Hello Lily,
I am sorry you feel despair although quite understandable, but please remember some of the comments are just trying to help other people not feel so alone and please also remember that some of us have been coping and living with pd for 20plus years and life just not stand still.
In the thirty years my husband has had pd he has achieved many things and is still able to grow plants attend college two days a week 90% of the time, he also likes fishing and cooking when able. He certainly has had more trips out and social pub lunches than I have through the clubs he has joined, he still manages to do quite a lot of these with full time care. We have always said that to keep busy even though it may be difficult at times is what keeps you going, so enjoy each day.Please keep positive as we have had many happy times with other pwp/carer's and made some very good friends.
Sorry, Vivian … blurted that one out. Mea culpa and all that.
No, actually, not my fault, not your fault, not anyone’s fault.
Love to you and your husband.
Lily xx
No, actually, not my fault, not your fault, not anyone’s fault.
Love to you and your husband.
Lily xx
Dear Lily,
I believe that you are entitled to feel despair from time to time. We are (or rather I was) told on diagnosis that it is an incurable, degenerative condition. Doesn't mean much when your only problen is a shakey left hand. It is only when the degeneration begins to show itself in other areas that the reality hits home. I am constantly amazed by the fortitude of pwp and their partners/carers. I take much comfort and inspiration from the stories of people who are coping as best they can with this condition.
But I have to say that (selfish as though it may seem) I mourn for the things I used to be able to do with ease and enjoyment.
That is not to say that life with pd cannot be enjoyable - just different?
I believe that you are entitled to feel despair from time to time. We are (or rather I was) told on diagnosis that it is an incurable, degenerative condition. Doesn't mean much when your only problen is a shakey left hand. It is only when the degeneration begins to show itself in other areas that the reality hits home. I am constantly amazed by the fortitude of pwp and their partners/carers. I take much comfort and inspiration from the stories of people who are coping as best they can with this condition.
But I have to say that (selfish as though it may seem) I mourn for the things I used to be able to do with ease and enjoyment.
That is not to say that life with pd cannot be enjoyable - just different?
My dearest dearest Lily, Please dont despair, and please always feel okay about saying how you feel on this thread and if its despair, share it with us all thats what we are here for.
Also I want to reinforce what was said some of the people on the thread have been living with pd for 20 years plus , their problems are hundreds of miles away from a new diagnosis. Also everyone's pd is different, not everyone gets to a stage where their carer cant meet their needs anymore.
eVERYONE in the forum has parkinsons disease, some mild, some moderate and some advanced, some directly and some indirectly [ie the carers]
Many people in the world are not affected by parkinsons and they have worse and less happy lives than all of us on here
lots and lots of love Sunray
Also I want to reinforce what was said some of the people on the thread have been living with pd for 20 years plus , their problems are hundreds of miles away from a new diagnosis. Also everyone's pd is different, not everyone gets to a stage where their carer cant meet their needs anymore.
eVERYONE in the forum has parkinsons disease, some mild, some moderate and some advanced, some directly and some indirectly [ie the carers]
Many people in the world are not affected by parkinsons and they have worse and less happy lives than all of us on here
lots and lots of love Sunray
Dear Lily,
[u]Please[/u] do not feel that you have anything to apologise for that is the whole point of the forum, that you can speak freely and know that people understand. As the others have said everyone is very different and we all have any number of changes to our lives.
We have been involved with pd for almost 30 years and we have had some lovely times with other people with pwp, although my husband is in care now I still have many friends who are coping with pd and try to help by sharing information and support where I can.
What we have learned, the most important thing to get as right as you can is good management of the meds and be ready for many changes over the years as your condition changes,by the way my husband has never had a shaky hand and many people don't.
Try to look at it a different way, you have this disease and is not going away so do all the things you wish to do in life and what you may have thought about doing when you retire NOW and enjoy.
Just a point about delaying medication, I remember a lady saying she didn't want to start on the meds until she really had too, and she waited a bit too long which meant she couldn't really enjoy her sons wedding, after she wished she had started a bit sooner, so there is an optimum time when things get a bit of a struggle its time.
Anyone who has this condition deserves a medal because it is so complex,and it always surprises me the fantastic humour people with pd have.
Have a lovely day and no more apologises please.
Love and prayers
vivian
[u]Please[/u] do not feel that you have anything to apologise for that is the whole point of the forum, that you can speak freely and know that people understand. As the others have said everyone is very different and we all have any number of changes to our lives.
We have been involved with pd for almost 30 years and we have had some lovely times with other people with pwp, although my husband is in care now I still have many friends who are coping with pd and try to help by sharing information and support where I can.
What we have learned, the most important thing to get as right as you can is good management of the meds and be ready for many changes over the years as your condition changes,by the way my husband has never had a shaky hand and many people don't.
Try to look at it a different way, you have this disease and is not going away so do all the things you wish to do in life and what you may have thought about doing when you retire NOW and enjoy.
Just a point about delaying medication, I remember a lady saying she didn't want to start on the meds until she really had too, and she waited a bit too long which meant she couldn't really enjoy her sons wedding, after she wished she had started a bit sooner, so there is an optimum time when things get a bit of a struggle its time.
Anyone who has this condition deserves a medal because it is so complex,and it always surprises me the fantastic humour people with pd have.
Have a lovely day and no more apologises please.
Love and prayers
vivian
PS Lily, I miss you & Turnip on the Creative thread. We had fun did we not?
Dear Vivian, AB and sunray
Thank you for your understanding. You’re all such lovely people and I really appreciate your efforts to make me feel more optimistic. Just reading your posts has helped me – and, I hope, others too – to put things in perspective.
AB – yes, we must have another trip to Creative Corner for a bit of silliness. I would really like to be able to create something profound but am forced to accept that my roots are firmly planted in the limerick end of the poetic spectrum!
Love to all
Lily xxx
Thank you for your understanding. You’re all such lovely people and I really appreciate your efforts to make me feel more optimistic. Just reading your posts has helped me – and, I hope, others too – to put things in perspective.
AB – yes, we must have another trip to Creative Corner for a bit of silliness. I would really like to be able to create something profound but am forced to accept that my roots are firmly planted in the limerick end of the poetic spectrum!
Love to all
Lily xxx
Hi,folks! I've just read all your posts.& felt a bit dismayed. But I think I'll try & follow Lily's advice & put things in perspective. And ,seeing as I am independent ,with only mild symptoms comparitively speaking, I shan't look toooo far ahead. It strikes me you all cope amazingly well, & I hope I can do as well,if the need ever arises. Best wishes to all. ElleMac.
You will Ellemay. It's amazing where we find the strength , I am really pleased /proud even with the way I have coped with supporting my husband . (By the way it is our 55th wedding anniversary tomorrow). Not sure if he will remember he hasn't been too well this week .
I think we all take it a day at a time , and try not to dwell on the future tooooo much . Good luck to you and I amsure you will find this site very supportive . There is usually someone who will come up with any answers for you .
I think we all take it a day at a time , and try not to dwell on the future tooooo much . Good luck to you and I amsure you will find this site very supportive . There is usually someone who will come up with any answers for you .
Hello everyone,
I hope you have all had a good day and have been able to enjoy the sunshine.
Many congratulations Jonnie to you both and I am sure you will be very happy to just see a smile on your husbands face. Have a lovely day and be happy that being together still is a real gift.
best wishes
vivian
I hope you have all had a good day and have been able to enjoy the sunshine.
Many congratulations Jonnie to you both and I am sure you will be very happy to just see a smile on your husbands face. Have a lovely day and be happy that being together still is a real gift.
best wishes
vivian
Happy 55th wedding anniversary Johnnie and h and very well done to you both, please give h a hug from me.
Hello Elliemay you'll be fine.
love sunray
Hello Elliemay you'll be fine.
love sunray
Thank you very much both . Unfortunately not the best of anniversaries although along with worries quite a few smiles .
The GP is trying to find the best drug to help my husbands fluid retention and he has upset the apple cart .
They have affected him inas much as he has been confused and hallucinating . Dam drugs It was a drug that caused the problem in the first place .
He has come out with some really funny things have had 2 GPs out so hopefully ? .we are now on the right road
At least he is still with me to tell this story ..
The GP is trying to find the best drug to help my husbands fluid retention and he has upset the apple cart .
They have affected him inas much as he has been confused and hallucinating . Dam drugs It was a drug that caused the problem in the first place .
He has come out with some really funny things have had 2 GPs out so hopefully ? .we are now on the right road
At least he is still with me to tell this story ..
Ahhhhhhh Johnnie give him a hug from me and give yourself a hug from me too love Sunray