I got my DH to the neurologist finally and he said that he was misdiagnosed! He looked at the MRI and said there is no sign of any strokes at all. At first I thought that he was going to have the nerve to say that there was nothing wrong with him. Instead he asked more questions of my DH and of me. Based on what we said, he said "this sounds like a different dementia instead of vascular dementia it sounds like he has a dementia that is called Lewy-Body dementia/Alzheimer's." I said that I was familiar with that one and that my dad had died with the same dementia a year ago. So now he has an appt. with the neuro. on the 9th of Aug. to have another MRI and with the change of diagnosis he will be able to look at the MRI with different eyes.
I researched Lewy-Body dementia when I got home with the mayo-clinic website and there it was, everything that my DH is exhibiting! This is a totally different ballpark and a huge one. I am so glad that I finally got him to the neurologist and I am also glad that the neurologist didn't give up on looking. Now, what I would like to have is some feedback on Lewy-Body dementia because my mind set has to change and I am stripping my gears here trying to learn something new all over again. I would appreciate any advice given. Thanks! I know I can count on you!
Hi Deb. This is, maybe, another example of why they call it the "practice" of medicine. You may want to ask the neuro about having a PET scan done..similar to the MRI but sometimes better at identifying dementia. I don't how long ago the last MRI was done but you may not need another one if it was recent....just have a neuro radiologist read it again. Also, many neuro groups, orthos as well, own the imaging equipment thus they are referring to themselves..not to suggest an ethics issue, but it is all about the money.
tom, I didn't even know anything about a PET scan so I will ask him about that for sure. I also agree with you that it is all about money but I hope that this neuro has more on his mind than that. I think he does because he has already called me at home twice for more info. It must be a much worse dementia because the mortality time line is so much different than vascular dementia. Vascular dementia says 8 to 20 years from diagnosis and Lewy-Body dementia timeline says about 8 years from onset.
My husband has Lewy Body Dementia, with quite a lot of Parkinson's symptoms and no clear hallucinations yet. He takes Aricept for cognition and Sinemet to help him move (beware of other Parkinson's medications). The local neurologist prefers for us to see a Movement Disorder Specialist who adjusts the doses of those, as it is a tricky balance. Managing constipation is a big issue. He takes Clonazepam and melatonin for REM sleep behavior disorder. He also takes coconut oil--I don't know if that has helped. I keep his life low stress and so far he has stayed calm.
My husband was diagnosed very early--he was having trouble doing his job as a college professor but could manage daily life ok (just slowly). It is now four years since diagnosis and he can still make his own lunch and go out with friends and participate in conversation. So I'm expecting him to live longer than 8 years from diagnosis.
Thank you pam, for the medication info especially. The neuro is sending me information on a patch( he says it is to control his appetite) He didn't tell me what it is called but I am leary of any medication. All I hear is...it quits working and it gives a lot of terrible side affects(violence wise) I don't know...but I am good at researching things so I will just look it up. My DH can't do much of anything for himself any more but he tries. His parkinson's symptoms are worse and the hallucinations so far have been moderate. So far all he sees is birds and frogs and things like that but my dad was actually seeing people that weren't there.
Deb, when you read about the possible side effects see if you can find the probability of them happening, keeping in mind your husband's sensitivity to drugs. After seeing the warnings on the drug ads on TV I wonder why anyone would take the drugs. Also look into withdrawal issues. One advantage of the excelon patch was that I was able to remove it after 30 minutes of use when we saw that it was creating extreme anxiety in L, and removing it provided quick relief. It is was the pill version she would have had to suffer through it. So ask your doctor if you can remove the patch early if you see problems on the first use.
If it is the Exelon patch (very similar to Aricept), it is worth a try--it actually gives more cognitive improvement, on average, for people with LBD than for people with Alzheimers. If it is the Neupro patch (http://www.nlm.nih.gov/medlineplus/news/fullstory_123679.html) I would be very leery. It tends to increase compulsive behavior. Next time you are in the doctor's office, after they take his blood pressure, ask them to have him stand up and take it again. Blood pressure that drops when the person with Parkinson's or LBD stands up is a possible cause of falls. My husband's doctor saw a drop and took him off the Clonidine he was taking for sleep (it also lowers blood pressure).