PSP

[Cindyross]

I have been recently diagnosed with Parkinsonisms and psp I was wondering if anyone else was diagnosed with this and if they have tried anything that seems to work for them

[Binnsey]

Hallo Cindyross.My husband was diagnosed with PD in 2005 and was treated by the NHS under their normal protocol for 14 years. It worked really well to start with but the on/off times became very apparent toward the end of that time and of course there are always the long term side effects of taking any pharmaceuticals.

We tried an American protocol using Mucuna Pruriens Seed Extract Powder 40% l-dopa.

Mucuna is a natural plant and although the 1st 3 weeks were awful as he had to stop the NHS treatment completely and wait for the new stuff to kick in, it is really good now. No tremors and very little freezing which were the two big things for him.

If I were diagnosed with PD I would definitely try it before I started any standard treatment protocol.

He started on 7.2 grms per day and took it in equal amounts in a little coconut milk every 2-3 hrs.

The dose was upped by 2.4 grms every week until the right dose was found. Too much can give the same results as not enough. If we found it was too much we reverted to the amount the week before and after a week upped it by 1gm per day... it then becomes about playing around to find the sweet spot.

A mix of essential amino acids and b vits were added to the mix.

Good luck on your journey and whatever protocol you decide to follow.

Kindest Regards

Lynne

[1LittleWillow in reply to Binnsey]

Hi, Lynne. Do you use the Barlowe's 40% Indian Brown mucuna, or some other brand?

[Binnsey in reply to 1LittleWillow]

HalloI use a brand from the USA called Prescribed For Life and order it through a company called fruugo. It is a very fine white powder with very little taste.

[1LittleWillow in reply to Binnsey]

Thanks. 😊

[GymBag in reply to 1LittleWillow]

Funny thing, I was diagnosed with it also, about 23 years ago. I went to a Neurologist and I took the medication he prescribed and exercised a lot. It slowly got worse but it was a good life. You will adapt. Keep yourself busy and happy and remove stress oh and try not to worry, it is stressful which makes the PD worse.

Millions of us are just like you. Well not exactly like you because people experience PD in many different forms.

Be happy, plan and make changes as necessary.

You can do this

[Despe]

Cindy,

PSP is a form of Parkisonism, but PD medication is not as effective. Symptoms are slightly different than those of PD. Search HU for their PSP forum.

[Cindyross in reply to Despe]

How do I change from Parkinson’s to PSP

[Despe in reply to Cindyross]

healthunlocked.com/search/p...

This is the link.

[sharoncrayn]

PSP is pretty rare vs PD

PSP and PD are very different conditions with very different outcomes. if you actually have PSP, PD protocols will have no impact.

Overly simplistic; take the sinemet "challenge". not perfect, but a start. Sinemet should have some identifiable, positive impact. If not, likely you don't have PD.

Test for the MAPT gene. Relevant to PSP, etc.

If you have a serious concern about PD, get a Dat/SPECT scan from an experienced (!) radiologist with PD. Most don't have it.

Canada -- PD centers

McGill Parkinson Program*

University of Western Ontario, London Health Sciences Centre

University of Calgary

University of Alberta*

Pacific Parkinson's Research Centre, University of British Columbia

Toronto Western Hospital Movement Disorders Center*

sharon

[Cindyross in reply to sharoncrayn]

thanks sharon