For those who care for someone with Parkinson's disease
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By cmonge On 2013.01.02 12:38
Okay, I am a planner, not a person who can live with an uncertain future. Therefore this whole Parkinson's thing with my husband is difficult because I feel my whole life is on hold waiting for the inevitable-but when is that going to come? I would like a timeframe of sorts so I can do some financial and life planning but no one will give it to me! My husband was diagnosed about 5 years ago. He is in Stage 4. He had DBS but needs adjustments every 3-4 months to control tremor. His memory is shot and his mood swings are horrible, I think he has mild dementia. He suffers periods of incognitence. Walking a lot and crowds are hard for him but he can take care of himself although it's really hard for him. He retired--he can't work. He can be abusive when he gets in a mood (he is also bipolar) and can't take any Parkinson's meds. Can someone please tell me approximately how long before he is wheelchair bound and into Stage 5. He seems to think he has forever, but I see decline everyday. I really need help here. I am desparate for answers. I should mention that although he was only diagnosed 5 years ago, it is likely he has had it for about 15 years.

By LOHENGR1N On 2013.01.02 18:49
cmonge, I'm sorry you're having such a hard time coping with your Husbands disease. I really don't think you will be able to find anyone, Doctor, Caregiver, Nurse, Hospice, estate planner, anyone who is credible to give you information you seek. Progression is not on any time schedule except the stricken person's own. What that time frame will be No One knows. At best it would be a guesstimate and an uneducated one at that. I'm sorry but there are no answers to your question. Time is a strange thing it can drag on or fly by quickly and can seemingly do both at once. all one can do is try to make the best of it with what is left. Again I'm sorry I have no answer, nor does anyone here on earth have it I believe. Take care, best of luck and hang in there.

By jcoff012 On 2013.01.02 21:55

I understand your desperation, but I waited to respond because I figured Al, or someone else with PD would have more insight. No one can predict the future, especially with this disease. It has a life of its own. And, it just goes forward, no matter what we say or do.

I learned early on that life changes in a heartbeat...One September morning, thirty years ago, I told our 15 year old daughter goodbye on the second day of her sophomore year of high school...then, the unthinkable, we lost her from a head injury when she was hit by a car in the crosswalk of the school. Fifteen, straight A student, gone before she had a chance to really live...two days after having her braces removed...

So, if anyone tells you a timeframe, I would be wary. No one knows. All you can do is move forward. We have our financial future in order, health and life insurance are planned, too. DNRs for both of us are file and end of life decisions are written out. We are planners, too. But, we are realists and know things can change in a heartbeat.

My husband's mother had PD for 22 years and never had tremors; my husband seems to have had tremors since dx.

You just don't know what your life will be. I say plan it as if he was not sick. If you want to pay off your home, do so. If you want to save money do so. Make your life and your future as meaningful and lovely as you can, so you have no regrets.

Just my opinion and I defer to the amazing people on here who are farther along in this journey. Jane

By cmonge On 2013.01.03 10:50
Thanks everyone, the problem is, I want to plan knowing it could be 5 months or 5 years. My husband thinks he has all the time in the world and because of his mental state won't do anything about it. Can I just do it on my own? He won't even give up doing the finances. If he gives this up then he feels like he has no purpose. It's so frustrating because I feel like I am in limbo. I don't want to be stuck picking up the pieces and dealing with a mess.

By daisy On 2013.01.03 15:09
Hi cmonge. My Dh was diagnosed 6years ago, but like so many others probably had lesser symptoms, although not recognised for many years before that. About a 18th months or maybe 2 years ago, I felt exactly like you. He had deteriorated rapidly, physically and mentally and our business was failing badly as a result. I was desperate to salvage the remains of our life and security for the future and I could see the end result and the financial problems that would arise if I let it all go. I tried everything to try to persude him of the wisest plan of action. To no avail, he just couldn't see the problems, nor could he recognise nor accept that there was any cognitive decline. By the way, neither did his drs. I spent so many sleepless nights trying to find a way around it, until I was completely stressed. Like you, I would like to know what's ahead, whether it's good or bad . I felt like everything was out of my hands and I felt useless, I hated it. The truth was I had to just accept that for the time being I had to roll with the punches and make the best of things as they were, until something..anything changed. Today.. our business is practically finished, my Dh eventually accepted that it couldn't be kept going. Yes.. we are much worse of.. financially and who know what the future will bring. But some things have become easier. Hubbie is slowly coming around to recognising his limitations mentally and while he has not yet acknowledged this to the docters.. I suppose in time it will become apparent to more than just me. I have come to realise that I have NO control over this monster that has entered our lives and it will take it's course, not matter what. Until then, all we can do is support each other, vent when things are bad and smile when they are good.

By jaxrock On 2013.01.03 16:38
I don't think the doctors even know the "timeline" of this awful's so individual......depending on so many factors....
I now do all of the financial things in our husband gets so confused when discussing the most minor business-related matters.....To keep him feeling a part of all of this, I make copies of things I've taken care statements, bills I've paid.......just so he still feels "connected" . But I know he doesn't understand a lot of it.... He keeps talking about buying a new car.......well, we're not doing that!
It's almost like his cognitive decline has now colored all facets of our lives.....
Luckily, he looks still sociable and wants to keep going as long as he feels able to......But, I certainly know he's not thinking like his "old, smart self".
It's hard to realize that he's not "whole" any so many ways.
He was diagnosed 10 years ago........probably had PD prior to, timeline? who knows........
I guess we have to keep pushing ahead as best we all can...and take it easy when we have to.
Take care.

By lurkingforacure On 2013.01.03 17:30
I think the advice everyone has given is good, although I would imagine if you are really a planner, not very comforting. From a really concrete, no emotions standpoint, if you must plan to make yourself cope better, then plan. But how?

Start by researching online, and if you can afford it, meeting with an estate attorney who is experienced in disability matters. If your husband simply will not participate, do it alone. You can get a power of attorney, living will, etc., by yourself. Perhaps if he sees you trying to plan for your futures, he will get on board. You could even let him know how much easier it would be if he would help the process and actively participate.

Just a suggestion. Good luck:)

By jaxrock On 2013.01.04 06:29
Oh, yes.....lurkingforacure is so right....

Planning with an estate planner/lawyer, also making sure about all necessary insurance coverages.............and in most cases you can take care of these things by yourself.........

Even thinking about "end of life" issues is's difficult to discuss, but, at least you may get some idea what is and what is not desirable.

Planning those things are a "must"......for your peace of mind

Then you can get on with your day to day living......

Good Luck

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