For those who care for someone with Parkinson's disease
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Some things below have been discussed before some haven't, some in not so quite frank language. Some readers might want to skip this one. Freespirit, You cannot separate the symptoms (other than side-effects of medication) from the what else is going on with P.D. Other things can kill us than P.D. we can be struck by lightening, autos, shot, etc, etc. You mentioned pneumonia, this is one of the leading causes of death by Parkinson's Disease. Our throats and swallowing don't work right and we aspirate into our lungs ...pneumonia. Our blood pressure goes bonkers and we fall causing injury sometimes fatal and on and on. Yes Parkinson's disease IS brain damage. Part of our brain dies, the part that manufactures dopamine. Estimating that 60 to 80% of the cells in the substantia nigra (the name of the area that produces dopamine) have died by the time of diagnosis, and this region continues to die off cell by cell throughout the rest of our lives. Which is what Doctors mean when they refer to the progression of the underlying disease. Other regions of our brain try to compensate for this loss and can cause more problems by flooding our brain with other neurotransmitters. The easiest way I can describe this is; Thinking of a fuse box the wires into and out of the box represent the nerves endings (synapses) in the brain and the dopamine is the fuse fitting between the wires. If there is no fuse then the circuit can't complete. Same in our brain no neurotransmitter (dopamine) and our circuit (signal) can't complete or movement is interrupted. So we over time we take more and more dopamine to replace that which isn't there any more. Until we reach a max when too much over stimulates areas causing problems with behavior. Tying into this example other regions trying to compensate with other neurotransmitters is like replacing the fuses with weaker or stronger ones. The result being stimulation too weak to promote fluid movement or stimulation too strong flooding (stimulating) a region causing unwanted results. On the web page "How an iron rod to the skull changed neuroscience forever" in brief here but more is told on the page. September 13, 1848 an accidental explosion drove a iron rod a meter long through the skull of Vermont railway worker Phineas Gage. Gage survived but lingering side-effects provided science its first clues how the brain affects our personality. Gage lived another twelve years but was never the same becoming unreliable, profane and given to inappropriate remarks, as though he lost all inhibitions. Friends remarked he wasn't the same person. All these years later we still don't know that much about the brain. Oh we know which regions seem to cause some actions but still not much. Thankfully we don't use iron rods driven thought the skull or lobotomies or electro-shock therapy to regions of the brain to stimulate activity. We try to balance medicines that stimulate or trick regions into action and inaction to maintain a balance and proper function. You know as humane as that sounded in my head reading it written out it really isn't all that different from the old ways especially when We're the test lab rats they're trying it on. Trying to find what drugs and in how much dose have which effect or our brains and what personality changes go along with it. Last year Parkinson's Disease was finally placed on the list of fatal diseases in the top 15 I believe which hopefully will help in funding and finding a cure. As the disease progresses affecting the autonomic nervous system (the part that controls involuntary action like heart rate, blood pressure, vision, balance, breathing etc, etc.) shutting us down more and more Doctors are placing Parkinson's Disease or complications of Parkinson's Disease as causes of death. I hope I explained the disease in a way easier to understand and a bit of what is going on and why. Take care, best of luck and hang in there ........... We're all in this together, Doc Holliday: What did you ever want? Wyatt Earp: Just to live a normal life. Doc Holliday: There's no normal life, Wyatt, it's just life. Get on with it. |
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Al, very well put, and thank you. One addition. When my husband was overmedicated, I thought if Parkinson's had progressed to his frontal lobes, that FTD (frontal temporal dementia) now explained his behavior even better than Parkinson's. Phineas Gage (the guy with the iron bolt that Al mentioned) - I read the descriptions of how he had changed, and it seemed astonishingly like what was happening to my husband. Braak has shown that Parkinson's does tend to progress through the frontal lobes. See http://emedicine.medscape.com/article/1831191-overview So it all seemed to make sense, and I sadly believed that "Gage wasn't Gage anymore" - that my husband had irrevocably, neurologically changed into someone I didn't much like, and who treated me abominably. BUT - knowing what I know now - a lot of what I attributed to Parkinson's (= the neurons are dead or dying) was actually the medications. One insight came when an old friend visited, who was in a manic episode. His symptoms - the manic phase of bipolar - were very similar to my husband's. My husband is now 12-13 years after diagnosis. He's not stupid, not at all. We hear the word "dementia", and it seems global - that there's severe deterioration/incapacity in all areas. I've gradually learned the terminology - "cognitive impairment" is the lesser, earlier version - and you can have cognitive impairment in some areas while being in quite good shape in others. (So - hint! if you tell the doctor you fear he's showing signs of "dementia" the doctor may say, no dementia - but if you use the terms "cognitive impairment" the doctor may endorse that description. The aim here is to enlist the doctor's help in getting your loved one to give up activities they can no longer safely do. Good luck! I've failed entirely!) Howard Gardner and others have developed a theory of multiple intelligences - that, say, musical ability is not necessarily highly linked to, say, kinesthetic/athletic ability or verbal ability or visio-spacial abilities. Or think of Oliver Sack's descriptions of patients with quite localized neurological lessions that produce quite specific symptoms. So is he a lot worse in some areas? Yes. How does that impact his quality of life? Not much, actually. Well - complicated, again. He's had to give up a sport he loved. He hasn't worked for ~6 years - he's slow, can't multitask, though he can still write well (he was a writer), can enjoy reading, messing with itunes, watching TV, etc. -I'd say his quality of life is pretty good. He has mostly left side symptoms, showing that the right side of his brain is the most impacted. His verbal skills, centered on the left side of his brain, are pretty darn good. I think this is one reason why his doctors underestimate the very real deficits he has in some areas - he "seems fine" if you talk to him. His executive skills - multitasking - are shot, but if he does one thing at a time, he's much better - so he does. It's complicated. I am absolutely not one to underestimate the very real toll Parkinson's can take on our loved one's cognition. But - five years after I ran across information on Frontal Temporal Dementia, became convinced that my husband's frontal lobe was greviously impacted by Parkinson's - I have a much more nuanced view. Is there some impact - certainly. Is his judgment as good as it used to be? No, and that can cause major problems - especially as he thinks it's better than it is, and he's OK to handle areas (finances) he shouldn't be doing at this point. But I'd have to say ~ 75% of the "frontal" problems were from overmedication, and five years on, are actually BETTER than they were back then - even though Parkinson's has inevitably progressed. One of the problems is that if our loved ones can put on a good show for their doctors - and they can! - the doctors may think they are "fine" for activities they shouldn't be doing (eg, driving, manage finances) as well as activities they still can do (eg, live on their own). I'm with Al on this as well - yes, Parkinson's, eventually, kills you - from falls, from pneumonia, etc. But you really can have a good quality of life for a long time, and you're a lot more likely to if the meds are right. And if you have someone watching out for you. Which is part of why I'm so passionate about trying to warn of the impacts of overmedication on family members. As PD progresses, the help/support of those family members is ever more important, and giving that support is harder/more fraught if the family members have lived through years of abuse/dysfunction caused by overmedication. Al, thank you, and please give Tess a pat for me. We're all very glad you are here watching over us, and we're glad Tess is watching out for you. |
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| Thanks for taking the time to respond to this, Al. I appreciate your thoughts. |
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http://www.uctv.tv/shows/MDTV-Parkinsons-Disease-Dementia-13686 In this link, a neurologist from USC is speaking on dementia in PD. There are several discussions he does on PD. According to what he says in this, the problems with executive function (as my husband has), etc, is a manifestation of "dementia" in PD. I've never heard our doc put it that way. I've never read that in my research of PD. He also speaks about differentiating between PD dementia and Alzhiemer's. He states that hallucinations and depression are more common with PD where agitation and apathy are more common with Alzhiemer's. Just throwing this out for info and possible discussion. |
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| This is a good video. The alarming statistic was that 80% of PWP who have had PD over 8 years will have dementia. |
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Yes, parknit, and this is a very distressing symptom!!! My husband is now begining to exhibit cognitive decline, otherwise known as dementia, to the point where I am going to have to look at someone coming in to be with him during the day while I am working. Of all of the problems and terrible symptoms that he has. . . this is the most difficult for me. I can deal with the physical, but now I feel like he is slipping away from me mentally. So hard. |
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On the 80% statistic - yes, but...it's not that 80% of persons who have had PD for 8 years have become demented by year 8 of their disease - it's that 80% of those who have been diagnosed with PD will eventually (perhaps in 20 years) develop dementia. Parkinsons is much more common the older you get - so, eg, you are more likely to be diagnosed with Parkinsons at age 85 than at age 50. If you are diagnosed with Parkinson's at age 85, there's a pretty good chance you won't have the disease for 8 years - because something - heart disease, stroke, or even the impact of Parkinson's - will kill you before you become demented. So while there are several good studies that support the 80% figure, it's not quite as bleak as it sounds. I wish it was easier to focus, support what our loved ones CAN do, vs. what they can't. Kind of "differently abled", not disabled. Though part of the difficulty is sometimes they think they're fine in areas they aren't. |
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There are so many numbers floating around my husbands MDS who is the head of Movement Disorder at Brigham and Women's told us it is about 20 to 30% who will eventually get dementia. Now you say 80% I have heard as low at 14% I would like to know how many PD'ers actually develope dementia. Remembering that Cognitive trouble, slow thinking, trouble finding words that sort of thing are NOT Dementia. |