Not CBD after all

[SewBears]

My husband was diagnosed initially with CBD but now the doctors are leaning more towards Lewy-body dementia. Person’s with CBD do not usually respond to treatment. In February we started hubby on Carbadopa-levodopa (Dopamine drug) and he responded very well. He has his gait back! Walks almost normal and is just a little bit off balance. Without the dopamine drug he was in a wheelchair, unable to move his right leg and right arm. He was as stiff as a board and couldn’t bend at the waist. Getting in and out of bed was an issue. I’m very pleased that the dopamine is working!

The next step will be the Exelon patch to see if he’ll respond with better speech and word findings (cognition enhancing drug). We are trying to get preauthorization for this drug through Medicare so we haven’t actually been able to try it yet.

There are more treatments for people with Lewy-body. It’s ranked number 2 on the list, after Alzheimer’s disease. Whereas CBD is much more rare and ranked, like... number 25. I’m hopeful that the patch will do nice things for hubby. We shall see and I’ll update this post in a few months with results.

His diagnosis isn’t set in stone because he doesn’t have any Lewy-body symptoms. The doctor said when we go back in 4 months that he could change his mind again about it being CBD. Interesting isn’t it? The only reason this matters is because it’s how they respond to treatment. If it were strictly CBD he would not respond at all. Anyway, I’m hopeful.

We are going to be involved in a Lewy-body tracking study group that is just getting off of the ground. They want to monitor my husband because he’s not a typical case. We think his disease may have started way back in the early 90’s because of blood pressure issues and fainting spells (Look up Shy-drager syndrome, they don’t call it that anymore). I kind of suspected he’s had something wrong since then. Anyway, when all is said and done his brain will be donated to science as part of the study.

Sending hugs to all of my virtual friends out there.

Xoxo from I SewBears

[doglington]

I'm not sure if it is good news but at least he is getting whatever help is available . I look forward to an update in future. Good luck.

love, Jean x

[Dadshelper]

Dad had CBD and he never had a positive response to Carbo/Levo. Doctor keep upping the dosage to the point hallucinations started. At that time he was taken off it. While dad was with hospice the head nurse's father had Lewy Body. We talked a bit about it and it was the deciding factor in choosing that agency, she had some kind of experience with what dad was going through.

I am glad your husband is benefitting from the meds. Hopefully he'll rebound enough to have some enjoyable years ahead.

Ron

[bazooka111]

Thanks for sharing this - I am wondering if I should have my mom try Carba again — we tried it early early on ... hmmmm

[SewBears in reply to bazooka111]

You might want to talk to her doctor about it? Everyone reacts differently so I don’t know how to advise you. I know that after awhile they will build up a tolerance so I’m going to enjoy this phase for as long as possible. What a dreadful disease!

Xoxo from I SewBears

[Tippyleaf]

Good to hear of the positive response to medication. My hubby who had PSP responded too dopamine though he was never convinced it made a difference - when he stopped the medication he literally seized up.

Wondering if some people with CBD also respond to dopamine??

Whatever your husband’s diagnosis I hope the positive effects of medication will improve both of your lives

Love and hugs Tippy

[SewBears in reply to Tippyleaf]

Hi Tippy,

It’s good to hear from you. Do you remember why your beloved husband stopped the medication? And, after he seized up did he go back on it? I’ve heard that after about 18 months they can build up a tolerance and it might stop working but again, I remind myself that everyone is different.

I hope that you’re doing okay.

Love, I SewBears

[Tippyleaf in reply to SewBears]

Dear SewBears

My hubby decided that the dopamine medication made no difference so stopped taking it -this was when he was managing medication himself and he literally seized up. Once I realised what was going on he restarted the meds and I took over medication management at that point. It took about a month to get back to former mobility!! We never had to increase dopamine medication doses and in the last year weaned the night time dose to try and improve sleep -this didn’t seem to have any detrimental effects.

There seem to be those who respond to dopamine meds and those that don’t - I think worth giving everything a go as you just don’t know what will work

Love Tippy

[georgeg25]

Offering prayers for some positive results for your husband. 🙏🙏🙏

[SewBears]

Update to original post. The Excelon patch for cognitive improvement was denied. Medicare wants us to try the less expensive pill form first. The side effects could possibly be worse than his memory loss and I’m not going to put him through that. I’m going to ask his doctor to appeal Medicare’s decision. I’m frustrated about the hoops we’re forced to jump through for no reason really. Insurance company’s think that they know better than the doctors. Really? And now we wait.

Keep soldering on...

[dollydott]

I'm sorry SewBears how frustrating for you both you sounded so hopeful ☹

I hope the appeal goes through and your hubby gets the chance he so deserves to try the Excelon patch.

Love Lynda 💜

[raincitygirl]

Boy, it takes living with these diseases to actually feel some hope when you hear "maybe LBD"..!

I hope the responsiveness continues!🤞

XX. Anne G

[SewBears]

That makes sense. I remember how quickly things can change. For a long time hubby could handle his medication on his own and then suddenly, out of the blue, he started switching his nighttime meds with his daytime meds. What a nightmare that was! I started paying more attention and eventually stripped him of distribution duties. They just lose one more task that we tend to take for granted until they can no longer function at all. I know what I’m up against and I’m frightened. I don’t know how I know this but I know that I will pull through no matter what happens. What choice do I have? 😢

Note: This is a reply to Tippy’s post but it didn’t post as a reply to her. I must have hit the wrong button.

[AliBee1]

good luck xx Nigel has CBD and the dopamine sent him onto another planet so what you say is true. Big hugs AliBee xx

[Essie23]

What are his symptoms, then and now?

[SewBears in reply to Essie23]

Hi, His symptoms of “then and now” is difficult to answer. No two days are the same and no two people are alike. Everyone experiences different symptoms along their journey.

Probably the best way to understand would be to click on my profile picture. Scroll down to my first post that I made just ten months ago. Then, read some of the more current posts that I’ve submitted. There’s just too many symptoms to list all of them. Fortunately, the good news is that by experimenting with different drugs the improvements are phenomenal.

[rriddle]

Curious that the neurologist would even give an LBD diagnosis if your husband has no LBD symptoms...

Has anyone considered Parkinson's Disease? Or multiple system atrophy (new name from SDS)?

[SewBears in reply to rriddle]

Thank you for your reply and for asking questions. This prompted me to go back over doctor notes. I also looked up MSA again because after awhile they all start to get jumbled up in my head. It’s kind of like shuffling a deck of cards and landing on a diagnosis that covers every symptom. This is a very strange deck of cards!

Our doctor told us that if he’d never met my husband before, never laid eyes on him, and someone handed him his PET scan for review and asked him “what’s wrong with this patient?” He would say “Lewy-body”. So... the clinical symptoms compared to the PET scan, they don’t add up.

The DAT scan is normal per the report “no scintigraphic evidence for presynaptic Parkinsonian syndrome”. Then the doctor notes that I’ve taken says that he has some Parkinson’s features, but he doesn’t have Parkinson’s.

From what I’ve read CBD and MSA are both extremely rare and it’s very likely that neither disease will respond to dopamine. Since my husband’s mobility improved with levodopa, the doctor is treating, or should I say experimenting, with Parkinson’s drugs. I think the last thing the doctor said was that he has Lewy-body that is being presented as CBD.

I really appreciate your question about his diagnosis. It pushes me to research and come to a better understanding. I don’t know if I’ll ever grasp the full ideation of what is happening to my best friend and the love of my life. 💔

[rriddle]

There is no way to use a PET scan to diagnose LBD so not sure how the neurologist can make such a statement.

Perhaps more LBD symptoms will appear later (hallucinations, RBD, fluctuating cognition, dementia) such that an LBD diagnosis can be supported.

Quite a high number of those with MSA do respond to dopaminergic therapy for a period of years. Those with the parkinsonism form of PSP also respond to dopaminergic therapy.

Very glad you'll be donating your husband's brain. Hopefully that's a long time from now.

[SewBears in reply to rriddle]

MSA certainly checks more boxes of his symptoms. Especially the fainting episodes and blood pressure issues. I didn’t go in that direction because what I read on Google is that MSA doesn’t respond to treatment. Maybe the article was outdated or something. Also, his doctor hasn’t mentioned MSA. I will definitely ask about this. His next appointment is 4 months out.

Thank you for this. I REALLY appreciate you and your time to help me with this puzzle. The disease is enough to make a caregiver go crazy.

[SewBears in reply to SewBears]

Add to previous post: The doctor mentioned Shy-drager once but he said they don’t call it that anymore. He said Shy-drager is now known as CBD. I wonder if he meant to say MSA. Interesting...

[rriddle]

Shy Drager Syndrome is now known as multiple system atrophy (MSA).

I'm thinking your husband is seeing a general neurologist, not a movement disorder specialist? A movement disorder specialist would hopefully be up on the literature about levodopa-responsiveness in these disorders.

The best article on autopsy-confirmed PSP and MSA is the O'Sullivan paper. See:

brainsupportnetwork.org/cli...

Relevant excerpt:

"A higher proportion of patients with MSA (62.9%) than PSP (33.7%) showed improvement when levodopa was started, although there was little difference in frequency of sustained levodopa response. These response rates in MSA are similar to previous series with pathological confirmation, which show that between 30% and 70% benefit from levodopa (Wenning et al, 2004). Data on levodopa response in PSP is limited, with response rates of between 30% and 50% described in series without pathological confirmation, of which many show only mild and short-lived improvement (Burn and Warren, 2005). Even if patients with PSP or MSA continue to respond to levodopa, the degree of the response is likely to be modest and insufficient to alter the overall survival."

For me, the key is whether your husband has RBD (REM sleep behavior disorder). If he does, then MSA (or LBD) is more likely. If not, then PSP or CBD is more likely.

[SewBears in reply to rriddle]

He does have RBD but we’re curbing it with the help of Clonazepam. MSA fits much better than LBD. He started fainting way back in the late 90’s.

[SewBears in reply to rriddle]

We went to a movement disorder specialist. He took one look at my husband’s DAT scan and ruled out Parkinson’s. He sent us back to the referring doctor. We’re seeing an MD, board certified neurologist and geriatric neurologist at Cleveland Clinic Lou Ruvo Center for brain health in Las Vegas NV. This is the only clued in doctor that we’ve found. He’s the first doctor and the only doctor who’s even mentioned CBD. The motor specialist that we went to was not helpful at all. The two doctors work closely together in the same building though. I wonder if I should make an appointment to see the motor specialist again, maybe I wrote him off too soon 🤷‍♀️