For those who don’t know me I’m a caregiver for my husband who has been diagnosed with Lewy Body Dementia, not CBD as initially thought. We had an appointment today at Cleveland Clinic and I asked about a possible diagnosis of Multiple Symptom Atrophy. For several reasons that I can’t repeat right now the staff seems to be headstrong about dx of LBD. They are increasing Levodopa for stiffness and after a few weeks they’ll increase Rivastigmine for cognitive issues.
I’m posting this because a beautiful thing happened. Well, it was actually horrible for me. I had a very bad case of food that didn’t agree with me and I spent several hours on the can with a trash bucket for hurling. I’m trying not to be too descriptive here. My husband snapped out of his fog long enough to bring me a glass of water. Then he accompanied our dogs outside before putting them to bed. He was so compassionate and I can’t remember the last time he was attentive to my needs. A role reversal when it was so very much needed. When I was resting he did wake me to ask a question about tomorrow and I just thought that he was adorable. Trying to help but also waking me for literally no reason. You just gotta love em! ❤️
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SewBears
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Oh SewBears, what a beautiful moment for you; made me smile. Proof that the lovely man you once knew is still in there, they all are. Yes, you've just gotta love em - you never stop loving them. Wishing you many more lovely moments, without the can and bucket of course!
What a man, when he knew you needed him he was able to find his way through the fog and help you. It just proves as we say the person is still there just hidden. xxx
It must have taken a lot for him to do those things for you. I'm so glad he was able to show his love that way. Wish it hadn't taken a can and bucket and hope you are feeling much better.
If your husband has cognitive issues (dementia?) such that he's taking Rivastigmine, it is extremely unlikely he has MSA (multiple system atrophy). If he also has hallucinations and/or delusions, it is extremely likely he has LBD. If he has no hallucinations or delusions, it is extremely likely he has Parkinson's Disease. Your husband's autonomic problems can be explained by MSA, LBD, or PD. Same thing with your husband's RBD.
The good news is that many of the symptoms of LBD are quite treatable.
As your husband also has memory problems, he could have Alzheimer's Disease and LBD or PD. (LBD commonly co-occurs with AD.)
Is the same neurologist who diagnosed CBD the one who diagnosed your husband with LBD? (Does your husband see Dr. Ritter by chance? He seems pretty good. He refers quite a few brain donation families our way.)
FYI - there are quite a few good LBD Facebook groups out there.
Hi there, the doctor first dx CBD then the same doctor changed his mind and decided on LBD. Mostly because of the positive reactions to carbidopa/Levadopa. What bothers me about LBD dx is that 80% of people with LBD experience hallucinations and/or delusions. Thank goodness hubby must be in the 20% of not having that symptom. I was leaning toward MSA because of fainting spells early on. According to the little booklet about LBD, passing out is also part of LBD. He has all of the symptoms of LBD except for the hallucinations. Hubby’s DAT scan ruled out Parkinson’s. The booklet says that there are two types of LBD. 1) Dementia with Lewy Bodies; 2) Parkinson’s Disease Dementia. The difference between them lies largely in the timing of cognitive and movement. It’s like what came first, the chicken or the egg? Maybe he has a little bit of everything, who knows? I’m just thrilled that C/L & Rivastigmine are helping.
We haven’t seen Dr. Ritter. Where is he located? We’re seeing Dr. Marwan Sabbagh at the Lou Ruvo Cleveland Clinic in Las Vegas NV. He has signed hubby up for a clinical trial but it won’t start until Jan 2020. We need to qualify to participate and I’m really hoping that he gets to be part of the study. This study will allow us to donate his brain for research and also I really want to know what the heck went wrong with my highly educated beautiful man that I used understand so well.
I hope that I answered your questions. I’m a bit blurry eyed on very little sleep right now.
Thank you. The reason Dr. Sabbagh wants to enroll hubby in the study is because his symptoms are not typical of any of the known dementia’s to date. Is that weird or not weird? I have a horse of a different color I think 🧐
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