Non-tremor PD

[Eileen9]

I was diagnosed with PD 10 years ago, I have non-tremor PD and it has progressed very rapidly. I have tremendous difficulty getting around. I can barely walk if you can even call it that, Does anyone else have anything similar?

[park_bear]

What I have is weird. I have motor impairment and trouble getting around in the house. Yet get me me out of the hiking trail and playing on the rocks and I do fine.

If you can take up some kind of physical activity, whatever works – rock steady boxing, ballroom dancing – whatever gets you moving that you can handle.

[JAS9 in reply to park_bear]

That actually isn't so weird and I might have something similar. There's an automatic response to enclosed spaces when in the "flight" mode. It's the same reason some PWP find that they can't enter a new room and get stuck in the doorway. The brain does a sort of 3D mapping when it enters an enclosed space and in some PWP, that process is so broken they get stuck. For me and maybe you, it lets me enter the space but keeps me from walking with confidence and with a normal gate, so I shuffle, feeling as though I'm always about to run into something. But, as you say, let me loose on a road with no traffic, or even a footpath through a meadow, and I'm off!

[park_bear in reply to JAS9]

Yes it is the concern about running into things. I find I am able to counteract that but it takes deliberate intention and attention.

[JAS9 in reply to park_bear]

I know there are tons of exercise videos for PWP but this one is specifically about this. Sorta hard to follow due to all the jargon, but the eye exercise is easy and seems to help. youtu.be/xG5ptOEg92Y(Not working as expected?)

[GBAMIGOD]

Hi, you really need to exercise,if you have not been doing it.Rigorous exercise.PD abhors space and exercise.Just like park bear said,I noticed,during my off periods indoor,I feel the effects of the symptoms more,but when I am outside,I am more mobile.You really need to push yourself.It may be hard doing this alone,get a motivator/physical therapist/personal trainer,or join an exercise group.

[adrienneb in reply to GBAMIGOD]

I generally have found that RSB is the last worthwhile effort in my fight against PD.

[msavsar]

Are you diagnosed as MSA? Because non-tremor PD is usually called MSA.

We have a family member, 61 years old. She was diagnosed with MSA four years ago.

She has no tremor, but stiff muscles and difficulty in moving. Now,

she can not walk without some one helping her. Her blood pressure fluctuates too muc. After eating the breakfast, it goes down to 60/40 and in the afternoon it goes up to 170/110. She has urination problems and uses disposable catheter each time. She is using madopar 5 tablets daily and Amandatine (PK Merz) 2 tablets daily. Her disease progressed very fast in 4 years. She was normal and walking with no signs four years ago, other than hypo-tension. Now, she is almost bed-driven. She can not walk by herself and needs full support by someone else. The medicines have very little effect.

What kind of medication are you taking? I wish you the best and hope you will find a solution to your disease and be able to overcome it; or find an easy way to continue your daily life.

[Parkie- in reply to msavsar]

Msavar,

Non tremor Parkinson's disease is not called MSA...

MSA is multiple system atrophy and is a different diagnosis with a very different outcome.

[park_bear in reply to Parkie-]

Seconded to emphasize that MSA and non-tremor Parkinson's are different. One of the characteristics of MSA is failure of the autonomic postural blood pressure regulation system, with results as described in the comment.

In my own case the high-dose thiamine has reduced the tremor enough so that I am now motor impairment dominant rather than tremor dominant.

[adrienneb in reply to msavsar]

I generally have found tat RSB is the last worthwhile effort in my fight against PD.

[Beanie57]

Have you come across this talk at all. Fascinating and wondering if it could help you think round things to help you.

youtu.be/Gg5M3J_FHXY(Not working as expected?)

[jeanette2372 in reply to Beanie57]

Thank you for sharing that video. How inspiring! 🙂

[guy1947]

I was diagnosed 3 years ago with non tremor pd,how long I've had it is anyone's guess. In 1990 I started having balance problems,the neurologist said that was likely beginning of pd.It's progressing very rapidly,I can barley walk,and losing my strength very rapidly.Very hard to control.

[adrienneb in reply to guy1947]

I generally have found that RSB is the last worthwhile effort in my fight against PD.

[campos1004]

i have MSAP symptoms of PD very little tremor s. i also experiencing noh which. i was told from MSA and pd seems like it’s not working. very upsetting any one out there

I HAVE BEEN TAKING NORTHEA for 4 months maybe you should try . would love to stand and wash some dishes, cook. clean do my mother duties!

[park_bear in reply to campos1004]

A good physician will work with you to mitigate the orthostatic hypotension. I temporarily suffered from autonomic failure as a result of a dopamine agonist. I found that drinking a quart of isotonic saline 1st thing in the morning helped to raise my blood pressure enough to be somewhat functional. Before doing such experiments you should have a good blood pressure cuff to monitor the results of your interventions. Interventions to raise blood pressure should be carried out in the morning only so by the time evening rolls around the effect of those interventions has ceased, so as not to aggravate supine hypertension. I also found that sleeping with my back and head elevated helped to mitigate hypertension exposure of my brain.

Compression garments can also help to mitigate the hypotension.

[GAS-25]

Hi, my mother suffered from non-tremor PD. We found that any exercise including sitting keep fit helped. We also went to singing groups as this helped with voice strength also lifted her spirits as it was something she could do and was very sociable. We also paid privately for a neurological physio who came weekly which helped immensely to keep her walking and also towards the end maintain a good seating position in her wheelchair, which helped with eating etc. Laterly our movement specialist Consultant did suggest that my mum may be suffering from MSA as her deterioration was so rspid, 2 years from diagnosis, but probably suffered for two years prior to that. Trying to do some sort of exercise daily definitely helped. All the very best Gillian

[guy1947]

I have non tremor pd and having the same problems as you,Here.s a pice I got frgm G00GLE Parkinson's disease is the most common neurodegenerative cause of parkinsonism. Other causes include multiple system atrophy, progressive supranuclear palsy and corticobasal degeneration. ... They do not respond as well to dopaminergic treatments and generally have a worse prognosis compared to typical Parkinson's disease.