A PD type? Postural Instability gait disorder

[Tryguy]

Hello, I am in seven fighting years into PD. My main issues are balance, freezing, bradykinesia and gait. I have essentially no resting tremor, no constipation, etc. with some softness of voice later in the day. I get RLS when the dopamine runs low, but I manage that with a self-directed mucuna’ L-Dopa concoction that thankfully affords me sleep.

I know we all have a different version of this wicked condition, but thought I would check around to find like-diseased folks out there Who can relate and perhaps exchange modalities and info to get past this. I believe we can!

Thanks,

Arlon

Www.thehealingproject.net

[aliciamq]

Sure sounds like PSP - I am not that familiar with Parkinson's as we were rediagnosed with the PSP. My husband still takes sinemet and this week came off the amantadine. He had no resting tremor and the PSP eye issues are beginning to present after a few years. Falling has been our biggest problem - 3 a day!!!! He can manage a fall no matter what precautions are taken!!!!???!!! Good Luck!!

[JANVAN]

Hi Arlon !

First of all , sorry for my English , but I am not a native speaker.

My main symptoms are bradykinesia and stiffness the (more and more the whole) right site. And doubting about my future.......... I also take Mucuna pruriens (from Eifelsan and from an Ayurvedic doc after a month retreat in Kerala, India).

But what seems to me very interesting is the relationship between TMJ and Parkinson (check those persons videos, but stay carefully : Dr. Dwight Jennings, Dr. Brendan Stack, Dr. Demerjian). It's a bit strange, that there is no more research about that, because totally esoteric it is at all. I was one time (still try to go a second time but I don't live in the UK, so difficult.... ) by Dentist Michael White in London or Lindfield, West Sussex.

And than also Dr. Joachim Mutter , a german doctor in Konstanz , who deals a lot with chronic diseases. Unfortunately a very long waiting list , here a global article (finally he had time to write one), about integrative approach about Parkinson (unfortunately in german language).

detoxklinik.de/files/7615/0...

A lot of hopefully greetings

Jan.

[Sleeplessparki]

Hi Arlon, I have been in this battle, like you, for 7 years. My symptoms are recently freezing which is really a pain, distonia, bradykenisia, significant tremor on my right side, can’t sleep, no longer can roll over in bed, speach has been impacted. I sound like I’m complaining but I’m not. I realize many on this site have it much worse than me. I excercise frequently and keep active you around the house which keeps the pain I have in my neck and back at bay. I do get some relief from the many meds I take but the ‘On’ states last about 2 hours. I get about 7 to 8 hours of somewhat relief per day.... so I’m happy with that for now.

I just added a supplement Mannitol along with probiotics which is fairly recent and I’m feeling some early positives from these. I’m going to begin adding more as time goes on. Well that is my story!

I’m still vertical so everything’s good!

Regards Mark

[Bailey_Texas]

All the same for me. I just take a lot of C/L (18 25/100 a day) and 2 reqiup and exercise and my symptoms are controlled 20 hours a day. 12 years and counting.

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[JohnPepper]

Your symptoms seem to be similar to mine. Look at my profile and contact me, maybe I can help you

[ancee]

16 yrs with PD. Have had DBS 4 yrs ago. I take 1 25/100 sine met and 1 50/200 four times a day. (break 25/100 with teeth) If I feel an Off time coming on, I take 1/2 of a 25/100. This keeps me pretty level. The 50/200 is ER, the 25/100 is regular. I also use a Neupro 6 patch for 2 days at a time. My near knows I do this. He feels, like I do, you know your body. (this is a crap shoot at best.