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Topic Karolinakitty/PDPlus Go to previous topic Go to next topic Go to higher level

By Cindy Bystricky On 2010.01.18 13:20
Hi, Penny, I have been on the forum for quite a while but lately have only been reading not posting. I just read your post about going to the MDS and about the extensive exam, etc. It sounds EXACTLY like what we went through in Birmingham at UAB. My husband, Al, was diagnosed in Aug. 94 with PD. Three years later,because of atypical symptoms(no tremor) and poor response to meds, our neuro sent us to UAB. We were told EXACTLY what you were told about "muddy" diagnosis of which disease, but definitely PDPlus. So we went home 150 miles, thinking this is it. Probably 12 years ,at the most, wheelchair by the 8th or 9th year(and we are in our 3rd year). Well, another MDS in Mobile also agreed a year later that it was PDPlus. Guess what?? They were wrong! I am not trying to undo your faith in your doctor, just remember, HE was the one who said the diagnosis is "muddy". Just don't be like us and count your chickens before they hatch. Al is still walking, although falling more and more, still eating well, has some dementia, after 16 years. God bless you and I hope your doctor will be in error also.......Cindy

By karolinakitty On 2010.01.18 19:14
Thanx Cindy ... I appreciate your input .... There are so many factors involved in this PD as well as PDplus,so many variables and so many different degrees of symptoms. I take everything with a grain of salt but am excited in a way about this diagnosis. If it turns out later to be different then so be it. As the doc said.... "muddy". With so many other factors involved i can understand why the doc said this. The brain trauma is our biggest pile of dirt, add in the fact he was an alcoholic years ago, adds the water and other variables with his great grandmother possibly having PD, she had tremors of some kind, makes this a muddy mess.
The brain is such an area of the "unknown" as i like to say. I watch a show called Most Evil once in a while. It's about a pschologist who evaluates criminals who have done the worst crimes. Most of the time he goes back into their childhoods, going over the abuse or "things" they went through as children. My PDr and i often joke about this because if his "diagnosis" as he evaluates these people, is even half right, both of us should have been serial killers, or sexual predators.
i think in that respect we can choose what our mind tells us to do, we don't have to follow that "evil" path. That said i believe that each individual with PD or PDplus has a different make up, so therefore they have different symptoms, different degrees of them and the brain calculates all this, puts it out and we have what we have. Just like bi-polar folks are each different in the way they react to meds, it's all chemical.
Now the Requip is working, adding the melatonin has been awesome, and i'm glad for the Aricept coming. At least it might slow down his dementia, that's what has had us most concerned. As time goes we'll see how this all works out. One thing mine keeps saying is "I'm not dead yet" and he has a very positive attitude, so whatever we have PD or PD plus it's about the same.
thanx again ... Penny


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