Good morning to all. My wife "Pam", was officially diagnosed with PSP in January 2017. She had a "DAT" scan in Grand Rapids, Mi. She just turned 67, I'm 64. We live in southern Michigan, USA. I took an early retirement in August 2017 to stay home and take care of her. Like everyone here our life has been turned upside down with PSP. I now do everything to maintain our home and daily living, Really, everything. Full time caregiver. One day at a time, thank you "Jesus".
I'm a pipe fitter by trade, more of a nuts and bolts type of guy. I can fix anything but a broken heart. I'm not a nurse, doctor, lawyer, or scholar of any type.
I would encourage everyone to look into alternative treatment. My experience tells me that the medical field really has no help for PSP patients at this time. I have been searching the internet for anything at all that might help. This is what I've found.
"Phoenixtears.ca", it is a website about cannabis treating and curing cancer. I found many "You Tube" videos of testimonials about being cured, and the amazing benefits. Cannabis oil is being used to treat many diseases. Do your own research. The bottom line here is that I started treating my wife with cannabis oil 2 weeks ago. Other family members have noticed her improvement without me bringing it to their attention. Her speech has started to come back. you can actually hear and understand her. Pam and I decided earlier that we would have her walk as long as possible. As opposed to riding on the walker or wheelchair . I've had to hold her tightly and push or force her to take steps. Now her steps have become more fluid and i can just hold her lightly when she walks. She is also feeding herself again. I just wanted to share this with everyone out there struggling with this cruel disease. I don't know if she will continue to improve or not. But we are not giving up. We have been to several Drs and 2 movement disorder clinics. They really don't have anything. Please do your own research and do what you must for your loved one.
May God richly bless you today, Tim
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Hi Tim, I really hope the Cannabis oil is helping. We live about 20 minutes away in SW Michigan, and chose to go to the U of Chicago where they were conducting a clinical study using an Abbvie drug. It did not cure my husband, but it did stop the progression of the disease.
He was 83 and died of aspirating fluids and getting strep pneumonia. I am sure his age was a contributing factor in his death.
For such a rare disease, I am finding an amazing amount of people suffering from it’s awful effects.
Good luck to you and Pam. In the study in order to qualify the patient cannot be taking Cannabis. However, if you are interested you might want to call the neurology department at the U of Chicago.
We checked into a clinical study at U of Chicago. Pam decided not to do it.
We both thought it was going to be too much for her.
Welcome to the site. I hope you have access to physical, speech and occupational therapy. Exercise is about the only treatment for PSP. It’s use it or lose it. Occupational therapy is best done in the home. It show how to assist her doing things around the house.
Pam had some physical therapy a year or so ago. It was literally like torturing her. She has been way too weak to participate in anything like that at present. She is spending 90% of her time in bed resting.
Hi Tim, I've read several posts here on Cannabis Oil and how it has helped some so I will be getting it for my husband and hopefully he will get a positive result. Best wishes Nanny857 x
Just to be clear about what I have been giving Pam. It's not just cbd oil. It is oil extracted from an indica strain of marijuana plant, it has the thc in it as well as other cannabinoids.
I would love to know more about the type of cannibis oil you are using..is it full spectrum or hemp oil....in ireland theres a phobia of using it..ive researched it for my mum also but gp is putting her off it
Cian go for it! It will be allowed in the UK and I presume but don't know NI from next month!! It will certainly not harm her. How could anything do worse than kill her? That's what faces her without something to help.
Have you taken her to a specialist hospital in Ireland? Maybe they could put her on a trial which might work? However I doubt it and a trip to uk might be too much? There is another post on here with some details. Also look up older posts! Hugs to you both.
Thank you marie..she attends the dublin neurological centre in the mater hospital..shes on sinemet for parkinsons..no help really...woyld love to try her on the thc soectrum cbd..shes on the hemp oil no help at all..i would take her to the uk if i thought it was more advanced in the treatment of cbd..anything to try to stall the disease marie xx
Can only tell you that people who have tried it have said it has stalled the disease quite a lot in some cases. Nothing to cure it sadly. Sinemet can help some but not others. However some who come off it notice a deterioration. So everyone really is different!
Just heard on the news they are only allowing 3 conditions to be treated with CBD Oil. One is MS, one epilepsy, and have totally forgotten the other. It wasn't PSP however! They did say that it will help with research and they think other conditions will be allowed it in future! How long that will be is anyone's guess?
Is there anyone out there who sends off for this oil to help a loved one? Please can you share? I know Kevin did but can't recall what it was so hoping someone remembers?
Take care Cian and hugs to your Mother. Sorry it has taken a while to reply! Having problems with this stupid thing! Got back at last anyway but hope it stays that way.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.
Cbd Nd sativa have been a little piece of A miracle for mom. I'm so glad it finally was able to be available. You will find thar Drs are brainwashed when it comes to cbd and sativa. That's why me and my siblings took things into our own hands with moms approval. She wanted to try it a couple years back when she first heard about it. Of course her family was against it and she didn't try it until she came to live with me and my brother. What a difference. She has been on it since June of this year. I try to tell everyone about it that I can. I also know people that have their young daughter on cbd to help with seizures and appetite. It's truly miracle drug. I know it won't cure mom, maybe the more research and tweeking they do with it maybe just maybe it will start curing different diseases. Welcome to our group. These people are truly wonderful and have helped me more then I have told them or more then they know. Keep us posted on your journey and remember we are all here for you. Hugs and blessings
My name is Andy and I too care for my wife who has PSP. You said you were a nuts and bolt type of guy. I run a website for my local PSP group in the Phoenix AZ area. The website address is supportpsp.com Everything on the site is free, we don't ask for donations. The site will cover things that will help both you and your wife. I invite to to read what we have provided. It's only your time and you have alot to gain.
Thank you Tim fantastic so happy yes I am going to try that for sure we’ll done and Thankyou for sharing so pleased to have something positive life is really hell with this disease no I just got to find some way to get it 👍😉
Thanks Tim. My husbands PSP is advanced. He cannot walk, barely help transfer, is doubly incontnent, and no longer speaks. I am in Wisconsin, USA. I bought a CBD oil reccommended on this site from the UK. I have tried it several times and it does seem to perk him up a bit. He can focus a little better and just seems more aware. I have some problem figuring g out the right dose etc.
Can you share the brand of oil you are using. Is it easy to get in Michigan. It seems to be illegal in Wisconsin. We’re working on legalization with a new governor, but that will take too long. Also, have you received help or reccommendations regarding dosage.
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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
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