DBS Review & Exenatide

[Ianfrizell]

Hi all

This is a link to my vlog about my annual DBS review and exenatide.

youtu.be/mKPHipJ5YDM(Not working as expected?)

Cheers,

Ian

[JANVAN]

Very good Ian !!

Thanks a lot for your courage !!

And nice to have learned a new proverb : " you could me knocked down with a feather" 😊

I was in September last year in London, by a dentist who was a bit supporting the link between TMJ and Parkinson......

He talked also about the study (it was also in the Lancet)....., said it to my neurologist (even Professor), he was skeptical about it, he says when you don't have any signs of diabetes and then give that, you could get "undersugared" (hypoglaecamia) ??

Can you ask to your dokter about that ???

[Ianfrizell in reply to JANVAN]

I will certainly mention this to my doctor, although my neurologist didn't mention anything about it.

[Kia17]

Thank you very much for sharing your video.

[Seamus606]

That's a great result for you ref Exenatide, I plan to request the same from my neuro. Keep us posted, could be good!

Proper job that 😊

[M1tz1]

Thank you, Ian. Glad the visit turned out well after all. Looking forward to your report on Exanatide.

[FMundo]

Ian, check Parkinson's Online there are well over a dozen articles on Exenatide.

[Bridielena]

Ian I have just stopped a course of Exenatide weekly injections. Yes, I had to pay more for it....very ‘dooable’ In my case. My Neurologist prescribed it and now wants me to have a 2 month break.... I don’t know what my symptoms would’ve been had I not had the Exenatide but feel it has helped. I have lowered my daily dose of Madopar and able to now take an ER version for my nightly sleep. I am giddy, light headed and have to watch each step I take but think this is my Low Blood Pressure . It can be very very low.

I have never had the Scale worked out for me and like you nothing had eventuated each visit to my Neurologist. I had seen a report on Exenatide and asked him if I could try. No problem at all.

He wants me to think about DBS or Duodopa. I don’t want either. I’m hoping Exenatide has put me in a better place. Should have a better idea in a month or 2. Only drawback is the amount of weight I have lost is not healthy. I’m very scrawny and look older . It’s an appetite suppressant and works very efficiently in that area.

Bridielena from Queensland Australia

[Ianfrizell in reply to Bridielena]

Thanks for your comment, Bridielena - very encouraging! I'm hoping that I don't suffer with the gastro-intestinal side effects that many have reported. I intend asking my neurologist to score me using the UPDRS before I start exenatide, and then I'll get re-evaluated after 12 months. I don't have much of an appetite to begin with, and I could do with losing a little bit of weight...

[Bridielena in reply to Ianfrizell]

Thank you for replying Ian. I must ask my Neurologist for the UPDRS rating too. I’m 13/14 years on this Highway to Hell but optimistic now as this condition. ...I won’t call it a disease....is on hold....I think.