hello,
My mom has not been diagnosed officially yet. Her doctor said it might be psp mixing with ftd. Her cognitive deficits can easily be recognized. Levodopa treatment started with half dose (62,5 mg). I did not see much improvement. However, when ee switch to 125 mg, her mood is disrupted. Her voice changes, as if she is crying while talking.
Anyone has the similar experience?
Hi there, I'm so sorry you are in this situation with your Mom. PSP is a difficult condition and FTD is no joke either. Many/most doctors would start PSP patients on some form of levodopa, sometimes as part of a differential diagnosis. It may take a while (a week or more) to see any effect - good or bad. I assume you've read the potential side effects and I believe mood/ depression can be a side effect of levodopa. Similar mood swings or depression can also be a symptom of PSP and so could "pseudo bulbar affect" where someone laughs or cries without actually feeling the corresponding emotions. The voice can/will definitely change in PSP so it might not be linked to the medication at all.
If after a little more time there is no indication that levodopa helps, it would be stepped down again quite quickly and there should be no lasting effects. Some patients experience better results on a second attempt later, but around 2/3 of PSP patients see no positive effects from levodopa and for those who do, the effect might be vague and short lasting. That said, I've heard at least one person (on this forum) continue to experience a benefit after 7 or 8 years.
My husband was diagnosed with PSP June 2021 and started on co-careldopa (Sinemet) on the same day. As the dose was increased, we saw an "almost magic" effect where speech and movement would become fluid for 4 hours, until the next dose was due. 3 years later we have reduced the dose and might soon stop altogether, but meanwhile it has helped my husband.
Unfortunately most medication is a bit of "try it and see" with PSP - it brings home the meaning of "no effective treatment or cure" 😢.
Hope and hugs for you and your Mom 🤗🌻
Dear Bergenser,
Thank you very much for your detailed answer, very appreciated. Once we stop giving her the medicine, or giving in half dose, we do not see her in a crying mood. As you said, i think we will find the right balance by trying. While having the huge pressure and sadness, your message made me felt better and cared. All the best,
Brother was prescribed with maximum dose recommended by Neuro Consultant. He has been it for just over a year and has made a major difference. Previously he was very stiff and badly confused but undoubtedly medication has helped. I am not sure how long the improvement lasts but so far so good 🤞. Maybe someone else on this group can advise how long improvement lasts before signs of deterioration as body builds up a resistance to lepodova.
My understanding might be simplistic and flawed, I'm under the impression that
1) Levodopa works in Parkinson's disease, because PD patients are not producing enough dopamine naturally (or breaking it down too quickly) to keep the nerve impulses flowing evenly from the brain. I've heard it compared to the water coming out of a tap. If the pressure gets too low, the water no longer flows evenly, it splurts and drips. By adding levodopa, the flow improves, reducing tremors and hesitation, making speech and movement more fluid.
2) PSP patients may have similar symptoms to Parkinson's disease, but it may be because the dopamine receptors are damaged so the response to dopamine is less effective. Flooding the brain with extra dopamine can improve the "flow", but if the receptors are too damaged, no amount of dopamine can create an even, effective flow of nerve impulses. When this happens, the excess of levodopa/dopamine creates problems instead.
Based on this understanding, the body doesn't develop resistance to levodopa. The brain just becomes too damaged to respond to it.
There are other options once levodopa is ruled out or has become ineffective, so please stay positive xx
Thank you very much for your comprehensive reply which makes a lot of sense. Guess time will tell. To date Lepodova has made a huge difference 🙏
Let me tell you about my daughter who was diagnosed with Parkinson, the PSP. At first she
was on Carbadopa levodopa along with 4 other parkinson meds. One half hour after taking
the meds her whole body was moving. Hands behind head feet above head (in wheelchair)
huffing and puffing for 1 hour and 45 minutes. They changed the dosage mannnnny times over13 years. Never changed. She went thru Hell. After 3 Neurologist saw this they never
said that it was not usual???????? 18 years later (she is turning 44) she is on Baclofen 3 times a day. and her 7th neurologist admitted after reviewing her records starting in 2007 that he has no idea NONE what is wrong with her. She is in a wheelchair, she can see, hear, and understand all that is said to her. She can't move her arms or legs without help. A MRi in
2019 showed that in the 8 years since her last that her brain had shrunk in half.?????
Now that is how she has been living all these years. But she still has her SMILE.
Linda and Garry Bruning, MOM and DAD.
Right side weak with PSP? 
Drooping in left side of face
The trumpets sounded on the other side
Madopar
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