Atypical Parkinson’s Posture and Gait

[robclem]

Hi, I’m trying to find out if anyone has information about atypical Parkinson’s symptoms.

I was diagnosed 6yrs ago at age 46 and my symptoms are difficulty walking (I lean backwards, my right leg turns in, my right arm flails and my face contorts) also my eyes want to close. These symptoms improve when I take my 12 Rytary and 4 Mirapex daily but when I’m in an OFF state these symptoms return.

Does anyone have experience of these atypical symptoms?

[Hollandaise]

Hi Rob, I think these are symptoms that are not "Parkinsons" , I am not an expert,but since nobody replied to your post (untill now, i am sure that there will be more people who will reply to you) i thought i could give you my humble opinion! We all know that Parkinsons disesase has many faces, but yours is really unique i think.

[Tobe]

Hi Rob,

Two of your complaints sound a little familiar to me. The leaning backwards and the way that your eyes want to close sometimes. I was originally diagnosed with Parkinson's in 2019 but was re-diagnosed a couple of years later as having PSP (progressive supranuclear palsy). My main symptom is a constant light-headedness and a fear of falling but the PSP clincher is the sense that you are going to fall backwards, which I have done a number of times. Also, the closing eyes (which in my case is largely controlled, along with a number of other irritating things, by Amantadine) but the PSP aspect of the eye thing is the fact that it is difficult to open 'em again! This, I have trouble with too. I'm not sure about your other symptoms. Incidentally, I also have a nystagmus which would seem to be part of my balance issues.

Perhaps you might like to research PSP or mention it to your care provider. It's no fun but it is good to know which particular mischief you are battling against. Hope this is of some use.

Anyway, good luck, my friend.

[robclem in reply to Tobe]

thanks Tobe,

I was wondering if I had PSP or CBD but I don’t have most of their key symptoms. My neurologist still thinks it’s PD.

I have recently discovered High Dose Thiamine therapy and have had amazing results within a few days. I still take my regular meds but adding the B1 has helped reduce my OFF times to zero. It’s early days but I’m hopeful!

Thanks

[Tobe in reply to robclem]

Hello Rob,

Yes, I tried the B1 but it seemed to make me a little more twitchy so I backed off. Don't know if it is Parkinson's-specific but I figured that it should be good for me, too. I'll maybe try it again.

[robclem in reply to Tobe]

the B1 also made me twitchy at first but then I lowered my dose and am currently experimenting with different doses. I started using 100ng sublingual every day but an on 50mg sublingual every other day right now.

[Tobe in reply to robclem]

Well, I am inclined to try it again - so many people have said how well it works for them. I will try a low dose for starters.

[JohnPepper]

Have you read my book, 'Reverse Parkinson's Disease'. It has all your answers in it.

[robclem in reply to JohnPepper]

just bought it,

Thanks

[JohnPepper]

The only remedy for any PD symptoms is to do FAST WALKING, every second day, for one hour. I did it, every second morning at 6 am, since 1994 and have been PD symptom-free for many years. Try it! Walk as fast as you can, for one hour, every second day. You will probably find you cannot walk for more than 5 minutes to begin with, but that is fine! Slowly build up by no more than 5 minutes every second week, until you reach one hour. It is the cheapest way to stay fit and healthy, and overcome many health problemsl

When you start you

[robclem in reply to JohnPepper]

thanks John. I’ve started walking for 25 minutes each morning on my treadmill recently. It’s tough because my right leg wants to turn inward resulting in sore muscles. I do however push through it. The odd thing is that if I start running my leg doesn’t turn in.

I’m a big supporter of walking for fitness and weight loss. I was in my best shape the year after my PD diagnosis when I was training for my Kilimanjaro expedition.

[JohnPepper in reply to robclem]

Hi Rob

I don't know the level of your present fitness but, I would not recommend walking as fast as you can for more than 15 minutes. YOU DO NOT WALK EVERY DAT!!! Your muscles need time to recover!!! Walk every SECOND DAY! Only increase your time after every second week! That gives your body the chance to maintain your fitness lev el without overdoing it. The treadmill is not as good as wlking on grass. You don't use your brain as much on th e treadmill. But, you are the boss and yuou cab do as you choose, but what I am telling you brings the best results!!!

Good Luck!

John

[mach262]

Hi Robdem, all I can suggest is that you see a specialist Neurophysiotherapist who can help remediate the postural problems and help engage the right resources to address some of the more severe symptoms. Good luck