After my and my husband's 15 years of dealing with Parkinsons, I still have to ask for help in accepting what this disease has done to him. He has learned to accept the many limitations he now deals with. I, on the other hand, find it difficult to face them. I tend to make excuses for his tremors, his balance problems, his trouble eating without spilling his food, etc. Our friends overlook these problems; why can't I? I feel embarrassed for him (maybe more for me) when we are around people who don't know what he is dealing with. We have been married 55 years, and I know that he is the same person I fell in love with all those many years ago. I still love him, but it is so hard to see all the things he is no longer capable of doing. I am going to talk to my pastor and see if prayer can give me some help in dealing with these feelings that I can't seem to accept. In the meantime, this venting is a beginning; it's the first time I have admitted this problem to myself.

JoClay: I beleive it is worse for the caregiver. I am sure your heart breaks for your husband, The caregiver notices the side looks and stares - probably more so than the person with PD. Not only is your husband cheated but also you are cheated. He has to accept the makeup of his body, You don't have to do anything if you so choose, but you do try to take some of the burden off him. Voluntary giving is much higher a virtue than the forced nature of your husband's PD. I feel for you. I feel for my husband.

Thelma - I can always use a friend.

Ann

i know how you feel. i could say i got used to it, but how does one actually do that? we have pride and dignity that sometimes gets slammed. but, i try to put my mind where their mind is. i think the majority of people just dont know what to do. i know how frustrating this is, but now i see it from a different side as i watch steve go through. again i will say that the majority of people just do not know what to do, but bless the hearts of the people who try. its a whole different world having pd.

i remember once i was on an airplane and when the flight landed, i had turned into a statue and could not move to even get out of my seat. i was horrified as i overheard the flight attendants speaking about the proceeding flight now being late and the more stressed i became, the worse i got. the pilot came back to sit with me saying his father had pd. he stayed there until i could move. i will never forget that man. humans are basically by nature caring people, but in some situations.. like witnessing pd.. they dont know what to do. thank God for those who do.

when mgh was hot... some people here remember it..it saved my sanity. by the time i found it. i was 10 years into my dxd and had never seen any other young onset pd. it gave me a sense of finally someone understood me. when mgh went down and many gravitated to braintalk, i followed and the same compassion stayed strong there with new people joining our family. now there is a new family neurotalk and it offers the same comforting support.

my history is long and weird, but some of the senior members here know it and were even part of it. as i went through the shock of being misdiagnosed after nearly 20 years, they were here with me. and now, after being away for a couple of years, i check back and find the same wonderful support that has always been here. this is a sanctuary of people who do know what to do

Well Hi Harley
I am so glad you have posted as I think of you often and wonder how you and Steve as well are doing. We really need to get it in gear here and keep in touch if even months apart. When I read just information on research and test trials it gets me wondering when it will end. I feel it is much closer than I once thought but still too far away for most here.

Stay in touch please YOU are missed

with utmost respect for you and what you have suffered through I remain still hopefull for you and me and all who hurt both the caregivers and the sufferers

Thelma

Is sufferers really a good word to use oh what the h you know what I mean.

It is not you who is needy, but the other folks who are needy for a bit of meaning in there lives by helping others who they perceive to be less fortunate. It is a trait that makes us human. So, Ann, I would say to help these folks feel good about themselves by letting them help you. And then you can feel good about yourself for helping these folks out. Or you could be very demanding and unthankful and people would be reluctant in giving you any help at all. You probably don't want to go that route.

I guess all us Parkies have to adapt. I cannot just pick up a guitar any more and play when the mood hits me. So I cope by creating amateur cartoons.

https://www.youtube.com/watch?v=g8G5UQrfm3E
https://www.youtube.com/watch?v=Vbur5xvrqSQ
https://www.youtube.com/watch?v=5OrECMgizOQ

They are hillarioua