Hello everyone, my mom was diagnosed with Psp in 2014 and we are deperatley trying to get her to participate in a clinical trual. There is a clinical trial happening right now and she might be eligible. Has anyone had that experience? We are a bot nervous because it is phase 1 of the trial and the meds are still unproven. Any thoughts.
I am so glad i found this group. I think psp is a very cruel and evil illness ..
Welcome to the site. I'm sorry your mom has this week horrible condition. My husband put his name down to help in any research when he was diagnosed in 2010. He has had blood tests and large questionnaire to complete but no drugs trial. He would have been willing to take part in one originally but having experienced side effects with every drug he has been prescribed, I'm quite pleased we haven't been asked. All drugs have to be tested on humans though and I admire all those who take part. It probably won't help them as when the trial comes to an end, it is withdrawn, whatever the outcome, they may have been given a placebo, and it can be a very long time before it is approved ( unless there is a deadly epidemic of something), but folk in the future will benefit. So thanks to all who go for it.
X
hI Bev , and everyone else , just wanted to let you know that we had our second CHC meeting . I was very apprehensive after the previous experience but it went very well .
We were more prepared this time and knew what to expect but we had a particularly lovely lady who chaired the meeting , she was very kind and handled it all with sensitivity . Alongside th social worker and district nurse .
Between them they agreed that we should be eligible for full CHC ..
Of course it doesn't mean we will get it , it still had to two separate committee meetings . At least it's promising and I felt they took everything in . We can only wait and see now , i I will try not to be too dissappointed if we are refused ..
Watch this space .
I cannot remember if I have already posted ,( have had so much going on in my mind ) haven't got to tell you all though lol . A Physio visited John a while ago and turned up this week with a. MASTER NECK COLLAR BRACE .
It's very good , easy to use . Not sure it's going to be suitable for John , he is more advanced .. I do feel though if your head neck is starting to drop it might be helpful ... Worth trying at least .
Johns not at all well his mouth is very sore now , he has been on penicillin and now in mid of two weeks steroids so hoping it will improve once they are finished , he has great difficulty drinking and feeding . With these problems and the bullous penthagoid which he had recently I doubt very much they would. Do a peg ..
Here's hoping/praying cabbage cottage. It's awful your husband has to suffer from the bulbous penthagoid as well as everything else. When the PEG is inserted, as a rule there is no general anaesthetic involved so he may be able to have one if he and you decided to go for it. It is personal choice of course.
I do hope the steroids and penicillin work quickly.
X
I think I would be willing and John said he will . If we can clear this up see then and if get the full nursing .
They don't know him like I do . When they came yesterday he was very mixed up but he cannot. Tolerate conversation. ! they were very good and gentle with him but he had just come round a little . He spoke ok but he cannot keep it up . I believe when he is dozing !!!!!!!! He day dreams about the past . Go through his life . My mum did when she had her stroke , There's nothing else they can do is there .
But the. When you speak to him he is still in that other world , she asked him if he knew where he was and he told them two of his young homes but I believe he was trying to tell them the places he lived was going through them , he also showed the. Wrong opword , .
Glad you are getting in the the peg , so much easier I had awful t rouble getting five small steroids down him and the other ,pill. I did it with some thin ready brek
Touching wood for you that the CHC is sorted out very soon. It should not be this stressful when it is so obvious to all concerned that the funding should be automatic when the sufferer and carer are not able to manage and cope with the trials of life in the more progressed stage of PSP. Big hug. Kate xx
Yes so right Kate , the CHC lady as much as told me that , I think she was surprise I hadn't already had it for him , she quoted something about. ( the Poynton case ) where a woman fought for the funding. Through the courts and had the money b.ack the judge told them that she had been doing the job of nurse and carer .
I told them that the last time . If I was no longer here John would no way be like he is now .. She was so kind and gentle ,and different to the one who came last time .
She had been a district nurse so use to hands on. The right person for the job. X
Whats CHC and Bullous/bulbous penthagoid. At anyrate I pray that your husband has good responses to all things needed.
AVB
tHank you .. CHC is continuing health care , here in the uk under certain circumstances , that's depending. How much nursing care someone needs all your care is free . Or rather is paid through the NHS .
You can google a bullous penthagoid it to do with the immune system . Affects the skin and becomes blistered . Can take a long time to go up to five years
cabbage, I am so sorry John can't catch a break 
Contact PSP Helpline who have direct link to PSP Research Network who will be more than happy to discuss. Details are at website for PSP Association. Regards Simon
One of this US trial is based on Salsalate. I managed to get hold of salsalate since it is commercially available in the US on prescription only.
My wife diagnosed 9 years ago but only recently diagnosed PSP (Before she had Parkinson!!!!!) decided to go ahead and to take it at the doses recommended for the clinical trial.
After nearly 2 months, zero effect. Absolutely nothing. If at all rather negative.
We will stop soon.
Difficult choice to make, trial or not trial, that is the question! One part of your head thinks you will try anything that might help and the other asks, what if it makes things worse? I hope you find the right answer for you and your mom. x
I tried to get my wife in the C2N trial in Dallas, TX, but she didn't qualify as her memory is too far gone. She was dx with PSP in 2010, so she is in the latter stages. They are really looking for candidates who are a few years into the disease and who definitely display the symptoms of PSP. They have to score at least a 17 out of 30 on the mini-mental test (you can find this out on the web). And have to be under a 60 or so on the PSP Rating Scale (also can be found on the web). There are 3 trials currently taking place that all involve an infusion of a drug. Most require the candidate to have had the disease under 5 years. And they also want them to be able to take about 5 steps on their own or with a cane (which is crazy as most PSP patients can't use a cane and need a weighted walker).
Go to CurePSP.org and check out their PEP program which helps patients get into trials. The drug companies actually pay for EVERYTHING, including air fare for 2, lodging, meals, and of course the drug. They also make a donation to CurePSP if they are mentioned as the referral.
As for the Salsalate trial, we tried that on our own for about 3-4 months and saw no results. It's a high dose of a NSAID, like Advil. I tried it myself and it really cramped my stomach, even with food. But my wife never complained about it.
Good luck in finding a trial. I so wish my wife had been eligible. I've requested them to give her a compassionate dose, but they say they're not doing that at this time. How exciting it would have been to have gotten her well and to have helped discover a cure for all of my friends on this chat room.
God bless.
Ketchupman
Good explanation ketchupman. We just finished one trial that lasted about a year at UAB in Birmingham, AL They were doing only PET/ MRI scans to measure the TAU protein for a baseline for others to come with PSP. The nurse told me that there were about 5-7 other states in the US doing the studies with TPI-287 and Bristol Myers Swab. The 2nd study is a 2 year study in-which they will pay up to 1,300.00
I was trying to get my husband in the next study when he was told 3 days ago, by the neurologist, that my husband might have MSA and not PSP. I do not know what is going to happen now.
Yes, they were paying for our expenses. However, we have family up there and only had to pay for the gas to drive there. We pocketed the money they gave us.
Hey MT,
Have you not gotten the MRI's that will be find the right diagnosis MSA vs PSP...Well is MSA treatable or is it just a nasty little Parkinsonian cousin to PSP...I realize it is Multiple System Atrophy, not good but hell,,,is PSP any better......I suppose I'm not consoling you at all, just hope on not making you mad either.....It's just horrible, you put The inability for
TAU do do its job in one part of the brain and you have Alzheimers, in another you have Parkinsons et el.....The brain does not like intruders.. Even if they were residents, the very garbage man who took out intruders////feel free to correct me if im worng
AVB
Thank you for describing your experience with the clinical trial in Dallas, as well as your own attempts with experimenting various medications on your own for your wife. I am trying to help my Mom with various medications as well, and was curious if you had ever encountered zolpidem (Ambien) for PSP?
Have you seen previous postings about zolpidem helping to improve PSP symptoms? --> healthunlocked.com/psp/post...
I inquired about TPI-287 and also C2N at UAB, but they were too pokey at getting back to me. It would have been closer to Louisville, KY, but we still would have had to fly or else had about an 8 hour drive each way. The folks in Dallas were really prompt and got back to me a day after I left a voice mail. And within a couple of weeks, we had the tickets emailed to us and we were on our way. While I glad folks are doing studies that help measure the disease, I have been more into trying to find something that will cure my beloved. I guess that's the selfish part of me. Oh how I want her to be her old self. We just finished watching a movie on DVD called "Still Alice". It's been out for a while. Even though it's about a lady who's fights Alzheimers, I can definitely relate.
What symptoms does your husband display? How long has he had PSP/MSA? Does he have problems with his eyes (ability to move up and down)? That's really the hallmark indicator in my opinion.
Take care.
Is the testing in England.? I would love to take part in a clinical trial the sooner they find a drug that helps if not a cure,the better. Idolatry much like the sound of what I can look forward to
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