Non-tremor dominant pwp (also called ... - Parkinson's Movement

Parkinson's Movement

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Non-tremor dominant pwp (also called akinetic rigid), what supplements, meds or therapy helps you?

Parkie-
Parkie-

Hi all,

With my last post, I realised at least 5 people share most of these specific symptoms:

- non-tremor dominant

- not responding to PD meds

- cannot exercise and/or exercise worsen condition

- muscle weakeness

If you have these specific symptoms, please tell us what helps you.

It could be supplements, meds, technology, therapy, etc.

Thank you all

25 Replies
oldestnewest

Thanks Parkie !!

I'm also interested !!

Sometimes I have indeed no benefit of exercises afterwards, just during.

And yes there are a lot of people who doesn't have tremor-dominant.....

Giovi1960
Giovi1960 in reply to JANVAN

I experience the same symptoms/problems. Looking forward to reading more about what may help.

I will follow your thread with much interest...

Hidden
Hidden

Following too. I’m akinetic rigid also. Lots of muscle fatigue and weakness. Progression seems really fast. Carbidopa/levodopa helps but at much higher doses than anyone else I know and after a few months they have to up the dose again because it stops working. I’ve only been diagnosed a year and a half and I take up to 1500mg levodopa a day. I’m beginning to wonder if it’s actually MSA-P and not PD.

Parkie-
Parkie- in reply to Hidden

Hi Michellendak

My progression is really fast also. Do you have dyskinesia due to high dose of Sinemet?

I have been diagnosed only one year and also wonder if I have a wrong diagnosis, and yes, maybe msa .. .

Hidden
Hidden in reply to Parkie-

No that's the weird thing no dyskinesia at all. I do quite well each time they up the dose but only for a little while. I take it every 2 hrs and I'm still off in between doses.

I suffer the same symptons. Please keep me inform

That is Me! Having a rough morning but will respond with my escalating frustration with current progress. And what I know about meds that help & those that did not help at all. Constipation a worry now. Losing abdominal muscles.

Hi all you Akinetic Rigid PWP,

Do any of you think your PD was first triggered by prescribed meds, for example, antidepressants, or any other meds?

Hidden
Hidden in reply to Parkie-

Not for me. I didn't take any prescription meds before. I was pretty healthy. I used to run a lot and in 2013 I ran my 1st (and last though I didn't know that at the time) full marathon. 2 years later I was having trouble walking. By the time I was diagnosed I could barely walk with a cane.

Mercury is an issue >>> most of amalgam fillings who aren't good anymore and start to 'leak' (don't know exakt word).

The doctor and dentist who treat me, are convinced about that, due through the quantity of patients they see after amalgam removing........(sometimes within a day after the removal).

Unfortunately once in the brain, it's not easy to remove it : some keywords : DMPS, chlorella, OSR II, Infrared souna, special MRI of the jaw, alpha-lipon-Acid

After a sudden onset in my case, about two years kind of stabilisation, now getting worse the last weeks....., try to do OSR II, but it's difficult for me to plan, because I am anxious about over-reactions and fall out some days at work (which is now already be difficult).

Other heavy metals reinforce the damage of Hg.......

In the 50ties there was something in Japan >>>

munchybunch
munchybunch in reply to JANVAN

My husband had all his amalgam fillings removed.

I have found regular acupuncture followed by deep tissue massage to be the most helpful for my rigid muscles. The acupuncturist says the rigidity is actually a muscle spasm. Luckily my insurance covers it. I go 2-3 times a week and it helps a lot. Recently she started scalp needle acupuncture which she says will activate stem cells. I definitely feel better after a session for the rest of the day, but within a couple days I need another session. I definitely empathize with those that experience extreme fatigue. That was my problem and I had to retire from teaching.

MSA?

en.m.wikipedia.org/wiki/Mul...

Hidden
Hidden in reply to aspergerian13

multiple system atrophy

MSA-P apparently is a lot like parkinson's

Deep tissue massage on a weekly basis (which is the most I can afford) helps me to cope, but it is only a bandaid approach IMHO.

Hi I suffer with non tremor dominant left side initially. Now it’s both sides really. I find just typing this with my right index finger hard as my fine motor skills are going. I also get regular headaches now which is new. I haven’t had any alcohol in fifteen months. I suffer sleep problems such as daytime tiredness and loss of muscle function. I also feel under pressure when tasked with menial chores such as painting the front room albeit I have committed to doing the whole house by Christmas. I tend to like my own company more and more these days too.

Parkie-
Parkie- in reply to Henry1244

Hi Henry

I am also non tremor dominant, also left side affected, progressing rather quickly, just started on right hand side about 2 wks ago. Was diagnosed aug 2017 at age 55. I also find myself enjoying my own company more and more.

If you, or anyone else reading this post find something, anything, helps you with your non tremor dominant pd, please share with us, as others kindly did above.

I read this study on hypnotherapy for pd which states great improvement on rigidity:

ncbi.nlm.nih.gov/pubmed/234... I took an appointement with a hypnotherapist for January (no avail before). I will post my results afterwards.

I am also looking into endocrinology as I have read that Free T3 thyroid may be linked to non tremor pd. I will post after my October visit with endocrinologist. Here is the study:

ncbi.nlm.nih.gov/pubmed/259... ‘’The decreased free triiodothyronine level was associated with akinetic-rigid motor subtype’’ (free triiodothyronine = Free T3 hormone

Hang in there.

Oceanflow
Oceanflow in reply to Parkie-

I’m also non-tremor dom.I’m 58 dx at 50 with left side first affected. I will follow with interest.

Yes only this week I wrote to our neuro to say the the levadopa makes no difference at all!!

I'm non-tremor dominant. My symptoms gradually worsened over the course of about 15 years. Started with weakness in my right foot when running. By the time I was diagnosed at 38 (7 months ago) I was barely hobbling around with a cane and driving was very difficult. For many years, I knew I wasn't normal as it just seemed like I couldn't get comfortable and stress seemed to affect me more than my peers. As for medication, I'm ok so far taking C/L every 3 hours (400-500mg/day) and 1mg azilect/day. Cardio intensive exercise like running and hard biking can make me worse. Workouts that incorporate strength training seems to be the ticket for me. I ramped up my exercise routine over the past 7 months until at this point I do crossfit 2 times/week, lift weights a couple times per week, mix in Brazilian Jui Jitsu, and sprinkle in the occasional boxing session. So far, this routine has me feeling amazing and moving quite well most of the time. Still, when I need to rest, there's no getting around it....I need to rest. I literally have to do some form of exercise everyday or I start to get really stiff and feel like shit again. I guess it's a blessing a curse.

At times I definitely prefer my own company however, I think for me the expansion of my social circle doing all these activities has been helpful overall.

Reading about the rapid progression of other non-tremor dominant folks has me a little concerned but what can I do? Just keep moving forward and hope better therapies and maybe even a cure comes along.

Parkie-
Parkie- in reply to Limpmaster

Hello Limpmaster. Thank you for your input.

I am also non tremor dominant, right side affected, progressing quickly for last 10 months. It started on left hand side. Diagnosed Oct 2014 at age 53. More and more symptoms progress i find myself enjoying my own company more.

After reading about MSA, it seems a lot like it as well as PD because its progression appears a lot quicker than PD.

If you, or anyone else reading this post find something, anything, helps you with your non tremor dominant PD, please kindly share with us, as others kindly did above.

Parkie-
Parkie- in reply to Panda30

Hello Panda30

Since I wrote this, Kia17 wrote a few interesting posts about what helps her with her akinetic rigid pd. Alot of what she shares I found were the same as me, but also quite a few things don't match. I guess we are all different , even within our subtypes... Anyway, they are good posts, worth searching and reading.

Hi friends, I am also Left sided non tremor dominant,mild symptoms on the Right side.I was diagnosed at 51yrs of age,in 2016,started with Azilect ,half dose then increased to full dose.Azilect only worked for 6 to 8 mths. Currently on sinemet 6 and 1/2 tab per day,at 2, 1.5, 1,5 1,5 100/25mg every 4hrs. I might have progressed since diagnosis,slowly or fast, I'm not sure. I do experience off period pain,and my on time has decreased from 3 hrs to 2.5 hrs. Overall I think exercise helps a lot. I also tend to enjoy my own company more ,nowadays.No thanks to the lockdown due to covid 19.

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