My wife has PSP and there may not be a cur... - PSP Association

PSP Association
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My wife has PSP and there may not be a cure for PSP, but there is a drug that slows the progression

andyniem
andyniem

My Name is Andy and my wife has PSP. We belong to a user group in Phoenix, AZ USA, My wife is a doctor and has a PHD in the aging brain. I mention this as she told her Neurologist that she was going to fight and not go quietly. I'm sorry she wasn't able to find a cure, but there is a drug that will slowdown the progression of PSP. We have put a website up that will answer many questions. We never ask for money, nor do we accept advertising. The website is for information only. I would like to invite you to see what we have learned, and also from being a caregiver for a spouse that has PSP. The website address is:

supportpsp.com

I hope you will not only visit us, but also contact us with whatever you have learned about this disease. As a caregiver for my wife I have walked in your shoes, and understand it's not easy. The only thing I can say is you are not alone, and it makes no difference where you live. I can only offer information...

Andy

26 Replies
oldestnewest

Andy

Welcome to the forum, come and join us talk and share.

Is your wife still with you? You don't make that clear. I'm sorry you are walking, or have walked this road too. Please share more.

Yes, Tasinga, or Nilotinib, was being used in trials. Is it still? I think quite a few folk here may have been in those trials. I think there are newer trials now.

healthunlocked.com/psp/post...

You too are a carer and you too are facing the struggle we face... The folk here are collectively well up to speed. However there is always room for other informed voices such as yours. Sharing on the forum is sharing with many,

Many here keep abreast of the research papers, many here have long experience. I'm sure you will fit in very well. :)

It's great that you have done so much work to put up a website and from the detail I imagine you have worked hard to put the information together. It also tells of the typical long learning road we carers have to travel.

Please come and join us and share your knowledge.

It's a helluva stressful journey. This forum is a warm ans supportive place, welcome.

Kindly

Kevin

Jeff166
Jeff166
in reply to Kevin_1

This drug has been discussed here in the past under the name Nilotinib. I used this site search to find some information about it. Mostly queries about its usefulness.

Kevin_1
Kevin_1
in reply to Jeff166

Yup, I have already edited my post and added a link... Sorry and thanks :)

grafixapn
grafixapn
in reply to Jeff166

The main problem is time. The longer PSP goes untreated, more brain cells die. I only wish that insurance would pay for Tasigna. I'm not sure in the UK is a doctor can prescribe a drug "off label"?

grafixapn
grafixapn
in reply to Jeff166

You are correct about the generic name for Tasigna. When we first ordered the drug, we got the generic; we paid $1000 US For it. When the seller offered us the brand name drug Tasigna, it was for less than we paid for the generic. My wife claims the brand name drug works better. For me paying less was great. To date 5 people with PSP to my knowledge have taken the drug. Each has reported positive results.

My wife is believed to have had PSP now for 15 years. My wife neurologist told me that satisticly my wife should have died by now. This is why he agreed to conduct a study of those willing to purchase the drug on their own, and report the results. The biggest problem is US Cuztoms. Unless you get a Prescription from your doctor, Customs wont-allow the delivery. Last thing, Tasigna is not a cure, it may restore some things depending on how long the condition started, but it has slowed down the progression drasticly. There was a period where ny wife was lossing her ability to speak. It took 6 months, but my wife speaks normal again.

grafixapn
grafixapn
in reply to Kevin_1

Thank you for your kind words. I'm sorry to admit that there are times when I feel overwhelmed. The purpose of my website is to get good information out there. I hope others will find some of what I wrote useful.

Kevin_1
Kevin_1
in reply to grafixapn

Hi Grafix

Yes, we all feel overwhelmed a lot of the time as carers...

I have had a day from hell where I had to keep leaving the room feeling so overwhelmed I had no strength and having to keep repeating to myself what the task was that I needed to do next whilst fighting down tears.

Sodding horrible!

I am not trashing your website. When I got reading it shares so much thought and experience.

I am asking you to share that here. That's all.

My perspective is this and it may be wrong...

A good website is a great thing. A good primer.

However, if you look at the posts on this forum you will see both a huge amount of support and very detailed questions about particular issues. Collectively the many different perspectives give the poster a wide choice of options as well as promoting 'drill down' to the core issue.

Can you share your website and join us too?

You could add the link to your posts as well. :)

As I said before... You have clearly travelled this horrible road and the detail of your site is a testament to that.

With great respect

Kevin

Sorry, I have done a number of edits to my reply as I have struggled a bit with your post. My limitations I'm afraid.

Do take time to read some of the previous posts here. We are a bit different from most forums, a family in fact...Welcome.

:)

Hi, thank you for your share and the depth of information on your SUPPORTPSP.COM.

I lost my 55 year old son to PSP last May 4, 2017.....15 months ago. I mourn still.

I too live in the USA....Los Angeles. Many on this site live in the UK. I would venture to guess the majority of participants, however we have participants who live all over the world. Though PSP is PSP, the two countries (USA and UK) have different health systems and therefore very different paths for getting help.... and the medical economics $$$, are also worlds apart.

When my son was ill I had little time to spend on this site. He was originally DX with Parkinsonism and three years later re-DX with PSP. His insurance has always been with KaiserPermanente. Early on he did have a DatScan, but it wasn't until past three years that it was part of the tool for the PSP DX.

When he first got DX with PD he was working full time as a math teacher with Los Angeles Unified School System (my son was a Renaissance man with many advanced degrees in many areas). He had to go out on disability (counseled) and was covered by CaSTRS. CalSTRS disability provided a monthly check but no health insurance. He then applied to the ACA (Affordable Care Act) because with a pre-exisiting condition he was not eligible for other health insurance. He chose KaiserPermanente both for his familiarity with it and that the medical facilities were not impossible hurdles to reach. At the time he thought he had PD, but to be sure, paid out of pocket for a private consult at UCLA. The #405 freeway is notorious in the USA for the being among the top 10, if not first, of congested freeways and unless one takes surface streets that is the freeway that one takes from the San Fernando Valley to Westwood. UCLA (both my son's and my undergraduate alma mater) told him that they could NOT give him an answer. He then decided to stay with Kaiser and agreed to the Datscan. Three years later, as he got progressively worst, came the PSP DX.

What I like about your site is that it is simple and concise. Much of what I have written to you I have done numerous times on this site. I find this sites strength is also it's weakness. New people come to this site with basic questions that, if not others, I too HAD when I first started. Since this is a help site we all jump in to help the newcomer, and so there is constant repeat of support and information. As you become more familiar with this site you will understand my concern and the dilemma I have raised..

What I like with your offering is that much information (including the rudiments) is in one location. What I wonder though is HOW your website will NOT get lost.... as people continue to contribute.

I will mention that when I first read your post I got a bit confused. You mentioned that your wife was a doctor "and" has a PhD in aging brain. Is she a medical doctor and in addition has a PhD? At KaiserPermanete I came to meet several MDs there who also have PhDs in a variety of areas.

Do you plan to contribute to this site as a caretaker, if not, how will others, as your original post gets lost in the many sharings, find your website? I am curious.

Anyway glad you found us. I will put your website on my "favorites" and that way I can come back to it when there is a need.

Margarita, Los Angeles, CA

A PHD degre is not a medical doctor. Many with this degree do research, but my wife never used her doctored degree as she hoped.

Thank you for your kind words about may website. Basically I'm fustrated that good information isn't getting out.

Sorry to hear about your son.

Kevin_1
Kevin_1
in reply to grafixapn

Hi Grafix

Are you also Andyniem?

Do come and join us.

We are all about information being shared.

If I may, the old way was someone clued up, or not, putting up a website.

The more modern approach is a forum where posts are open to peer review and much more information collectively added. Especially with an international site such as this.

Imagine fixed Vs dynamic.

I do hope you join in here.

Best to you

Kevin

grafixapn
grafixapn
in reply to Kevin_1

Yes. I had some issues signing in.

Kevin_1
Kevin_1
in reply to grafixapn

Health Unlocked is a bit clunky tech wise.

Ugh!

wear1947
wear1947
in reply to Kevin_1

Dear Kevin, that was also my question: Andyniem is the same avatar as grafix-apn?

The website of Andy-niem overcomes our PSP/CBD Health-Unlocked Forum?

Both are complementary.

Elena F

Kevin_1
Kevin_1
in reply to wear1947

Hi Elena

I agree.

grafixapn
grafixapn
in reply to Kevin_1

I'm not sure what more you would have me do. The website was what I came up with, and getting Dr Samanta to do an off beat study using Tasigna with his patients.

Kevin_1
Kevin_1
in reply to grafixapn

Gosh, grafixapn I'm not asking you to do anything.

Just be welcome.

THANNNNNK YOU!! BEST WISHES TO U BOTH!!

grafixapn
grafixapn
in reply to Boyce3600

Thank you.

Hi i am in the uk. Does this also work for CBDP ? Regards Jo

Not sure.

I honestly don't know.

CBD ?

Hi Jo

It's showing some efficacy for all Tau protein illnesses. So yes, that would include CBD, I imagine.

I think phase 2 is currently underway in the States.It seems to be a Parkinson's focussed trial.

scienceofparkinsons.com/201...

There are other trials going on too. If you would like to get onto one in the UK you could either talk to yours neurologist or you could telephone the PSP Association.

Good luck

cameoboy11
cameoboy11
in reply to Kevin_1

Thanks hugely. Will.let you know how i get on. Jo x

Kevin_1
Kevin_1
in reply to cameoboy11

Hi Jo

Good luck and some more!

Warmly

Kevin

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