For those who care for someone with Parkinson's disease
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By Birdie On 2017.05.10 14:12
Where to begin? We've been married a year and a half. Husband showed no obvious signs but hindsight...a mixed blessing...points to things we didn't realize were indicators. Over the past year there have been so many changes physically, emotionally and mentally. He was diagnosed a few months ago.

I'm 55. He is 65. We don't have the many years of a solid marriage behind us. I meant my vows but find this to be an overwhelming challenge. I was my father's primary caregiver for years. He died last fall.

I know I *can* do this. But right now I can't even articulate how I feel. Sad. A whole lot of sad.

By pinki53 On 2017.05.10 17:56
Welcome Birdie. I'm new to this forum myself, but my DH started symptoms in 2002 and was officially diagnosed a few years later. The first few years were manageable for us. We thought "oh yea, we got this". Progression was slow for a few years and has speeded up in the last 5 or so. I even lost my job cause the bosses didn't like the time off I had to take - and honestly it wasn't that much, but...
We have 30 years of marriage behind us. And similar to you 12 years separate our ages - he will be 76 this year, I will be 64.
Important to remember is that no two Parkinson's patients are the same. Changes take place at different rates. Not every one has the same symptoms.
I think my DH has been hit with almost all the symptoms except Dyskinesia. I thank God he has been spared that one so far.
Hang in there.
Enjoy doing things together when you can for as long as you can. Use a wheelchair when he needs to. People are so kind to help us.

By kardye On 2017.05.10 22:39
Hi Birdie I am also new to this forum and have many of the same feelings. We have been married 21 years this June and I am 58 and my husband is 65.
He was diagnosed over a year ago, but the Doctor said he probably started with PD over 10 years ago. Symptoms were definitely there once you know what to look for. He has changed a lot as well physically, mentally and emotionally, which I find the hardest to deal with. It is very hard some days, but at this point he is still able to work, but we know that the future is so uncertain.
I also moved back home 2 years ago with my husband to take care of my father who passed away over a year ago. My Mother could not do it alone. Being a caretaker is very hard on everyone and after my Dad died we thought at least he isn't suffering anymore and maybe we could take a breath. No luck, now we have PD to tackle and now a sick Mother. Love keeps me going as I know he loves me unconditionally and has always stood by me even when I was sick when we first met all those years ago.
I will do what I need to do to make sure he is ok and I also know that it will get harder as time goes on, hoping the PD progress is slow allowing us to enjoy life as best we can together! Hang in there I am finding the post very helpful and informative as I continue to read through them. Take care.

By Birdie On 2017.05.11 09:17
Thank you for the kind and supportive replies. I'm still at the point of looking up terms I don't understand.
Hubby's PD diagnosis was three months ago. I realize there were symptoms we didn't recognize earlier than that, so can't be sure when it actually started. What I have noticed is that over the past year things seem to have progressed rapidly. I know "rapidly" is relative, but I can only go by what I have observed and what people who haven't seen him for awhile say.

I have read many posts here, some of which really had me nodding in recognition. This is a wonderful resource and while I wish none of us had a reason to be here, I'm glad for the support.

By LOHENGR1N On 2017.05.11 17:18
Hi "guys" welcome to the forum. You've found a great resource here. A lot of knowledge and sage advice. Don't feel bad you can in hindsight see some warning signs of Parkinson's. The rule of thumb is Doctors will give you the "standard" probably had it for 10 years give or take. As will most sights associations and organizations. Along with the approximate 80% loss of dopamine production in the substantia nigra. One fact that seems to be glossed over at diagnosis is the 80% loss.
We patients and caregivers, spouses need to remember that pre-diagnosis a stooped posture, or loss of ability to smell, trouble sleeping etc. All are looked at separately. We can go for years with vague symptoms and complaints. Different doctors looking at different symptoms. Until We reach that 80% plus or minus loss of dopamine. Then our disease becomes diagnosable. Then Neurologists can say with some certainty it is Parkinson's Disease. So the Doctors for the last 10 years didn't know for sure and they went to school and studied this disease. Many patients never think of P.D. until after a diagnosis. So how would we know what to look for? And when we use the 80% loss pre-diagnosis? Yes it seems to progress quicker because We are running on 20% of the dopamine. 20% left to run our bodies so as the disease progresses any more loss will appear quicker. Remember at 100% the loss of say 4% is not noticeable, we still have 96% left but when diagnosed we have 20% left so a 4% die off leaves us markedly effected. Which unfortunately not many in the field will sit down and discuss these things with Us and our caregivers. So we must try to not beat ourselves up because we didn't catch the subtle changes before diagnosis (remember the others doctors didn't either and they are schooled in it. Also at diagnoseble 80% loss we now are running on 20% of our dopamine and any more loss will appear more noticeable, so we take med's to supplement our loss. Again welcome to the forum it is a hard pathway to tread but you have found a place full of caring wonderful souls who will help you along the way.

By pinki53 On 2017.05.11 21:23
We noticed a slight tremor in my husband's left hand back in 2002. He had broken that wrist a few years before so his primary did xrays etc looking at it that way. Referred him to a neurologist who said it was a benign tremor. He had NO other symptoms for a couple of years. Later his neurologist (the third we'd been to) noticed that his arms didn't move much when he walked and his reflexes were not good. He diagnosed it as PD and the rest is history.

By kardye On 2017.05.11 21:46
Thanks everyone! It is great to hear about others experiences and how to cope with things as PD goes along. Appreciate all of the comments and encouragement.

By Mary556 On 2017.05.11 23:33
Best wishes and prayers for everyone here. Sometimes it is difficult to move through the sadness and tiredness. Being able to share our struggles makes the burden lighter somehow. It is a blessing to know there are others who understand and care.

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