PSP Progressive Supra Nuclear Play

[Patsylorium]

My husband Ron first diagnosed with PD now changed to PSP. Has anyone had any success with this disease?

[enjoysalud]

Patsylorium, you are on the wrong site if your husband has been DX with PSP. PSP (Progressive Supra Nuclear Palsy) is one of the SIX Prime of life brain diseases (PSP, CBD, MSA, ALS, FTD, CTE). In PSP you have TAU. In PD you have alpha-synuclein in the neurons.

I would encourage you to YouTube Jim Bower of the Mayo Clinic, MAKING A DIAGNOSIS OF PSP, CBD, OR MSA.

The diagnosis your husband FIRST got was probably ParkinSONISM. The problem is that we don't hear the "SONISM". We hear PARKINSON'S. At first they appear to have "similar" symptoms, but are entirely different.

I was the caretaker for my son who at the age of 52 got his first symptoms.....DOUBLE VISION, HEAVY FATIGUE and SLURRED SPEECH. My son died of PSP May 4, 2017. You can read my story of his change of DX titled FROM PARKINSON'S TO PSP. Dudley Moore died of PSP. There is great support on the PSP site.

At the top of this page, where you see My hub, click on it. Three communities will come up. PSP is one. I encourage you under your profile to put in where you are located. If you have started him on the HDthaimine I would continue it.....everything to gain and very little to lose.

Best to you, Margarita, Los Angeles, CA, USA

[Patsylorium in reply to enjoysalud]

Hello Margarita,

I know it is Tau and not alpha-synuclein. Some background - it took maybe 6 years to get any diagnosis at all. I was searching for answers and getting nowhere. Ron changed from the most active man you could ever find to one who lost all motivation, sat in a chair looking into space, very, very slow to do anything, weakness in the left leg, stiffness, and other things. Had all sorts of brain scans and tests etc and nothing came up. Finally July 2015 a neurologist said "I think it is PD". He was started on Madopar and immediate dramatic effects so it was assumed it was PD. However it did not last. Around xmas 2016 and 2017 Ron suddenly got double vision which we corrected with glasses. We did not know about PSP and problems with eyesight and did not think to mention it to the Neurologist. it was only later when he mentioned eye problems that the connection was made. We have since changed neurologist three times -very happy with the one we have now. It is only about 12 months since he was diagnosed with PSP.

In the mean time to go back we have fought PD with every thing we could do. We hosted John Pepper and put on two meetings for him in QLD Australia. We fast walked for a long time but finally Ron was falling constantly and we had to stop that. We imported a Thera Cycle from the USA in November 2017 which he is still using. He is taking Low dose Naltrexone. We have tried Ketogenic diet. We go every week to the Qld University Clinic for physio and help with the balance problems. We still have not given up and continue to look for help. We have only just discovered this site and did not know there was one just for PSP. Maybe the things we have done have helped a little because it is now maybe 9 years from when his symptoms first started and at the moment I feel we are holding our own.. I have not heard of HDthairmine. Will follow up on it.

Thank you for answering and I am so sorry about your son.

Patsylorium ,QLD

Australia

[enjoysalud in reply to Patsylorium]

Hi, I think the EXERCISE you have done has very probably helped Ron.

There is NO proof of the causes of PSP and definitely NOTHING to slow it down. I believe the supplements that are recommended from those with PD can probably help.

I recommend the HIGH DOSE THIAMINE (read Easilly's posts on that). Put in under the search bar HDT. I believe that if things are going to help PSP the earlier in the disease the better to try.

I gather you are in Austrailia......... I hope you start using the PSP's HEALTH UNLOCKED site.

Best to you.............