Share experiences of CBD or PSP

[Sapphire1001]

Anyone who knows someone with CBD or PSP please get in touch. In particular someone who lives in Colchester. If you are in Essex or Suffolk please kindly get in touch. I am desperately trying to share experiences with other families going through the difficulty of dealing with CBD or PSP affecting a loved one. Many thanks

[Tippyleaf]

Dear Sapphire

So sorry not in Essex but please do share worries and ask questions in this forum . The geography is sort of irrelevant it is the shared experience that is invaluable on this site.

You could also call the PSP association help line and ask them where your nearest support group is.

Love Tippy

[Sapphire1001 in reply to Tippyleaf]

Thank you so very kind of you.

[LuisRodicioRodicio]

Hi Sapphire1001!

I'm sorry PSP has entered your family.

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´ll send you our particular experiences on PSP-RS that we hope you can find useful.

I am not a phisicyan. The information I´m sending you by private mail is a compilation of our own experiences and of the people who participate in the PSP chat. The information is made with good will and my best technical criteria that I have been able to contribute, thinking above all in guiding caregivers who have exception made of PSP associations chats and support to face this unknown disease.

Hug and luck.

Luis

[Sapphire1001 in reply to LuisRodicioRodicio]

Hello,

Wow thank you. I am taken aback by the kind, warm and helpful comments, people have posted on here. I would be most interested in your compilation of notes. Can I share my email on here?

Many thanks

Ru

[LuisRodicioRodicio in reply to Sapphire1001]

Hi Ru!

Your email is not necessary. I sent you the information by internal HealthUnlocked mail.

Luis

[Bonnie94]

I am in Colchester and my husband has psp. Whereabouts do you live? I'm sure we could meet up.

[Sapphire1001 in reply to Bonnie94]

Hello, yes I am in the town centre would be wonderful to hear from you. I am sorry to hear of your husbands PSP. How should we arrange a meet or we can speak over the phone? Let me know what you think.

[Bonnie94 in reply to Sapphire1001]

It would be good to meet but maybe speak on the phone first because the logistics may need planning. I live in the Maldon Rd area so not far from you I guess. Is there a less public wa we can share details.?

[Sapphire1001 in reply to Bonnie94]

Yes hi that would be great to speak and meet. How about you email me on [e-mail]. we can share details via email and meet. Look forward to hearing from you.

[Dickenson2]

I am not far away in Herts. Have you seen there is a get together on June 28thin London. My husband has had PSP for several years but regrettably is now in a nursing home as I could not manage him x

[Sapphire1001 in reply to Dickenson2]

Thank you for your message. Best wishes to you and your husband.

[AliBee1]

Sorry but we are in the South West. My husband has CBD. It looks as if you may have had some luck though so I hope your request is frutiful. They are very isolating conditions aren't they and without this forum I think I would not be coping at all by now. Good luck and big hug. AliBee

[Sapphire1001 in reply to AliBee1]

Hi Thank you for your message. They are very isolated and rare conditions that are so difficult to understand. Big hug to you. My mum has cbd, she has had it a number of years. We have tried various things, which have brought some relief. Macuna puriens is a natural form of dopamine which may be beneficial to your loved one also biojult cyan to prevent recurrenr utis. If there's anything else I come across I will let you know.xx

[AliBee1 in reply to Sapphire1001]

Thank you. I would not be able to use the natural form of dopamine as Nigel had a very bad reaction to dopamine but the Biokult Cyan sounds very interesting especially as Nigel is now resistant to so many antibiotics for UTIs. My daughter has just told me that it is available on Amazon. I will ask our Hepatologist as N also has liver problems and we have an appointment in a couple of weeks. Big hug. AliBee

[bluereba1]

My mom kept falling all the time backwards took to doc they said she had parkinson gave meds and came home it seems like every month mom had a new thing she would do get dressed at lease 50 a day clothes over other clothes, make bed then unmake it all day, brush teeth all day got were we had to delute the mouth was use alot,pace all day long around the table then would park walker then go get it round table again .so my sister decided to take her to different doc in chicago rush hospital soon as the doc came in looked at her said she has psp brain disorder that controls musles said she was doing all that stuff because the meds that others doc gave her was to strong and was treating her for wrong thing took her. Off it .mom gave every thing up cooking ,cleaning,bath had to have help, she loved to cook. Could not under stand her she got wked up because we could not under stand her,tonug was round, chocked on food, drinks had to go to pureed food,legs contacted, arm could not sit up on own,it was really hard watching all that then God took her 2018