bazooka111 in reply to HilsandR3 years ago

I wonder if I should suggest trying this for Mom to our Neuro? Hmmm - We also had Leavodopa right before diagnosis and it didn’t do anything for Mom. Nothing else has been offered or even suggested to us. 😞

HilsandR in reply to bazooka1113 years ago

Hello Kim

No harm in having the conversation with your mom’s neurologist, especially around managing any new symptoms, just to check out if there is something out there that may make her life easier along with yours. Even a small amount of respite of symptoms is a bonus but I suppose the prescribing doctor always has to weigh up the pros and cons.

Enjoy your day.

Love Hils

X

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bazooka111 in reply to HilsandR3 years ago

Well then, I think I will ask. Xo Kim

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HilsandR in reply to AnnesHusband3 years ago

When Rod was first diagnosed with PSP the neurologist prescribed Levodopa to completely rule out Parkinson’s. If he did in fact have Parkinson’s then Levodopa would be really beneficial. Two days in with taking them I saw him sprint up the stairs like an athlete - his usually slow and stooped gait completely upright. Maybe this was the placebo effect or maybe, just for a moment, the drug fired up the dying embers, but two days later he was back to square one. He stayed on the drug for a couple of weeks just to give it a chance to show some benefits but it was a case of hopes raised only for a big disappointment. Some folks definitely get some relief from certain drugs but sadly it is short term as the disease progresses.

Hils

x

SewBears in reply to HilsandR3 years ago

Leva works great for hubby. He’s been on it for a year now. With this drug we’ve also increased the dosage a lot since he first started taking it. I’m so thankful that it helps! Right away his shuffled gait improved. He had reached the point of not being able to get out of bed due to stiffness. He couldn’t bend at the waist at all. On Levodopa he’s able to walk and move around again. As the drugs buildup in his system and he begins to decline again I feel like I’m living in a horror movie. I know in my heart that I’ve bought him some extra time, but at what cost. When is enough, enough? 😢

❤️ SewBears

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HilsandR in reply to SewBears3 years ago

All the time a drug proves to have benefits and is giving hubby some quality of life then that’s the way to go, I would have done the same, it’s just that Rod didn’t really respond to anything. Your hubby may get good results for a considerable time on the higher dose, I really hope so. We have to live with all these unknowns but the key is to live and get what you can out of each day, it’s the only way.

Love Hils

xx

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SewBears in reply to HilsandR3 years ago

I hear you! I’m so sorry that the meds didn’t help Rod. Sorry, I forgot to say that in my previous post. I guess my hubby has a form of Parkinson’s because dopamine works for him. Yes, I take each day as it comes. Sometimes I have to tackle the day and sometimes I can be worry free. Go with the flow... eh?

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Railfan in reply to SewBears3 years ago

Not to be a downer but he could have the Parkinson's variant of PSP.... PSP-P. I've read that patients with that variant respond better and longer to Levodopa than most PSP patients. I had probably 2-3 weeks of slightly improved standing stability on Levodopa but it reverted back after that. I was on it for 6 months and was up to a dosage high enough to cause hallucinations. They subsided within 48 hours of stopping.

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SewBears in reply to Railfan3 years ago

Not a downer at at all, it’s reality and I appreciate any and all information. Thank you. So far so good regarding hubby NOT experiencing hallucinations. I’m sorry that Levodopa didn’t work better for you.

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Marilyn_cbd12 in reply to SewBears3 years ago

Hi there, SewBears. My husband tried it last year, with no effect at all. Began with small dose but never got to higher dose. He is in an advanced stage of CBD, if indeed, that is his condition.

Marilyn

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SewBears in reply to Marilyn_cbd123 years ago

Right! We never really know what condition it is do we? I often wonder why our doctor stuck with Lewy Body and later added a subtype of Posterior Cortical Atrophy. I’ve read a lot about all of these different brain diseases and after awhile they pretty much all sound the same to me. I guess nothing is set in stone. My goal for next week is to get on with finding out all that I can about brain donation. I know that I’ve brought this up before and I really do want to know. It’s taking the steps to get there that is so difficult.

❤️

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SewBears in reply to JubileeRanch3 years ago

Absolutely! It's made a huge difference in that he can string more than two or three words together again. He watches and understands short YouTube videos and then he can reiterate to me what he's seen. His memory is better because he can update the day of the week on the whiteboard and he remembers the date/time. After a month on the highest dosage he can put his pants, shoes and socks on, but he still needs help with putting on a shirt. Where before, when he was on the medium dosage, he had completely lost the ability to dress at all. So yes, Rivastigmine has improved his and my quality of life.

The problem is that eventually he will build up a tolerance and I dread the day when he regresses. Living in the moment for now. Trying to appreciate what I have while it lasts.

Thanks for asking.

❤️ SewBears