PSP and HD B1 Thiamine

[Patsylorium]

My husband has PSP Diagnosed about a year ago after originally being diagnosed with PD in 2015. It took about 4 years to get the PD diagnosis. His main symptoms at first were loss of energy and motivation and very, very slow to do anything. Later came stiffness, double vision, weakness in his left leg, balance problems, falling always backwards, coughing ( but not choking yet) speech problems. Probably more that I cannot remember at the moment.

I have never given up on this and keep trying things to help him. We are about to start the HD Vitamin B1 therapy. I did email to Dr Constantini but have had no answer.

I would like to know if anyone else with PSP has tried Vitamin B1 and if is so what successes have they had. I know so many PD people are using it and doing well so thought it was definitely worth a try.

Also it may be of interest that we started using red light therapy a few months ago

I think there was a definite improvement. My husband was doing more things and started to transfer on his own for the first time. We even walked on the beach and he walked on his own. He has not walked like that since we put him in a wheelchair March 12 months ago (because of the falls). Unfortunately he fell 3 months ago and broke his hip. He was in hospital for 8 weeks and has now been home for 4 weeks. Still in pain standing and walking (with a high walker). Although he is in a wheelchair we have always kept him walking mostly on a walker and always with someone with a hand on his back so that he does not fall.

I would love to have any tips on using the HDB1. We have the injections.

Thank you all.

Patsylorium

[Christine47]

We have been following Dr. Costantini's protochol. Our results may be slower than others for several reasons. Unfortunately, it is not by IV. My husband takes 1g orally before and after breakfast. Also, he is in his 7th year since diagnosis, which means there is a lot of catch up needed in his brain. I am only sorry that he did not start this earlier.

[Patsylorium in reply to Christine47]

Hi Christine,

Thank you for replying. My husband would have started with PSP about 8 years ago but of course we did not know what it was then. How long has your husband been on the HDB1 and can you tell me what changes/improvements you have noticed?

Thank you.

Patsylorium

[falcon946]

Dr Constantini has some major health issues he is trying to recover from, but in the meantime you may want to join a Facebook group on High dose thiamine for Parkinson's. They share a lot of information which might be useful. I know you specifically want thiamine HCL and many find it online at Vitacost. Take care

[Northstar1]

My husband was prescribed Thiamine he definitely improved. This is 100g 3 times a day. What is red light therapy and how does it work please x

[Patsylorium in reply to Northstar1]

Red light Therapy is infra red and near infra red lights built into a helmet and used in two 20 minute sessions per day (approximately) Max Burr in Tasmania, Australia started this. it was a news item and we as well as many others started using it. The people in Tassie are all PD people as far as I know and my husband is PSP but we thought it was worth a try. There are apparently no side effects so no harm. After we started using it within a couple of weeks Ron was transferring on his own (had not done this before) he was more motivated and was doing other things around the house (normally does nothing) and what really got us excited was that after being in a wheelchair for about a year (to prevent the falls) he actually walked on his own on the beach on the 11th April this year. I videoed him and you would not have know there was anything wrong with him. After the walk we struggled to get him back to the car he was very tired but he did it. Unfortunately it may have been a double edged sword because two weeks after that he tried something on his own and fell and broke a hip. However after 8 weeks in hospital we started using the red lights straight away again. This time I am not noticing a difference but he can only just stand and only walk with a high walker for a small distance and with help. I can't work out how to copy articles here so if any one can tell me? Otherwise look up the internet using the names I have given you. Also there are many other positive articles about RLT. My son made our helmet (a Cossack Hat) but The Mens Shed in Dorset Tasmania are also making the hats. I think they charge about $300 for them and there is a waiting list.

Hope this helps

[Northstar1 in reply to Patsylorium]

That's great thanks for that x sounds very hopeful

[Cuttercat]

We tried the oral but I think he was too far along so it didn’t help unfortunately.

Cuttercat

[KERRINGTON]

Look for posts from RoyProp. He also has a huge Facebook following on Hdt.

Wonderful, kind , Dr C suffered a severe stroke, and we were told he will be in lengthy rehab.

[Patsylorium in reply to KERRINGTON]

Thank you for that.

[StayAtHomeDaughter]

How do you get the red light therapy? A bed? A hand held device?

I have not heard of the protocol you are mentioning, THANK YOU.

[Patsylorium in reply to StayAtHomeDaughter]

I have just written a length answer to Northstar1 so could you please look that up

[Birdlover415]

Very interested in learning more about the red light therapy and how you use it and what you think the results have been.

[Adamxd in reply to Birdlover415]

interested in that, keep the feed going on pls

[Patsylorium in reply to Adamxd]

I have just written a lengthy reply to Northstar1so could you please look that up.

[Patsylorium in reply to Birdlover415]

I have just written a lengthy article to Northstar1. Could you please look that up.

[cmichie]

I am going start injections but he doing the oral doses but they need to be high and what did you think about light therapy and where did you get it??