Trying Sinemet

[Debspottery1]

Amazing how you can get different diagnosis from a new neurologist and start down a new treatment path with optimism. This neurologist is all for Carbidopa Levadopa and CBD and Cannabis. We saw some improvement in stiffness and increases in sleepiness and drooling. Apparently the concept that melanoma is more prevelant in PD related issues is considered a coincidence as studies say that people with melanoma and who take Carbidopa Levadopa don't necessarily get more cancers. We will see. At this point, we decided we needed to control the stiffness for quality of life. Will post as we see changes. Best to all.

[SewBears]

Carbidopa Levodopa made a huge difference for my husband. Prior to C/L he was as stiff as a board, not able to bend in the middle to sit up, or to even get out of bed. The increase in sleepiness wore off after a few weeks. It’s a common side effect until the drug is fully in their system. Hubby’s been on it for about 6 months now (I think). He is starting to fall asleep earlier at night so I’m going to ask his doctor about the 3rd dosage of the day.

Unfortunately C/L doesn’t work for a lot of people. Since my husband responded to it the doctor suspects that my guy doesn’t even have CBD and he’s leaning more towards Lewy Body, but we won’t really know until we have a brain autopsy. He doesn’t have any Lewy Body symptoms except for severe depression, but who wouldn’t be depressed when there is no cure for any of these wretched diseases.

I agree that controlling stiffness is a huge improvement. I feel like we’ve extended his quality of life and we’ve prolonged the inevitable. It’s wonderful that his mobility has improved.

I’m keeping good thoughts for you and your loved one. Yes, I’m very interested in knowing how it goes. Thanks!

❤️ from I SewBears

[Dadshelper]

I am glad it is having a positive effect. Dad, CBD, never showed enough improvement on it to justify the side effects he presented.

Ron

[Retiredrocker]

Hi

With regard to Sinemet, I was diagnosed with CPD just over 5 years ago. I believe it is a definite diagnosis given the number of MRI scans and DAT scan/ My original Consultant put me on Sinemet and I have been on it since now 8 tablets a day. This combined with physio, Tie Chi and excursuses appears to have slowed down the progression of the condition. It may only be me but would suggest you talk to an expert. If you need anymore info from me let me know. All the best

[daddyt]

Sinemet has been a benefit for me. I know that with many PSP sufferers who started on a levocarb regimen but abandoned it because it was felt that it was no longer working. During my most recent visit to MDS, I was told that some of patients who went off the drug had better results the second time is reintroduced. Something for consideration.

Tim

[Karynleitner]

My husband took it for several months. We did not believe it has much benefit and he quit taking it. After a couple week, he experienced severe rigidity in his neck. The doctor suggested we try the sinemet again. It definitely seemed to help the rigidity. Doses etc are different for everyone, but it’s worth a try.

[Debspottery1]

Last visit to Neuro was interesting in that doctor finally agreed with me that PSP was more likely than PD. The Sinemet was briefly discontinued to see if it made a difference, and it did- immediatly- the balance issues returned within 24 hrs. So we went back to 3 doses per day with meals. The eyes are the most obvious of symptoms- big and bulging, tears, and freezing staring. Forward falling, coughing during meals. Sleepiness all day long. I'm still working full time but beginning to see that it isn't safe if someone isn't here to keep an eye out. I feel better when he takes naps because he's safe in bed. When he's in a chair, he can fall forward onto floor. I think we learn from experimenting with when he takes the C/L and in what dose, so I'm glad to still have it.