For those who care for someone with Parkinson's disease
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By Elly On 2011.06.25 21:32
Hi Everyone--I'd like to introduce myself--my name is Elly and my husband was diagnosed with Parkinson's three yrs ago at the age of 49. Since then it's been difficult--falls, broken bones, etc but we are hanging in there. I'm glad I found this forum. I am encouraging my husband to participate in Brin's 23and Me Parkinson's genetic initiative. It's so frustating how little is know about the causes of this disease. We've got to find a cure!

By LOHENGR1N On 2011.06.25 23:33
Hi Elly, Welcome to our forum. You've found a great place for information and understanding here. Great People here always ready to help if and when they can. So settle in and agian welcome to our family.

By karolinakitty On 2011.06.25 23:52
Hi Elly!!!!! My guy has been diagnosed 3 years also, age 54...We figure he has had it longer, we just brushed some things off as old age creeping in....
It might really help you to read earlier posts. If there is something you aren't sure of try the search will lead you to previous posts and hopefully give you some answers.......

By jockdoc On 2011.06.26 07:29
Welcome Elly. The Forum has been a Home for me. I'm seeing PD from the other side now. Barb and JockDoc's battle ended 3 years ago. I read the Posts everyday.
You will find many good friends here. JockDoc

By Elly On 2011.06.26 09:22
Thanks for the warm welcome, everyone. I really appreciate it. Already I have found the forum posts very informative--actually a little too informative. A link from one of the members just confirmed my fear and my suspicion that my husband's PD is getting worse faster because he doesn't shake---just overwhelmingly stiff. Oh well, there's not a darn thing I can do about it except for us to have a nice day today. And he's making breakfast for my family as I write this so that's a good thing.

By parkinit On 2011.07.12 14:41
I've been off the forum for a while, but back on again now (computer was on the glitch). We're so glad you found this site, Elly. You'll find it very helpful, as I have.

By gap2010 On 2011.07.14 18:34
Hi Elly, My husband was diagnosed two years ago at age 48, but we believe he has had it for at least 7-10 years before that. He is now no longer working, very stiff, tremors,confusion at times, masked face, dizzy and unsteady on his feet at times. This place has been a wonderful resource and support for me. You will find advice, support, empathy, sympathy, and friendship. Welcome and look forward to hearing from you again.

By ILoveWil On 2011.07.15 17:36
Hello Elly, my sweet husband is now in the last stage of this terrible disease and he is now in ICU with Full Life Support status. I'm so glad you found this forum. I found it only several days ago and I has saved my emotions from going over the cliff. You have found such a warm circle of friends here to be your information as well as your encouragement and just when you need it. Keep posting and watching as they lovingly share their experences and results with you.

My heart felt advice to you would be this. Even though you may at times be irritated with your PD spouse, just give them all the love you can while you can. I would give my right arm to be able to repeat the last 6 months with my Wil. I don't have a lot of regrets but there was so much more I could have done to show him how powerful he is in my life and I could have been less busy with my own projects and engaged more with him to help him finish the book he was trying to write with me. I could have traveled more with him and given him more happy memories. I am literally crying to God for Wil to have at least a short recovery, a little more time so I can do more for him.

Make every day count with your loved one. With PD time can be very short. I think my Wil completely skipped stage 4 and went straight to stage 4 after this fall, broken hip and the Urinary Trak Infection. He stopped walking, stopped eating, stopped talking all in only a 2 week time period. Oh how much I want him to come back. His eyes opened yesterday for about an hour or so. But today he has sunk back inside, no movement, no response. I am at a low again. Came home for several hours to read this Forum and to sit on my wrap around porch and feel the breeze from these mountains. I needed refreshment before I face the gloom and doom of my situation in that ICU.

One minute I am a woman of prayer and the next minute I feel this overwhelming sense of loss and loneliness. But I am always encouraged when I read this Forum. These are such beautiful and powerful caregivers.
Elly I will be watching to see your progress and your posts. I hope you know the peace that prayer can bring to you. Much love to you.

By Lynnie2 On 2011.07.16 10:53
Hi Elly, Don't be discouraged by some of the posts. Just take one day at a time and enjoy life as much as you can. If there is something that you two can do together, then do it now, rather than waiting. My husband was diagnosed almost 4 years ago at age 59, so it was quite a shock too. He gets tired easily and doesn't have the same strength, so we moved to a new place last year from our farm. Anyway, this forum is very good and really better than a support group. I used to go to one but my husband didn't go for a while. However when he started to go, it only lasted a few times. He doesn't enjoy seeing other people with the disease as it depresses him, so I didn't push it. I don't go anymore either as I would rather he went too. Anyway, you get alot of support from this forum and I also belong to Daily Strength where you can start a discussion or get information from people with different diseases including PD. It is mostly for patients but caregivers are also on it. Take care and hopefully your husband's progress slows down. LYNNIE

By LOHENGR1N On 2011.07.16 13:44
I second Lynnie2's post Elly, Fight getting discouraged,We all progress at different rates and when the right medication levels are hit or a medication is tried which helps there can be remarkable results in easing mobility for a time. Being "new" to this disease you're going to discover a lot but just because one thing or another might develop it doesn't mean it will develop! Stay with Us, keep posting. (In case you haven't read in other posts..I'm turning 59 next month and I was diagnosed at age 33. So We never know what "package" of symptoms or progression we have) Take care, best of luck and hang in there.

By plcpainter On 2011.07.16 21:31
Dear Elly,
When I first joined this support group 4 months ago I was overwhelmed and slightly panicked by the amount of information I found. Ignorance is bliss? But I KNEW I needed to educate myself too and this forum has been invaluable in providing uncensored truths about PD. I have also found, in myself, and in the posts of others, wild fluctuations in emotions as we caregivers (and patients!) struggle to come to terms with what is happening to our loved one and our lives together. Some days we are strong and some days we feel defeated. That is part of the battle and that is when this group really becomes powerful. We ALL get discouraged but this disease has a cyclical nature. A month ago my husband was struggling with remembering who I was on an almost daily basis. The past three weeks have been marvelous -- he's been sharp and never once forgot me! :) So we take our victories and celebrate, eh? Take care and be gentle to yourself. Sending you my best wishes!

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