For those who care for someone with Parkinson's disease
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By LC On 2010.07.08 16:03
I have been reading lots of post on this site. I know that everyone with PD progresses at a different rate, but I was just wondering how long ago some of these individuals were diagnosed. Also wondering if changes were gradual or sudden. Is that something that is individual?

By MJ-Camano On 2010.07.08 18:31
My husband just turned 69, he was officially diagnosed 3 years ago, at that time he had some confusion, stiffness while walking, slept alot, trouble concentrating on a single task, driving within a lane and maintaining a steady speed. I think his problems have been coming on for about 7 years before the diagnosis. He seems to have progressed rapidly - now has withdrawn from most all social activities, prefers to stay home, sleeps about 16 hours a day - exhausts from a small amount of activity, hardly does anything himself - now has a caregiver 3 days a week while I work - helps bath him, wash his clothes, etc. Just this week, I have decided that he cannot be home alone - even for an hour, as he fell and was very confused on how to get himself up. I moniter his medications, food, incontinence problems, do all the driving, household duties, etc. He is very much like a child in an adult body. I remember about 3 years ago, I said he acted like a teenager; now many times I feel he acts like a 3-4 year old. He has been diagnosed with LBD. He has never had shakes - but I think the Exective functioning is probably the first thing we noticed and anxiety problems. So many other things - I could go on and on. But this is the gist of how it has affected my husband and as most people say on this site - everyone is different. We take it one day at a time, and cope with each change as it comes - I wish we had some guidelines for each stage......

By LOHENGR1N On 2010.07.08 19:15
LC, Myself, I was diagnosed in 1986 shortly before my 34th birthday. Progression has been gradual in my case. They say that around 80% of dopamine producing cells of the substantia nigra have died before the symptoms of Parkinson's surface and the disease is diagnosed. So the disease has been going about it's insidious busyness for quite awhile before diagnosis. Which is why when looking back we can recognize symptoms which we just chalked up to aging or other causes. There are general rules of thumb or guidelines as to stages however I don't put much stock in them as they were drawn up before many of the drugs we now have were available. So when looking at the "stages" one could fit into a stage be given a medicine and seemingly regress to earlier stage. This can give a false hope of misdiagnosis or that the new med has cured! Which at the time might seem wonderful until more brain cells die off and the medicine doesn't do the job anymore ripping the rug out from under the patient who thought the drug was a cure. Then both caregiver and patient become depressed and dazed as to what happened.

So in retrospect are the changes gradual or sudden? Is that something that is individual? In the long run I'd say most changes are gradual with (idiopathic) Parkinson's Disease. Considering that when diagnosed 80% of those cells are dead We are functioning on just the 20% remaining and the medicine trying to replace the neurotransmiters now not being produced. Also considering that this 20% becomes less and less as the disease kills off the remaining dopamine producing cells as it progresses. These changes remain individual as progression is different in all and some can't tolerate one medicine while they can another. It's a mess but keep posting and we'll try to clear it up somehow for you. Take care, best of luck and hang in there.

By Michele On 2010.07.08 21:39
My husband's experience with PD had been atypical. he has had a fast progression - five years after his diagnosis at age 60, he was in a wheelchair. He has many non-motor problems and some dementia. My loved one was told the he has an aggressive case of Parkinson's. Based on what I have read and been told by doctors, the "typical" case is diagnosed at age 60 and the course of Parkinson's is controlled by appropriate medication for about 10 years or more. It is true that everyone's experience with PD is different. Even those with a "typical" course of PD will experience different problems. I hope this has been of help to you.

By karolinakitty On 2010.07.09 09:32
LC .... My guy was diagnosed just about 2 years now. He is 53. His progression has been faster then most, from what i have read. He has a PD plus disease called Lewy Body Disease. While we all believe he has had it longer then diagnosis, about 5 years, in the last year plus he has had a drastic progression in the cognitive areas. He walks with a cane, has very little outward tremors, mostly the jerky kind. He has just lost the feeling in his fingers on his right hand, legs swell, walks like he is drunk, very slow in thought and deed. He is on RequipXL and Aricept. Other then the COPD he has no other major health issues, so we are blessed that way. His heart is strong, blood pressure rises and falls as with most, kidneys liver and all that other stuff is good. He still can shower and shave, however, it takes a very long time. When preparing to go out, especially early morning appointments we get up 2 hours early so he can get ready. His dignity is what he hangs on to, so i don't fuss about how long it takes. We just joke with each other about it, I tell him all the time "and they say Women take long to get ready".
We have had no real issues with falls, hallucinations or compulsive behaviors. I guess our biggest issue is the progression of the dementia.

By Emma On 2010.07.09 10:49
My husband has had PD for about 12 years although he wasn't diagnosed until 2002. Like karolinakitty's husband he has Lewy Body Disease. The first symptom I noticed was the dementia, it started before the physical symptoms. He has had delusions and hallucinations from the very start. The first physical symptoms were a shuffling gate and no arm swing. He has never had much of an issue with tremors until recently. Now they are large, sometimes involving his whole body. He has obsessions from the Requip. His progression has been interesting. All along he has had a pattern of staying pretty much in the same place for about two and a half years and then he suddenly takes a big nose dive. Then he stays there for another two and a half years or so, then another nose dive. Recently that pattern has changed. He went downhill last summer, on schedule according to how it's gone in the past, but now he took another big dip this past spring. His cognitive abilities are much worse and his mobility has really deteriorated. At this point I do pretty much everything for him as far as grooming and dressing. He falls a lot and can barely walk even with his walker. Everything is extremely slow, but then he has never been real familiar with the concept of speed so I'm used to it.

By parkinit On 2010.07.10 16:17
My husband was diagnosed around 11 years ago. He was functioning at a high level until about 3 years ago. We had DBS, which helped for about a year, and it seems that the past 6 months, the PD has progressed at a rapid rate - I can see decline in weeks. We quickly went from a walker to a wheelchair in no time at all. I went on vacation to visit family members and could see a decline in the short time I was gone (a bit less than a week). It is a scary time right now for both of us.

By Lotsapies On 2010.07.10 19:03
My 65 year old husband was diagnosed in March of this year. I am 53. He had a pacemaker implanted in December (aschemic heart disease)and about a month later the symptoms came on hot and heavy. He also began having seizures. I work and it is hard to leave him alone some days. Nights are the worst-it is like he is saving all of it for me when I get home. I usually end up having to help him into bed. He has the shuffling, no blinking, tremors, swallowing issues, drooling. He also has COPD, diabetes. He also has glucoma and a hernia. Not sure what to do about those issues. I don't want any surgeries unless absolutely necessary. He also is showing signs of confusion and is obsessed (on his bad days) with his cane! We have the VA but his doctor is 250 miles away. We have a neuro in town but he really is the pits. The hardest part of all of this for me is not having my old husband and getting used to things the way they are now-It is very lonely and I am scared I am going to hurt my husband because of the situations that occur and I dont know if I am doing the right thing. Especially his meds-Its alot to juggle. Sorry for the long post.

By karolinakitty On 2010.07.11 12:19
Lotsapies ... most of us know where you are at ... it is scary and you don't know for sure if you are doing right. I agree on the usrgeries though. Mine has a hernia too and while he wants it fixed knowing what surgery can do, we have elected to let it go. Mine has declined fast too, it's so sad to see the one you love fade so quickly. It actually makes us more determined to do what we want to do then to sit back and let the disease take over. Mine has the philosophy that if he's "dying" already he's going to make the best of it for as long as he can fight it out. He's now starting to be cranky with me but in the "Mr. Cleaver" way. He hasn't a mean bone in his body and his "yelling" is like Beaver's dad used to. "Now Beaver", so when he gets a little rise in his voice or doesn't want me to come out to his shop for a while, i know he is cranky. He's always had a sweet spirit, non-confrontational, but now has that, "don't mess with me" attitude with other folks and will tell people straight out what he is thinking... which can be kinda cool at times... really puts some old friends, or should i say aquaintances at bay..... I'm blessed that i don't work and can be here for him all the time, but sometimes it does get a little boring for me because i was used to working 40+ hours a week and working 2 and 3 jobs to come down to hanging around the house. However i know that soon will pass, and i'll have my hands full so i'm going to enjoy the boredom for now.......
Hang in there with us and vent as much as you can ... it really does help to know there are others out there just like you!!!!!

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