Trying to be positive

[ann harper]

Hi I was diagnosed with PD 2 years ago now at the age of 56 -I feel my whole family except for my daughter are in denial - she has been my rock but, with 2 young children the light of my life, to look after I feel it unfair to burden her too much. My husband of 35 years and a very fit and healthy chap finds it very difficult. I know I look very well but my mobility is the main thing affected - It can get very frustrating when all people say is goodness you do look well!! I continue to do a part time job as a medical secretary which is my saviour!! Not being able to be as active as I was is the hardest part.

[Mary]

Hi Anne
I have had P.D. since 1999 when I was 55. Pace of life then was 100mph 10 years later still able to do everything but much more slowly- you do get used to it and adjust to it.Sorry your family cannot accept condition but keep exercising and moving as much as possible and isn't it better to be told how well you look rather than how ill you seem. Stay positive it really helps
Mary

[Diane]

Hi, Anne.

I am the wife of a parkinson's disease sufferer. I think you are right that we remain in denial for such a long time. It isn't that we aren't with you 100%; it is just that the meds work so well and the changes are so gradual that we can trick ourselves into thinking it is not so bad!! For you, the losses are relentless but we get a little reprieve when we see you doing so well and remaining positive. Can you tell us what your family does (or fails to do) that is hurtful to you? We could all be better partners for our loved ones if we understand your feelings.

I have found this forum to be truly a blessing. We are all dealing with PD in one way or another, and everyone is so willing to help and share ways of coping with any problem. I hope you find the same on here.

Diane

[suzie Q]

Hi Anne

I have had p.d 6 years .It was hard for my family as well to accept ,especially my middle daughter who was overseas on a working holiday for 3 years .i was fine when she went but when she came home i had been diagnosed with p.d.My other 2 daughters were in denial as well.It has taken time but they are all really supportive now and there for me when i need them.

i have been married 35 years,work 3 days a week and love my job i need to work for my self not for the money,it keeps me active .i also hate it when people say how well i look and i think how can you say that when my body is not doing what it should be doing and i feel so rotten ,but like Mary says at least we look good .i have met so many people on the forum who understand what we are going through ,stay positive and keep busy.Hope to hear some more from you soon a;ll the best

sue

[Patsy]

Hi Ann
I have PD for 10 years. from the day I was diagnosed my husband never accepted I had PD. he would occasionally say "there is nothing wrong with you" sadly he passed away 3 yrs ago still not believing I had PD . We were married for 38yrs.
I think it is fear of the "unknown", Hopefully in time your family will come to accept it.
Stay positive, avoid stress and anxiety. It is hard not been as active as we used to be, (doing things more slowly,) in time you will learn to live with it. I have.
Just think it is another phase in our lives, and there is always somebody worse off than we are.
Don't think of the future, just live one day at a time.
STAY POSITIVE!! it helps a lot.

Patsy

[ann harper]

Originally Posted by Diane

Hi, Anne.

I am the wife of a parkinson's disease sufferer. I think you are right that we remain in denial for such a long time. It isn't that we aren't with you 100%; it is just that the meds work so well and the changes are so gradual that we can trick ourselves into thinking it is not so bad!! For you, the losses are relentless but we get a little reprieve when we see you doing so well and remaining positive. Can you tell us what your family does (or fails to do) that is hurtful to you? We could all be better partners for our loved ones if we understand your feelings.

I have found this forum to be truly a blessing. We are all dealing with PD in one way or another, and everyone is so willing to help and share ways of coping with any problem. I hope you find the same on here.

Diane

Hi Diane - thanks for e-mail I have never used this system before so hope am doing it right. You ask what my family do or don't do that hurts and I think the simple answer to that is to talk!! I know they would hate it if they knew how I felt. I spoke to my Neurologist a couple of weeks ago and I know it sounds silly but I feel there is a stigma related to Parkinsons - people talk openly about other illnesses ie diabetes.
I also find some friends attitude very strange which makes me anxious which, in turn, makes my tremour worse!!

[heather]

I'm Heather and been a carer for Jim for over 13 years, he has a illness that mimics PD, and no medication works.
reading your post is like a mirror image of our lives, and many more on hear, I think everyone /family go through the denial/ostrage[spelling ugh] stage, it's find the way to cope with it as a family is the only way you will cope
read carefully what Lonely, Diane, Suzie Q and Mary say, it may help you to realize we all individuals and so all have our own way of coping
How we cope
I have all ways been a positive strong headed [bossy], and some times to outspoken, but that's how i cope [I'm a Leo lol]
So i got my family together, told them what was what, and sat back and watched , my daughter great, but she is also a Leo, my Son [Ostrage] he knows what is going on from day to day, but never asks Question, and thats fine thats his way of coping, my oldest brother is great, and treats Jim as if nothing is wrong [ Jim is fully dependent on me, and has no mobility or speech] my younger brother is the opposite though he visits he doesn't say much, I discussed this with Jim [when he could talk] and he agreed it must be hard for him and Jim understood this
we have 3 Grandson's one 11yrs who knew Jim when he could walk etc, and he tells the others stories about his Taide [Grandfather] taking him out etc etc , 2 nd Grandson 8 yrs who can vaguely remember Jim walking etc our Youngest was 6 last Friday, and only knows Jim as he is know, but he does the most with Jim, if he wants something he says "Taide wants a sweet" or tells his dad Taide "said," things like I don't have to have a shower he has also taught Jim to thumbs up, for Yes, and down for No, the best one is to pull tongues to say " I love you,
Hope this makes sense, what I'm trying to say is Honesty, openness and tolerance by all is how we cope

[Mary]

Hi Heather
Lovely to read your summary of family's reactions.It is true we all react differently .My two eldest daughters cried on each other's shoulder, I dreaded telling my youngest daughter but her reply was " I knew I have been reading all about it". I know they do talk amongst themselves about possible consequences but we just get on with life as it arrives each day.
Mary

[heather]

Hi Mary
I think you have said it all
we just have to get on with life, I'm afraid it's something that will not go away.
we have as a family have learned to accept it, but not like it, some one on hear once posted, it's like having "a unwanted lodger,but we don't have to make it welcome or comfortable"
or as we say the

[suzie Q]

Well at least we are alive thats what i reckon, can still do things only a little slower.and have a sense of humour.


sue