My dad is on a surgery waitlist for DBS here in Canada (probably next year) and we could potentially do FUS in Switzerland... But in the meantime, we have been trying to figure out the best dopamine sources to help him on the daily. Mucuna is much more effective than his Sinemet, which barely works anymore. He is was recently on 1 100/25 Sinemet with 18 grams of mucuna powder. You can imagine that taking this every 2 hours and 45 minutes is a lot on the body, plus creates a loss of appetite for real food.
With Barlowe's (40% extract), in the mix (and less powder) he would experience unbearable sharp pains in his shoulder when his meds wore off.
We tried Dopaboost and its helped him a lot, especially in being able to reduce how much mucuna powder he has to consume. He reduced it by half, I think. (so is taking 1 sinemet, 8grams of mucuna powder amd 2 dopaboost) (i think!)
The Dopaboost has other ingredients in it (pls see attached photo)
QUESTION :
Is taking 2 Dopaboost pills 6 times a day too much? What about 4 Dopaboost 6 times a day?
Im concerned about how much Green tea extract is in there (liver damage?) and if taking too much of the other stuff is inadvisable too...
I know, I just wish his neurologist knew about this stuff...
Thanks for any insight
Thanks!
Looking for people who have phased out Carbidopa/Levodopa in favor of an all-mucuna program
Night time medication
sinemet and mucuna pruriens
Heart racing and Mucuna
Hello pdkid
I am surprised reading "we could potentially do FUS in Switzerland"
I remember your mentioning Dr J saying his fus surgery not working well for freezing of gate pwp. And I know he has reservations for non tremor pwp like your dad (and me).
I know you wanted to contact him again to ask more questions. So is this potential fus further to more information he gave you?
Thank you
Hi Parkie, there is no surgery that helps with freezing of gait. Dr J suggested doing LSVT Physiotherapy and doing psycho-emotional work. He said it was ok to check in in 6 months after this. My hope is that my dad can better manage his freezing of gait. Surgery would still help with his rigidity, dystonia, bradykinesia and dyskinesias... And i think overall with taking less medication, sleep, etc.
He's starting the LSVT BIG next week and whether he gets surgery or not, it will still be really helpful for him, so I'm grateful that Dr J recommended it. It's a 4 times a week for a month intensive.
Hope this helps
update! dr j still didn't think fus was for my dad, so now we are going for dbs here in canada...
Was your father evaluated and accepted for DBS or do you mean you are looking into it?
He has been accepted and is waiting for his turn. His neurologist made the referral at the beginning of the year; then he had is initial meeting with the surgeon(s) in August. They said they would call back in three months with an update... which I guess should be soon. In the meantime, we have been corresponding with someone about their DBS experience, as well as watched Dr. Mischley's "Parkinson's School" class about DBS. So now we are better prepared about what to expect, and what questions to ask the surgeons in the next meeting.
Also, Dopaboost has been a regular part of my dad's regime. So far so good.
I am very happy that your dad finally found something that will help. DBS seems to be very helpful for many members. He's very lucky to have your help to sort this all out. Keep us posted!
Thanks all around!! We are a bit nervous about dbs (and still don't fully understand how fus WOULDNT help him), but are really excited about the prospects of this surgery making his life easier. Have you done any surgeries?
I was accepted for PTT procedure in Switzerland in September. I have my surgery appointement next February. I was rejected for dbs here in Canada because the MDS accompanying the neurosurgeon said I might not have pd but rather MSA.
Whoa, so interesting... glad you are approved for PTT! Did you confirm if its PD or MSA? Where in Canada are you? We are in Toronto.
My report from Dr J says PD, but home MDS says might be MSA-P.
With the extensive testing I got in Switzerland, I believe it's PD.
If it is MSA-P, which is what I have, can you still have FUS?
Based on Dr J's comment, I don't think so.
''As for Parkinson-Plus syndromes, characterized by extensive and
widespread cell losses in the whole brain, there is no explanation yet as
to their cause''
sonimodul.ch/wp-content/upl...
You can ask them, but to me it doesnt't fit into their ''therapeutic-offer'':
sonimodul.ch/our-therapeuti...
However, if I were you, I would be more curious to know if I really have MSA or PD... Maybe you can present your case to Sonimodul? I encourage you to contact them.
Hope it all goes well... 🌸