Helping Those Who Care for Parkinson's Patients
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| Friday we met with a new Neurologist. Many of you might remember that our Neurologist at Duke was indifferent and totally uninterested in Joe or me. 60 seconds was all the time he had for us every 6 months. I asked our empathetic family doctor to recommend someone who he felt would care about us, and be a competent Neurologist. He recommended Dr. Josevich. She was wonderful. She also told us that she thinks Joe has been misdiagnosed, and that he has Parkinson's Plus which is different and has as poorer prognosis. Because Joe does not respond to the PD meds, she has us on a decreased dose to see what happens. So far - Joe is better than worse. She is wanting us to stop for 3 days and let her know what happens. She thinks that the Carbidopa/Levadopa is not helping Joe at all and that he is resistant to it because of the PD-Plus syndrome. I have read about that syndrome, and he seems to have a lot of those symptoms. I would really like anyone's input about this. The dementia is so bad some days, and so hard to live with, as I know many of you know. And the other day I thought he might have had a stroke because his speech sounded like he was drunk - it was slurred and slow - and he does not drink. Then the next day it was fine.....I am soooo thankful for all of you - I just spent a lot of time reading your posts. You just don't know how much you help me take a reality check!!! I feel "normal" again after I read your posts. The rest of the time I feel like I am losing it.....THANKS for being the best support I could hope for. |
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Have you studied Lewy Body dementia(LBD)? Fluctuations of cognitive ability is a hallmark symptom of LBD. If you google Lewy Body dementia organization there is a lot of reading that you can do, and you can read the forums without joining. I believe my 57 year old husband has Lewy Body dementia. If you want my personal email address let me know. Lorraine. |
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Some Parkinson's plus syndromes include: Dementia with lewy bodies Progressive supranuclear palsy Multiple system atrophy Coriticobasal degeneration Parkinson's disease with amyotrophic lateral sclerosis With Parkinson's Plus syndromes, response to typical Parkinson's disease medications is usually poor, short lasting or absent. Pathological abnormalities seen on autopsy also differentiate Parkinson's plus syndrome from Parkinson's disease. Lewy bodies are also present with Parkinson's disease. Take care, best of luck and hang in there. |
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Wow, that is a blow. But, I have read that there is a "honeymoon" period when a person gets off PD meds, they feel better (for awhile). There are some PDers who actually take a scheduled drug honeymoon so their system gets a break, but it's hard getting back to the point you were at pre-honeymoon. Plus it can be dangerous, titrating off meds. I guess the point is that being better off the meds for a few days may mean nothing, it could just be the drug holiday. Plus, my husband does not respond particularly well to sinemet himself (we never got that honeymoon I read so much about) and I specifically asked our neuro about PD plus syndromes because I was worried about that as well. He immediately acknowledged that my husband's response to sinemet was less than ideal, but said he did not have any PD plus. I even named them for him, which made him mad!, but he still kept shaking his head. I don't think I would think about this too much. It won't change anything, and will make you crazy with grief, worry, and sadness. Just be prepared for what can happen, we all know about that because of this wonderful forum, and be grateful for the good days you together. |
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Thank you all so much for you insights and suggestions. I didn't know about the "honeymoon" effect. I will look for that and not get my hopes up if I see it happening.......those kinds of things happen all the time where Joe will have a "good" day or couple of days where he is so coherant and then it is followed by days when he makes weird decisions, does not realize the consequences for any of his actions or inactions, on and on - which I know all of you know. P.S. I received a treat tonight. I just drove home in beautiful snow falling. We are supposed to receive about 8-12 inches here in North Carolina. A rare thing. I felt so at peace sitting in my car before I went inside - just watching it snow those wonderous large fluffy flakes. I am thankful for so many things - all of you being high on the list daily - and the silence of falling snow at 12:30am is one of them. |
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The coeherent days are a treasure. Before my husband died he would occasionally have one of those and it was like I had him back for a brief time. I never was able to figure out why he would have one. Like you, I looked at what he ate the days before, his meds but never could find a common thread. Just enjoy them when they happen. I also found enjoyment in little things that might have been taken for granted before - like you and the snow. Going to the grocery and being around "normal" people was a treat. You will find that this pleasure of life stays with you. Maybe one of the good things that happens as the result of PD. My heart goes out to you because I know what you are experiencing and I know how hard it is to watch your life mate slowly slip away from you. I am so glad that you are here on the forum. I found that it was my life line when things were bad. |
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| My husband was also diagnosed with PD Plus by 3 different neurologists, one was even a PD specialist. That was in the first 4 years after his initial dx. Now, 15 years into this our neurologist(not one of the 3 mentioned above) says my husband cannot have PDPlus. He would be in a alot worse shape by now or dead if it was PDPlus. I think because he has no tremor and has always had a poor response to Sinemet that they "assumed" it was PDPlus. He has gone through alot of meds and they either worked for awhile or not at all. Now he is on Sinemet only, every 2 hours, one regular and one CR, 25/100. It is the maximum dose for him from here on out. Good luck and remember it is all the same in the long run. Meds become less and less effective, patient becomes less and less mobile...no matter what the diagnosis is. And NO ONE knows how long the process will take!!!! God bless you and keep posting, these folks are so good to talk to and they DO understand, unlike a friend or family member. |
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| I read these and other posts and just cannot understand why we are told that Parkinson's is not a fatal disease. I definitely think it is. |
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| The fact that physicians continue to tell people that PD is not a fatal disease is one of my biggest complaints. Everything that kills people with PD is usually a direct result of the disease. The cause of death may be pneumonia or kenal failure but the person got it because they had PD. My other complaint is that physicans fail to tell people that 50 to 60% of PD pts will develop dementia. I think one needs to know this early on so that they can make arrangements and perhaps do things that they postpone. If you are fortunate enough to be in the 40% who doesn't develop PD you probably won't complain! |
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| In Europe they tell people it is fatal. Doctors tell people here in the US that MS is fatal, I don't know why they sugar coat PD. There is a big part of me that thinks MS is easier to handle that PD, from both a patient and caregiver perspective, so I don't know why they do that. |
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MY DAD AS WELL WAS DIAGNOSED WITH PD BUT AFTER SEVERAL NUEROLOGISTS LATER WE FOUND THAT HE SUFFERED FROM PSP (PROGRESSIVE SUPRANUCLEAR PALSY) WHERE PD MEDS WOULD NOT WORK FOR HIS CONDITION.. IT MIMICKS PD SYMPTOMS. THERE IS A FASTER PROGRESSION WITH THIS DISEASE THEN PD. THE SAD PART ABOUT THIS DIAGNOSIS IS THERE IS NO "MAGIC PILL" SO TO SPEAK TO SLOW DOWN THE PROGRESSION OF THIS WRETCHED DISEASE. NOT AS IF THERE IS A "MAGIC PILL" FOR ANY OF THIS UNFORTUNATELY. AS FOR DOCTORS STATING PD OR EVEN PSP IS NOT FATAL.. IT IS BEYOND MY COMPREHENSION.. MY FATHER DIED DUE TO PSP HOWEVER ON HIS DEATH CERTIFICATE THAT IS NOT WHAT WAS WRITTEN.. I ALSO HAVE A POST ON THAT FROM YEARS AGO AS WELL... I FEEL AS IF MORE DR.S WOULD STATE THE CAUSE OF DEATH TO BE PD MAYBE JUST MAYBE THERE WOULD BE MORE INTENSE RESEARCH FOR THIS HORRID DISEASE AND MORE AWARNESS. |
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I do think if physicians would be more frank about PD there might be more research money available. I just am unable to figure out why this is the case. As many of you know I was an oncology nurse and it was entirely the opposite in that field. If a cancer patient got hit by a car the cause of death was still cancer. The actual numbers of deaths resulting from cancer are actually infllated because of this. Look how much research money has been poured into cancer research. Obama is about to launch the second "war on cancer". Nixon tried it but lost that war too. AIDs certainly got high priority in funding and now AIDs pts can live a fairly normal, extended life with the proper meds. I recognize that both cancer and Aids are terrible diseases and I welcome any advances in those fields but PD needs some attention too. My husband's death certificate lists pneumonia as the cause of death and the autopsy report indicates that he "might have had PD". Very strange since we treated him for PD for 17 yrs. On a more personal level I believe that physicans have an obligation to level with people about the disease and the possibilities that may result from it. There is a way to do this without taking away hope. If it was me I know that I would be outraged when it finally dawned on me what was going on. |
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| Annwood, I was also surprised about the 50/60% of patients having dementia in that I was told less than 10% with Parkinson's get dementia. This is an awful disease and we need to be informed so we can make educated decisions as caregivers. Take care, Mary |
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Mary - very few people realize that dementia is this prevelant. My husband and I were quoted 20% but we had to ask. If you research it on the internet you will find it is 50 to 60%. The new study for dementia medication also quotes this statistic. Yet last Fall I gave a talk where the neurologist quoted > than 40%. Afterwards we were talking with two other neurologists and this physician said to one of them that she was glad he had advised her to change the slide from 60% because she didn't think the "audience was prepared to hear that statistic". I was appalled. What gives them the right to hide this from people? These same physicians told me that discussing the problems associated with caregiving only depressed the PD patients. I wonder if we shouldn't copy some of these statistics and present them at the next appointment. Perhaps the physicians would eventually be honest with people. If they know that you know they are somewhat obligated to explain. Physicians often have this god complex that makes them believe they are the guardians of the "secrets". My husband was a wonderful, compassionate physician but we often argued about the internet information and television ads about various drugs and treatments. He felt that this information should only come from the physician. I told him that he had been indoctrinated in medical school when he took "God 101". Specialists - neuros and surgeons - take advanced "god" studies. |