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Topic How disabiling is PD? Go to previous topic Go to next topic Go to higher level

By farmwife On 2009.11.04 19:49
My DH was diagnosed with PD 6 years ago. He is 56 years old. Within the last year his tremors have begun on his other side. We visit the Neurologist every 6 months but he doesn't seem to provide any future concerns, etc. My DH has a strenous job and plans to work until he is 70 years old. I am hoping he can work for another 5 years. We need to have some concept of the future with PD. What has been the experience of others?

By karolinakitty On 2009.11.04 20:19
Hi farmwife...Welcome .... I'm fairly new to this board but i'll jump in here with what i've learned from these awesome folks ......
First and foremost ...Every PD patient is different ... My man is only 53, and has only been "diagnosed" less than a year. We feel he had it awhile before being diagnosed though. He can't work and hasn't been able to work for several years. I will be straightforward and hope i don't offend anyone. He has, in this last year, deteriorated quite a bit. His tremors are not so severe, but the rest of the symptoms abound.He no longer does our bills or any financial things, he has dementia, stumbles, freezes, does not sleep well, etc etc etc....
Yet, there are people he chats with on a pd chat board that have had it 20 years and are not as bad as him.
Again each patient is different. My main advice would be to take the time and read the prior posts and commentaries...it will give you a very broad view of what your future may hold....
I will think of you and hope you get the answers you need......

By Emma On 2009.11.05 05:47
Welcome! Ditto the previous post, every PD patient is different. My husband is older than yours (68) and has been diagnosed for eight years but I had noticed symptoms sarting a couple of years before that. He had to quit working within a year of being diagnosed, although that was due more to the dementia than the physical symptoms. His physical symptoms have progressed much more slowly but at this point he can barely walk ten feet even with his walker. He's in severe pain most of the time and has started falling. He's never had much trouble with tremors. He needs help with bathing, dressing, shaving. He can't turn over in bed anymore and needs help getting in and out of bed. He sleeps a lot during the day but not so much at night. The biggest issue for us has been the non physical componets of the disease; dementia, hallucinations, confusion, obsessions, etc.

This disease takes a different course for everyone. When my husband was first diagnosed I asked the neurologist what we could expect. He said that he didn't know, that he had patients who had Parkinson's for 15 years and still played tennis and others who were in a nursing home two years into it.

I hope that your husbands plan to work until he's 70 pans out, but I'd have a backup plan just in case.

By WitsEnd On 2009.11.05 09:51
I agree with the earlier posts. Dad was relatively "symptom free" with just the one hand having tremors for years. However, when the other hand started having tremors, he seemed to decline relatively quickly after that. He started having the "PD shuffle"--problems with his gait, he started getting erratic in his behavior--sleeping a lot and getting upset and angry--and then he started having problems drooling when he ate, sundowning at first--and then full fledged dementia. In the last 6 months he got where he couldn't walk and fell a lot. Of course, his age may have had something to do with his progression as well. He was 88 when we lost him--but he was relatively "okay" until he was 84 and he'd had the one hand tremor for probably 9 years before that. However, as others have said, each patient is different.

By annwood On 2009.11.05 11:24
My husband had PD for 17 yrs. He was able to work (a physician) for 12 years after he was diagnosed and the neurologist thought that was something. I think he might havwe continued to work but the dementia started about then. If you are planning for the future I would not count on your husband being capable of working until age 70. This disease takes many turns and twists so there is no real way to plan.

By dkleinert On 2009.11.05 22:57
I met my husband when he was 38 years old and one of the things I learned about him early on was that he had no sense of taste or smell, had tingling in his fingers and almost no sensation on the tops of both of his thighs. He attributed that to the high level of sports he had always done, and maybe injuries from those. But the mood swings were there about 10 years later. Then Psoriasis, then bladder urgency. He was treated for the wrong things until we finally found out he had PD at age 62. From all of the books and articles I have read - the syptoms my husband experienced early in life was PD coming on......we just didn't know it then. It can mascarade as many things until it finally shows itself.

Around age 61 I started noticing his shuffling, slow gait - he had always been a fast walker - he looked sad all the time (the PD mask), almost unreadable handwriting - really tiny (used to have great printing and handwriting), would become confused and mixed up easily, and he had a tremor in his right hand. He was an architectural engineer, so he used the computer mouse daily. He finally told me something was really affecting his work - uncontrolable twitches in his right hand on the mouse would delete hours of work on projects, etc. Anyway, with all of those symptoms he went for a thorough physical and PD diagnosis was the result.

His original Neuro told us he WOULD go 10-15 years without a problem and the Neuro told us that he could keep my husband's symptoms in check and that he would NEVER have to worry about a wheelchair.....yadda, yadda, yadda. NOT true. Within the year he was no longer able to work at his job and career, within 2 years he had to stop driving, on and on. It is now 6 years after the diagnosis, and he has dementia, sleep issues, gait problems, balance problems and he falls, behavior problems, and all manner of need for help with everything from dressing, bathing, everything. He has moments and sometime hours of "normalcy" and I think maybe he is getting "better", but it is this disease - a tricky character for sure. Then he slids back into the PD slump and is back to sleeping a lot and unable to do much or is not interested in life again.

As one of the other posters said - reading the past threads here will help you a lot - it has me. PD is very different for each individual. Read all you can.

You will never be sorry you joined us - keep in touch!

By shakydog On 2009.11.05 23:29
I am 54 and have been dx for more than 11 years. Yes I'm slower. No I can't do as much. Could I farm 18 hours a day.... No. Can I work 8 a day.... Yes... If.....

I need to stop. And time my meds. Above all keep to a schedule.

We are all different. Don't give up. Keep doing what has to be done.

Be encouraged and positive.

Don't let it win. It isn't who you are, you are still you - the strong man of the earth

By farmwife On 2009.11.07 18:26
Thank you everyone. I will try to take one day at a time and read other posts. God's blessing to each one of you on your journey with PD.


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