Did your neuro do a levadopa trial at any point in diagnosis? Did it always turn out that the l-dopa did not help if it was CBD or PSP? My husband is just starting a one-month trial where he takes increasing doses of levadopa every week for a month, to help determine if he has Parkinson's or CBD or whatever.
The first neuro thought it might be CBD because it was progressing faster than she'd ever seen in Parkinson's, and the current neuro says it might be either, but he seems like he doesn't care about whether it is CBD or PSP--because treatment is the same for these, since they don't respond to levadopa. Is that true??
Lost
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LostinHeadSpace
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Hi Lost, Welcome, glad you have found this space! There are a few people here who live with CBD and can give you and your love personal experience and advice on their battle, probably more relevant than my story!
Yes, my hubby was on levadopa for a while. He started with Sinamet but it made him nauseous and gave him vertigo. Not sure if the steak and beer with it had any effect! It was not repeated.
Then tried Madopar. No real improvement in movement, and it did not improve his quality of life. Gradual increase in dosage seemed to make him very lethargic, and his BP became unstable, although this may have been part of CBD
We had difficulty with hospital doctor in charge of his ward too, who insisted that madopar should be continued because he had Parkinson's, when neurologist (not part of his team) said it was not working (and he had CBD).
Stick to your guns and ask for best care you can get! Get a Physio and movement specialist to give him an exercise programme, and see he does it! Join a gym! Walking is the best and keeps the body moving longer.
Watch your love's progress!
Prior to a diagnosis, my love was just 'getting older and slowing down'. He had heart problems, diabetes, psoriasis, and weapy eyes. In the final 6 months it was very obvious to me that progress had escalated.
Watch your love for little changes in ability or mental function or speech or swallowing. This helped me keep on top of asking and getting aids he needed as it could be a month after request that they arrived. In each case, my husband said he did not need that care, but I sensed he would by the time they arrived. I was usually right.
I understand there are 2 types of CBD, one much slower than this. So far, I have not seen another with as dramatic progress as my love had.
I hope you are able to talk about this awful illness with your love. Discuss will, POA, end of life care if you can.
As the brain gets more 'woolly' your love will find he is unable to think it through and make decisions.
I found all the answers to my questions here when I was frightened of what I was seeing. I hope we can help you in the same way!
Dad has CBD and went down that path of meds because at first it was thought he had Parkinson's. Another neurologist who made the CBD diagnosis wanted to try a booster drug, forgot the name, to see if it would help. It did not, his meds were slowly increased until mild hallucinations start then he was weaned off all Parkinson's meds as they were doing no good.
Our neuro did exactly that. We did the increasing levodopa trial to see if it made any difference to the unsteadiness and the falling backward. After 2 weeks Ch thought that it made him worse not better and so he was taken off the levodopa (by reducing it). Although later he wished that he had completed the whole 4 weeks first. Either way he was then diagnosed with PSP. This was 12 months ago. He is now walking with a wheelie walker. coughing a bit during eating, sleeping a lot more during the day and of course falling -usually backwards - approximately 6 times each week. The best thing we have found recently is hydotherapy and we have started walking 1km 3 or 4 times a week. He has other exercises from the physio and from the speech pathologist. As much exercise as your husband can be bothered with will help a PSP person but I am not sure about CBD... Ch is 75 today he and I keep active in the garden when we can. You will need patience and keeping calm as your loved one goes through this. Good luck .. Val
I'm *trying* to work on the exercise piece. He agrees in theory. . . .
My husband first neurologist put him on all the Parkinson meds for one year and nothing help and his third neurologists did the same thing and it did not help or improve his symptoms as they got worse,after one year he was diagnosed with psp and was weaned of all meds.
Thank you. I will bookmark it. At this point, we were only thinking diagnosis, and not treatment yet. But his condition has gotten so much worse in less than 8 weeks from first noticing it, so we might be rushing on as soon as this trial is up.
Sometimes it works some times it doesn’t. Didn’t do anything for Larry. He takes nothing now.
My love was diagnosed with Parkinson's so was put on levadopa. That is the treatment!
There was no obvious improvement so I asked for neurology referral as he had not seen one up till then.
Only the lovely neurologist researching CBD and similar brain diseases gave me a plausible alternative of CBS. However the ward doctor continued to treat my love with levadopa. I was able to talk about this with my love and he decided to refuse to take the med!
We never got a clear diagnosis for his CBD since it can only be confirmed by brain biopsy post mortem. This means that arrangement for brain harvesting must be done prior to death so that this is done properly.
I was prescribed Sinamet when I was first diagnosed with CBD but I read all the possible side effects and decided not to take it. My neurologyst did lots of tests and showed me the MRI scan and said he was sure I had CBD........... confirmed later by a movement specialist.
So yours did show up in the MRI? My husband's MRI report said only that it didn't show anything (!). We see the neuro again the end of next week, half way through the Levodopa trial. I'm trying to gather the right questions to bombard him with!
Because of a 34 week wait to see a neurologist I spent £220 and the wait was only 2 weeks privately.
He spent a long time studying the MRI scan and showed me the difference in my left and right sides of the brain.
He was a very senior man and worked in the NHS but freelanced some evenings. I would think that his experience with this rare disease helped.
With no drugs available your lack of a positive CBD diagnosis is not an immediate problem and as others have reported on this site it has sometimes involved a lot of work over a few years of visits before it is given.
My husband was diagnosed with PD in late 2016 (although looking back he had symptoms 2-3 years prior). He started carbidopa-levodopa in late 2016 with dose slowly titrated, but about three months into treatment with it, he began to develop episodic periods of shortness of breath that were quite distressing to him (and me). Neurologist was baffled and said that was not a usual side effect, but I had read about a "respiratory dyskinesia" that can occur with the use of this medication. Anyway, he was worked up by a cardiologist and pulmonologist to determine an etiology for the shortness of breath, to no avail. He was subsequently seen by a movement disorder specialist in May 2017 and diagnosed with probable PSP. We ended up weaning off carbidopa-levodopa, but I do think it did help "some" with the stiffness as that seemed to get a bit worse after stopping the it, BUT the shortness of breath resolved COMPLETELY.
Everyone is different and from what I've read and been told, some do get benefit, at least for a while, so it is probably worth a try.
No luck with Levadopa for my sis. She took it for a few months and all that happened was that her voice became very strange.... She has PSP. Sending hugs and glad you found this group where you will find oodles of support and answers for so many questions,
My husband also started with carbidopa/levodopa to see if it would help. They increased the dose . He was diagnosed with PSP and dose changed at Mayo Clinic. Doctor there said we should stop if it did not help. I mentioned that it may be helping slightly with rigidity and they said that may be possible. Now I question whether to stop it it not.
I'm glad your husband is starting a trial of levodopa/carbidopa. It is worthwhile to know if it can help.
In a major study of autopsy-confirmed PSP, levodopa/carbidopa helped some for a short period of time.
There has been no similar study in CBD, but, anecdotally, on the CBD-related Yahoo!Group, we have seen some over the years who get a small benefit from levodopa/carbidopa.
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She has PSP. Sending hugs and glad you found this group where you will find oodles of support and answers for so many questions,
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