PSP Association
5,174 members7,177 posts

CBD thoughts

Hello pippin123.

This my first post, so very scary, my man was previously diagnosed with MSA, then 6 years down the road he was re assessed and told it was CBD, we went to see professor Leigh, who was so kind and sympathetic, we have had 3 hard years where I have been using a standing hoist for movement, but have just relegated to a ceiling hoist, I can only say my biggest support is the OT department who are fantastic, my man has a severe drop head and slips to his left whilst sitting, we are now looking to get a specialised riser/recliner chair, which will make him more comfortable, also my continence nurse is amazing, we first had the Afex system which is an external catheter with normal boxers and a convene, which attaches to a bag, this was great for the first few years, as it worked day and night, but as the illness progressed we had more leakages and moved onto pads, these come in different absorbancies, so we can put one on at night and not have to replace bedding which is a godsend, I use washable pads on the bed, called Kylies they are blue quilted, and easy to wash and dry.

We also have a bed which has remote controls and an air mattress to prevent bed sores to wit pro shield is the new sudacreme!!

Hope this helps someone xx chin up 👍

5 Replies

Thanks, jd. It's good of you to share your experience, so sadly hard-won. Wishing you the best that can be, Ec


Hey Jd. Although painful and difficult, it certainly sounds like you have it together there. I'm sorry you have to have it together and I mean all the time, but I am glad you have supports to help you and your man keep it together.

Most of us here are PSP sufferers but CBD seems pretty similar to PSP.

Continue sharing and ranting when you need,



Welcome pippin 123, it looks as if you have things in place and will continue to get more as required with the help from your OT. Kylies are good aren't they and hold a lot.

Keep posting.



It's wonderful you are doing so much - it's a hard journey - best wishes for you and your husband


Thank you, it is really heart lifting to have a support network,never realised what I was missing out on 👍💐


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