For those who care for someone with Parkinson's disease
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Topic Newly diagnosed and need suggestions. Go to previous topic Go to next topic Go to higher level

By Connie1955 On 2013.11.13 10:54
My husband is 62 and was diagnosed yesterday. I want to begin this journey with the right attitude and information. But at this point I do not know where to begin. Anyone who has first step suggestions please feel free to respond.

By stillunsure On 2013.11.13 11:28
My husband is 75 and was diagnosed about 1 yr ago. All I can say to you is not to panic (too much). Everyone's progression is different!! A good movement disorder specialist (neurologist) is very important and should be someone you can absolutely trust. This is not always an easy task depending on your location. My husband still drives and usually is pretty independent.

With that said, reading all these posts can be helpful and sometimes scary. I can only say that a good attitude and outlook is essential, even though it can be difficult at times.

I don't post too often, but wish all who do post many wonderful thoughts & wishes for the holidays. Good luck to you and your husband.

By Connie1955 On 2013.11.13 20:47
Thank you for your reply. I did not know where to begin.

By VioletV On 2013.11.13 21:13
There are a number of good books about Parkinson's. I'd suggest taking a deep breath, and realizing that having a good doctor is key, along with beginning to inform yourselves about PD.

As a partner to a person with Parkinson's (a PWP), it's a good idea not to rush in too fast, (I think) to take over tasks/skills that the person can still do for himself. It's a long haul, and, IMHO, you want to remain a care PARTNER for as long as possible, before taking on the role of care GIVER.

And, welcome to this forum. I'm a relative newcomer here, and have found enormous kindness, support and assurance as I've dived in to the Parkinson's journey.

By Trusting On 2013.11.13 21:19
We are in Missouri and they have a group for Parkinson's through the "Disability Resources". Check your area for support. I love this forum because I was where you are now about two years ago. My husband can't drive anymore but other than that tries to stay busy with as much as possible. He has the slow movement type of PD so he doesn't drive due to slow reflexes. His nuerologist furnished me with some things to read and we began important vitamins. The Dr.'s infor said the CoQ10 was a really good supplement. There is also Evening primrose and more. Have him eat good and avoid a lot of protein b/c it can interfere with the medicines as I understand it. I fix more casseroles so that I can stretch the meat out instead of having one large piece on his plate. I don't know how much is too much so again, talk to the dr. Your spouse may not be on the same medications as mine.

The people on this forum have been wonderful and will answer any questions or concerns as much as possible. I know they have helped me a lot. Best wishes to you and remember, you are on a journey neither of you has ever traveled before.
Blessings to you....

By carman96 On 2013.11.13 22:14
You are right to get as much info as possible but try not to think too far ahead. My husband was diagnosed at 58 and is 9 years into it. The neurologist thinks he has a Parkinson's plus which is progressing faster than "regular" Parkinson's, if there is such a thing.
But we had quite a few years after diagnoses that the medications seemed to really help most of his symptoms. We did a lot of traveling and were quite active. So get a good neurologist that is a movement disorder specialist, follow their advice, try to stay healthy and just enjoy life.

By jcoff012 On 2013.11.13 23:01
Hello! I sat back and let others welcome you, but now it is my turn! Welcome. know you are among friends who wish, like you, that we didn't need to be here. But, we do, so take a deep breath and relax a bit. Hearing , "You have Parkinson's" is scary and changes your lives forever.

However, I am known to be "the optimist" here...and, for us, that's ok, too. My husband and I choose to try to be upbeat as much a possible. At times, of course, that is difficult. PD progresses differently for each PWP. Even we optimists have hard days and, as the disease progresses, little things change and force us to face struggles for which we were not prepared...that is where this forum can really help in your journey.

Post often and reply whenever you have a comment or a question. No question is insignificant. We are not doctors, but we all want to help each other if we can. We are all at different stages and have different opinions. We have been known to argue through to a conclusion, but never with malice. We are here to bolster each other when we see someone is hurting, and are here to answer as best we can.

There are several PWP who monitor the forum and let us all see PD from inside the PD 's mind. Their insights and wisdom are paramount to our journey. They will be along soon, I am sure.

My name is Jane and we live in the Bay Area of California. My husband has had PD for over four years. His mother passed four years ago from PD, so we have had considerable insight into the daily and long term issues involved.

Hugs and good luck. Remember to go slowly..and have time...Jane ;)

By Connie1955 On 2013.11.14 09:04
I thank all of you for your kind responses. I have to admit after reading some of the postings I am overwhelmed. My husband is nearly 63 and still driving and working but over the last 2 years has steadily exhibited signs that indicated some sort of problem. Within the next couple of months his company is downsizing and we expect his job to be eliminated.
He has had a tremor in both hands for the last two years that his general physician told us not to worry about. He shuffles when he walks and now he has trouble remembering everyday things. We decided a month ago to consult a geriatric clinic in our area associated with one of our large universities. I think we have the right people handling his care. It sounds like we have a long journey ahead of us.

By Lynnie2 On 2013.11.15 14:04
My husband was diagnosed when he was 59 and let me tell you it was a shock.
He is 65 years old now. We didn't tell people other than family for quite a while but finally everyone knew.
I want to tell you not to baby him. I think I babied him too much for years, and if I had to do it over again, I wouldn't do it as much. My daughter often said that I should let him do more things for himself.
The problem is that he doesn't have the same strength or the same thinking power, so I've had to take things over especially the banking business.
I am glad you are starting out fresh and hopefully your husband has a good attitude and exercises and does things to help himself.
My husband gets his back up if I suggest certain things to help him. His voice has also weakened and he looses words when trying to explain things.
Exercise is important but it won't heal Parkinson's, however, it better to stay active if he can. My husband has a weak back and can't roll over in bed without sitting up, so you may find that might happen with your spouse.
I wish you two the best and tell him that he isn't alone. There is also another website called Daily Strength where people with PD can start a subject and other PDers. respond or their spouses. I find it very supportive. It also has other support groups such as Diabetic, Cancer, etc.
Oh, and he also goes to a MDS twice and year so hopefully you can find one.
I am from Canada, so I can't suggest anyone for you.

By trapper On 2013.11.15 17:35
What is MDS.

By Lynnie2 On 2013.11.15 18:31
MDS is a Motion Disorder Specialist. He is a neurologist but specializes in Parkinson's or motion disorders. His MDS is at the top of his field.

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