Current Clinical Trials for PSP, MSA, CBD

[Christine47]

gallery.mailchimp.com/deb9a...

From a CurePSP post from Janet Edmunson, so you wont have to wade through a list

Christine

[easterncedar]

Very interesting! nice to see that so much attention is indeed being paid to researching PSP. Thanks, Christine!

[loustalet]

Excellent info! I have no doubt one day a breakthrough will take place. But it may only have a real impact on those sufferers who will be at the time at the very beginning of the neuronal degradation process.

More than 10 years now that the first symptoms became apparent with my wife. And her condition continues to deteriorate. Slowly but continuously. She continues to take Co-enzyme Q10, methyl form pf vitamin B12 and Astragalus extract. Because she needs to believe in something, I guess.

Did I mention earlier that my brother also suffers from the same PSP disease! But at a "normal" rate of evolution. 4 years since first symptom and already in a worse situation than my wife.

[abirke in reply to loustalet]

How is the self trial going . I think you and your wife were trying out the benefits or not of Nilotab and Salsalate....

I am so sorry you have two relatives with this disease! They have studied many conditions that may induce if you will PSP . The only one that had a remote coincidence with people with PsP is well water. So did you and your brother and wife grow up in the same town? did ya'll have well water? What is the incidence of PSP in the area that you live. It is low here. Infact Bruce's dr. has one other PSP patient...who lives in the south part of our state....we live in the northwest part of the state about 5 hours away.....It would be sort of interesting to see what things your people have in common w each other....besides you and PSP!

And do you feel like your brother and wife showed same symptoms for the first year , do yoou think the supplements of your wife had much to do with her ability to ward of the symptoms?

I wish you luck and rest and Gods peace as you do what you have to do for your family...

AVB

[loustalet in reply to abirke]

Thanks for your reply.

No, my wife and my brother have absolutely nothing in common! My wife is from Lebanon and my family from the north of France. BTW, I remember an article published in the US on the geography of the PSP frequency occurences and they found that the area were my brother and myself were brought-up was exactly at the center of a pic of frequency. No explanation.

We tried Salsalate for several months. It was difficult to get it on this side of the atlantic but we had good friends in the US who manage to get the product for us. Zero impact. So we stopped and decided to wait for the results of the official test.

We never tried the other product that is used to fight a special cancer, I forgot which one. But there were some negative side effects and after the failure of salsalate we thought it was more reasonable to wait.

But we are still prepared to test a new product if it is available and if we see some convincing evidence that there is a possibility of positive action.

I am afraid it will be too late for my brother (already in a very poor condition) and my wife whose symptoms evolve more slowly but with a history of more than 10 years since the first symptom.

[abirke in reply to loustalet]

I must say you are quite the international man from France and Lebanon with friends and in the US and Uk! The world has gotten alot smaller for rest of us with the onslaught of World Wide Web!

At least ya'll tried different products, I'm sorry Salsallate did not seem to work.

It's amazing how slowly your wife is responding to PSP...may I just say praise God to that!

May I ask a few other questions about your wife and brother...You don't have to answer:

Age of onset and diagnosis

Symptoms

Do you feel like the care your brother gets to the care your wife gets may be the difference in symptomatic response?

Do you feel like there's much difference in medical family history!

Is there much age difference in your brother and wife?

Does your brother have other illnesses which may exacerbate his neurological disorder?

Again you don't have to answer.....Curiosity and alot of time gets me to thinking~ I Certainly can't do anything even if there is a pattern! I do hope you are taking care of yourself

AVB

[loustalet in reply to abirke]

Yes, I had a true international career, with education in France and in the US and having worked in France, the UK (3 times!), the US , Russia and the Middle East. All that is over now! I am retired and share my time between France and Lebanon. And taking care of my wife being an important part of my activity.

Regarding your questions about the differences of PSP history between my brother and my wife, my feeling is that there are as many forms of PSP, history and symptoms that you have patients. The exact area of the brain affected by the neurological disease may be slightly different from one person to the other explaining the fact that every sufferer has a specific range of symptoms. And regarding the history, it must depend on the concentration of protein tau and the kinetics of its degradation and generally speaking of all the molecular steps of the mechanism of the disease. Remember one thing. Sufferers have the degenerative process at work many years before the first symptoms can be detected and diagnosed.

In the case of my wife, it has been evolving very slowly since it was first diagnosed. I would be inclined to think that the disease started at least 10 years before I could see the first symptom, micrography, when she was 50. May be much more than that.

The case of my brother is more typical. Diagnosed at 70 and showing already more severe symptoms than my wife.

In any case, should a miraculous treatment be found, it will be a of real benefit to the patients that are at the very beginning of the degenerative process. Reversing the damage, regenerating neurons, is presumably a challenge many times more difficult than just stopping or slowing down the process.

Finding a cure to stop the process would be quite an achievement but then we would need to find a way to identify the disease much earlier, not based on symptoms but based on brain scanners or molecular analysis...

[abirke in reply to loustalet]

Yes I see. B's body is going but his mind is still strong. He has no family history nor did we share in any of the remote coincidences that researchers have found be true in fellow pspers. and yet here we are, We went from walking into the Drs office in '13 to barely being able to walk to the bathroom 4 years later. Other folks are still writing on this site who were diagnosed before B.....I don't know if other neurological diseases present themselves in such a wide array of symptoms(?); speed with which patient contract symptoms...so all I can do is compare the symptoms. I do agree we need to start earlier in the diagnosis process, but why would we if we don't see a problem.....Should we give an annual cursory set of neurological tests starting at age 50 ? Sort of like how we do with our eyes or bowels or prostates well list goes on....that may be a good idea... You may be on to something , loustalet!

Thank you for things to think about . You sound like a learned man...someone who has a deep well of good memories and experiences to balance out the difficulties of the present.

AVB