we finally asked..."is there an organization for this rare disease?"

[taffylaf]

hugs to you...I am soooooo happy to find you....just received my 5th series of botox at MAYO Clinic in Rodchester, Mn., and have a hankering to connect with fellow sufferers!!!!!

GOOD THOUGHTS TO YOU TAFFY

[Marie_14]

Taffy welcome. Wish I didn't have to say that though. The people on here are a mixture of Carers and people with either PSP or CBD. They are all great and will give you the support you need. Also lots of advice. Many of us who were carers for loved ones are still here from time to time. So you have joined a very caring community.

Marie x

[taffylaf in reply to Marie_14]

thank you Marie ...tears of gratitude..it feels good to receive your encouragement

[doglington]

Welcome. This site is a godsend as you can talk to carers and sufferers. We share knowledge and support each other and a touch of humour.

love, Jean [ in UK ] x

[taffylaf in reply to doglington]

Jean oh yeah....humor is so good...so I no longer watch the news....we record old comedy shows...fast forward thru the commercials... and giggle a lot

[Hidden in reply to taffylaf]

Strangely enough as ill as my dad is he still has his amazing sense of humor at times thru it all.x

[Hidden in reply to doglington]

So glad to have made contact with some others on this planet that are going thru the same thing. Tough dealing with something so rare.

A godsend for sure.

God bless u all.x

[aliciamq]

Hi, taffylaf ~ Alicia from Detroit💗

[taffylaf in reply to aliciamq]

hey Alicia! I was diagnosed 2 years ...and every 3 months get botox injections

into contracted muscle...it cuts the pain 75%...so less meds! how long for you?

Taffy

[Marie_14]

Taffy I just happened to read your post! Have been having a lazy day!

Lots of other people on here too and Jean and Alicia have also replied to you.

If anytime you want answers to questions just post. Or even if you just want to say hello. We all know the feeling of feeling lost. This site probably saved my life when I was caring for my husband. Actually it is probably still doing it!

Love to you from the UK.

Marie x

[taffylaf in reply to Marie_14]

hey Marie...thank you for your info....we are in Mn....1 hour from MAYO, where

after 6 months of tests, received the CBS news. I am so excited to have this site

to go..so much better then feeling alone. I am sad for your loss (?) ....but it seems

you are working on getting thru it!!!! to you I send much respect and love for

being his caregiver...such a demanding job! let's keep in touch! xoxo Taffy

[Marie_14 in reply to taffylaf]

Taffy of course we can stay in touch. Just post or PM me anytime. Yes my husband has gone but this site saved my sanity! You do wonder if you are the only one feeling things. The answer is no you are not! All of us feel all sorts of emotions at one time or another.

You are lucky to be near the Mayo. They are very good I am told and I used to use their website for answers to all manner of things!

Take care.

Marie x

[Hidden]

Hi Taffy, I am the carer for my dad, he was diagnosed with CBD in Jan 2016. Lots of good advice / info and everyone is willing to help in whatever fashion they can.

Ron

[Sonia1970]

Lovely picture so pleased to find you to yesterday so many tears of at my neurologist your a blessing I'll ask about botox for me cheers Rebecca

[Duffers]

Hi taffy. Welcome. Lovely photo. Post anytime. Always someone up from all corners of the globe.

Good luck. The other marie

[Fer39wer47da]

Hi taffy, welcome to this wonderful club of people.

I just wondered why you had your Botox injections?. What this for your eyes? Drooping eyelids etc.??

I'd be interested To know, because I 've just had eyelid surgery, and

that seems to be working pretty well. Let us hear from you .

Bye for now, ,anne baer

[taffylaf in reply to Fer39wer47da]

hey anne...good question!! the CBS is a very painful constriction of ALL the muscles on the left arm, hand, and upper left side. it is very painful ..MAYO

said when you are ready, we will have a neurologist do injection of botox thru

the EMG NEEDLE to the belly of the constricted painful muscle...it takes about 3-4

days to take effect, and only lasts about 2 1/2 months....but it really cuts the pain

because the muscle relaxes!!! I wish you well...be patience with your lid surgery,

it takes a good nine months for the swelling to go away. hugs Taffy

[Sonia1970]

Seeing your photo taffy makes you real thanks so much my face has droop I alot so ashamed of this so I won't put a pic on here however my man and son are say mum you still look pretty

[taffylaf in reply to Sonia1970]

sonia... I have CBS in my left arm, hand and left leg. do you have the speech

apraxia? sounds like you have a wonderful supportive family!!!! priceless...priceless!! please give them both a huge hug from your fellow

sufferer. have a super weekend...sometimes I binge on old tv series. right now

I am consumed with "brothers and sisters" take care xo taffy

[Sonia1970 in reply to taffylaf]

Sadly I'm an only child my family barely want to know me since I'm so sick my daughter doesn't speak to me sadly and doesn't won't except it nor mum or there respective partner my main support is from my doctors only sadly and my physicologist I see my man when I can but my main support is my son he's 9