was and whether I could do stuff or not.
It won't perhaps be obvious why this meant a lot to me. As they say nowadays there are "issues" from my childhood. The fact is that every human being makes a unique contribution to this world even if it is
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.
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
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
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
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.
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
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!!!!!!