Newly Diagnosed? (? meaning we're not con... - PSP Association

PSP Association

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Newly Diagnosed? (? meaning we're not convinced of diagnosis at this point)

sarahb01 profile image
15 Replies

My Brother was first diagnosed with PSP, now we are being told it may be CBS instead. Wonder if anyone has had any luck using CBD oil for either of these conditions!! Any response on this matter would be GREATLY APPRECIATED!!!

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sarahb01 profile image
sarahb01
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15 Replies
Christine47 profile image
Christine47

My husband found it helpful for pain applied topically. He did use tinctures and a vape pen also. We have used two kinds -- one derived from C. indica, which is high in CBD and little to no THC. I grew our own, either cooked it in coconut oil or just put it in 90% alcohol. Also, we have used two CBD products derived from Hemp. A friend with CBD used it to help slow her progression, but did not find it useful. If you are in the US I can give you the sites we used. If we are going to try it again, I would go to a specialist. It is not as simple as I thought. There is a 7 part docuseries you can find on the internet called The Sacred Plant. I found it hopeful.

sarahb01 profile image
sarahb01 in reply to Christine47

Yes we are in Ky. Any and all info will be Appreciated!! Thanks!!

sarahb01 profile image
sarahb01 in reply to Christine47

Thanks for this info, most helpful!!

Finoni profile image
Finoni

My husband uses canabis for pain a few different ways. We are in New Hampshire, where it is legal For some medical conditions, so he is able to go to a dispensary where they advise. At night he takes half a dropper of THC tincture sublingually. During the day he may use CBD, though not as effective it is less likely to exacerbate the falling. He also has lozenges which he takes occasionally and patches which he uses rarely. This is along with various other pain meds. Mary's Medicinal is a good website that we used before it was legal in NH, but I think they can only ship non THC products to states where it isn't legal.

It don't think it helps the PSP symptoms though.

sarahb01 profile image
sarahb01 in reply to Finoni

Thank You!!

Trillo profile image
Trillo

I give my husband CBD oil, my husband was diagnosed July 2016 with PSP. he would be lost without this oil. He would be shaking from head to toe. Works for him.

sarahb01 profile image
sarahb01 in reply to Trillo

Thanks for your reply! Wishing you and your husband the Best! May I ask his age?

Finoni profile image
Finoni in reply to sarahb01

He is 71. Diagnosed about 3 years ago, symptoms several years before that - but so many spinal stenosis issues that confused the picture. He is constantly in pain now, and is about ready to be done with his miserable life. I try to focus on the fact that he can still eat and enjoy food. He enjoys visitors, movies, theater and occasionally eating in restaurants. But the constant pain is so debilitating and strong meds to control it just make him sleepy and constipated.

sarahb01 profile image
sarahb01 in reply to Finoni

My Brother is 67, been just a few months since diagnosis. Symptoms were present about 18 months before that!! Hang in there, and I do hope that when the time comes, it's peaceful!!!

Trillo profile image
Trillo in reply to sarahb01

My husband is 64, but as the other lady says he had symptoms for a good 2yrs before, I thought it was something to do with his eyes. Not much help here, but this a great help, at least people on here understand what we all are going through.

sarahb01 profile image
sarahb01 in reply to Trillo

Yes it is a big blessing to at least have communications with others in similar situations!

sarahb01 profile image
sarahb01 in reply to sarahb01

I appreciate your response! My Brother was in a BAD car wreck 50 yrs ago when he was 18 yrs old. He has at times throughout his life been

sarahb01 profile image
sarahb01 in reply to sarahb01

a heavy drinker. His mentality throughout his life has been sketchy to say the least. Not what you would call mental illness, just unusual. I can't help but wonder if either of those two issues could have jumpstarted his current condition.

sarahb01 profile image
sarahb01 in reply to sarahb01

I only really know what I've read concerning these conditions (PSP, CBS). Even the doctors that we've seen so far seem to know very little. That is by far the most frustrating part of it all for me! Blessing to you and your Loved One throughout your ordeal! Thanks Again!!

sarahb01 profile image
sarahb01

My Brother lives alone, but is checked on everyday. Does anyone else's Loved One live alone?

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