Lewy body disease

[slimweiss]

So my hwp had his new neurology appt. with UCSD today and she said she didn't think he has Parkinsons. So they are doing testing - brain MRI, Neuro testing, heart test, Neuro urology appt. etc. My guess is to confirm LBD which has been my fear all along. He was diagnosed in 2019 with "Parkinson's" but with his recent falls, hallucinations, rigidity, lack of mental clarity and motor function (all of which have gotten worse in the last 6 months), his new neurologist suspects something else. I'm heartbroken that it probably is LBD since he exhibits every single symptom and his Rytary meds just aren't working any more.

Does anyone have any input? I'm guessing if you have LBD you probably aren't able to post. I know he's not able but maybe a caregiver can? And what do I do? It's beginning to get to the point where I just can't handle him anymore. We can't afford to put him in a home. I can't believe that this is what we are facing. Life expectancy is 5-7 years from diagnosis. He's on year 4 but we think he might have had it before 2019.

[Juliegrace]

My aunt had LBD. To the best of my recollection, levodopa made it worse. You might want to research that.

[Beanie57]

My PWP neurology increased LD due to increased anxiety and saying she was not 'coping with off periods'. Long story but ended up being sectioned and diagnosed with LBD & end stage Parkinson's , consider nursing home due to falls, delusions and hallucinations. Took 3 consultants for them to agree side effects due to increase in LD. Now home less LD than when all this licked off -no delusions/hallucinations. Question.

[gwendolinej]

My husband was diagnosed with LBD back in 2013. . His main symptom was extreme apathy, not that it was recognised as apathy. He was being treated at the Movement Disorder Clinic at the Royal Melbourne Hospital here in Australia. The beauty of being treated at the clinic was that you are seeing different neurologists, which is great for a disease they know so little about. Madapar didn’t appear to do anything. Finally one of the neurologists suggested trying the Neupro Patch. He’d “seen it work”. Within a few weeks his apathy disappeared, along with other symptoms. The neurologist’s comment “I’ve seen it work, but nothing like this”. It was amazing. He then was rediagnosed with PD.

We are seeing that neurologist privately now. He says that my husband (Alan) doesn’t have the garden variety PD. He doesn’t have a visible tremor, although he does have a resting tremor.

It’s in the 10th year now and it has been a roller coaster ride. In 2019 we tried mannitol, after checking the research after it was mentioned on this site. See my post. It turned our lives around.

I don’t know if any of this is relevant.

Good luck and keep in touch.

Gwendoline

[slimweiss in reply to gwendolinej]

thank you. that gives me hope. He is scheduled to do multiple tests to determine if it's LBD or MSA. He has all the symptoms of LBD. I feel like he is finally with a great group of neurologists so I'm hopeful that we could have a life extending outcome. I just hate to see him suffer. Interesting too that the increase of LD causes the hallucinations. The new Neuro took him off Amantadine which she said was causing it but she said he should continue with the higher does of LD. I will definitely ask about that. I would love for my man to get the Neuro patch. I think it comes out later this year though. Thank you so much for the info.

[gwendolinej in reply to slimweiss]

Alan was taking 1tbs. in coffee (in his case iced coffee). He weighs 78kg. (172lb), if that makes any difference. It only took a few days to work and worked for about 2 1/2 years. Unfortunately mannitol doesn’t seem to work for a lot of people. He only took it with his usual medication, which was the patch (8mg)(which had stopped working), small dose Madapar and a few supplements. I’m afraid I don’t know what they were in detail, probably fish oil, B12, magnesium, D3, folic acid. We are talking 2019.

One very important thing our neurologist said recently was that if there’s a new symptom and you are taking a new medication, it WILL BE the new medication. You need to tell her you want the dose reduced. It’s all trial and error, even for them. Alan has had delirium three times in the last year. It’s horrible. We have to be very careful what new medications he goes on, because some can cause confusion. It seems that if it’s a possible side effect, it’s likely to happen for him, ( I would normally disregard side effects, as they don’t normally happen). We had it happen with a diuretic for his heart, another for his bladder. Both those specialists are in agreement re the meds and delirium.

Are you saying that the Neupro Patch isn’t available in the USA?

Gwendoline

[Quiveringwreck in reply to gwendolinej]

Hi GwendolinwjMy hwp is trying mannitol again this time in conjunction with lactobacillus plantarun. So far nothing has touched his PD. Could you tell me how you use mannitol and if used in conjunction with anything?

Many thanks

[gwendolinej in reply to Quiveringwreck]

Hi there,

See my reply to slimweiss

Gwendoline

[slimweiss in reply to gwendolinej]

Yes. I have the same mannitol question as Quiveringwreck. Right now I give him one tablespoon in his coffee once a day. Not enough?? Thank you!!

[LostinHeadSpace]

Hi slimweiss,

I can relate! My husband also has an atypical Parkinsonism, at first it looked like CBD, and now they’re thinking PSP…but he had the same wild reaction to Amanatadine. The hallucinations were crazy! Luckily they wore off in a week after he was off it.

There’s another forum here, the PSP forum, which has wonderful people dealing with the atypicals. Also…message me for info on a local-ish group!

Sorry you are dealing with this….it’s a lot to process!

-Lost

[slimweiss in reply to LostinHeadSpace]

Hi! Is this messaging you?? I've never sent a private message before. Techy I'm not! If you do have any info on local groups, I would love that. How do I get involved with the PSP forum? I tried finding one for LBD but I don't think I was doing it correctly.

[LostinHeadSpace in reply to slimweiss]

The community on HealthUnlocked is called "PSP Association"--do a search for it. I know that LBD is different, but I'd say the symptoms are closer to PSP than to regular Parkinsons?

[ddmagee1]

I’m so sorry to hear about these problems with your hwp! It’s devastating to deal with this, especially when one is 76 ( I’m 76 also ). My life partner is in heart failure, with metabolic syndrome, and caring can get tough at times! I have been diagnosed with PD and Cerebellar Ataxia, and have had these ailments for a number of years. I just wanted to suggest, and encourage you, to take each stage of this, with one step at a time, and try and not get too overwhelmed. If you could get help, from family or friends, where it gives you a break every so often, that may help! It helps me to have help, with care, once in a while! Wishing you the best!

[slimweiss in reply to ddmagee1]

Thank you so much. All I've done is cry. If I was married to this awful man, it wouldn't be so bad. We've been married almost 51 years and we dated 7 years before getting married. In ALL those years he has never raised his voice to me, called me a bad name, or even said any profanity. He's the most kind and sweet man. I've always told him that he is Christ to our family. This is a very hard blow and we are all grieving. I'm so sorry that you are traveling down this road too. We do have a great support group and I will be looking into care as soon as possible. It's interesting what everyone is saying about too much levodopa. His last Neuro said we needed to up the dose so now he's taking 1764 mg a day!! For three weeks and I think that's when the hallucinations started. His new Neuro didn't seem phased by that. I will be emailing her today!

[Agnes1234]

This might be the time to reach out to an attorney specializing in elder law/estate planning/MediCal (Medicaid) planning. If you truly do not think he will be able to stay at home, then it is best to start finding out how Long Term Services and Supports (LTSS) works in your community. Is this a social worker on the staff of the clinic that could help guide you?

[slimweiss in reply to Agnes1234]

Thank you so much. Yes! I need to start asking about this. We do have a lawyer appt. to update our trust. He has been practicing signing his name. Poor man has lost so many skills. He was a high school art teacher and did amazing work. Not any more. Thank goodness we know where we both are going when it's over!

[convncer]

Look into HDT B-1

[Vynnla]

My PWP has P with LBD, now going on 12 years. The LBD first became noticeable after the first 5-6 years. We found that too much Rytary was causing hallucinations, making the dementia even worse, so we cut the pharma in half (gradually!) and replaced it, as needed, with plant-based mucuna and green tea extract. After 6 months this has proven to be beneficial on multiple fronts; he has improved and is stable. He walks a mile every day, too. His overall daily L-dopa went from 1500mg down to 1000mg.

[gomelgo]

nature always seems to have better answers than our human attempts at duplicating and "improving" on it ...