Hi everyone, I'm new here.

[Adoey]

I was diagnosed with PSP in the summer of 2020 and have been having stiffness in my legs and sometimes they even give out and want to 'buckle.' This comes with weakness and not much coordination. It's hard to think straight when I'm having these spells so I don't even try to do anything that requires concentration or make any decisions. If anyone has these symptoms have you found anything that helps?

Thanks so much. Adoey.

[LuisRodicioRodicio]

Hi Adoey!

I'm sorry PSP/CBD/ etc. has entered your family.

These kind of diseases manifests theyself 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.

I am not a phisicyan.

During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

I am sending you by internal mail those notes hoping could be useful to you.

Hug, luck and courage.

Luis

[Adoey in reply to LuisRodicioRodicio]

Hi Luis, Thank you for your kind words. It is so good of you to have collected information on the symptoms, treatments, etc. on the PSP/CBD illnesses and to share that knowledge with patients and caregivers. Since I am new here how does one receive your notes by "internal mail." I would be very interested in learning more. Thank you so much, Adoey

[LuisRodicioRodicio in reply to Adoey]

Hi Adoey!I am sending the documents to you by internal mail.

Hug, luck and courage.

Luis

[AliBee1]

Dear AdoeyI am so sorry to hear of your diagnosis. Tim Brown who has had PSP for a long time has written some excellent books on what it is like living with PSP and he refers to his legs as acting like 'tree stumps' at times. The books are called The PSP chronicles and are available on Amazon. Maybe you would find reading the first one useful. I am sure that the information Luis has given you will also be very useful, as, as he says everyone is different. I am so glad that you have found this site as you will get so much information from it from all across the world. Good luck. AliBee xx

[daddyt]

Hi Adoey. Welcome to the group that nobody wants to belong to, but are sure glad it's here. Leg issues have and continue to be my nemesis. I have and continue to experience the issues you've mentioned... and then some. A quick word - Exercise. Keep your legs moving. As the saying goes, 'if you don't move them, you lose them.' I can say the same for core and upper body muscles. And, as much as I don't always like to exercise, I do, because it makes the difference in my mobility. You must also face the fact there will come a time when they will not work, but I don't tell my legs that. The problem is with messaging from the brain... put that call on hold.

Tim

[Adoey in reply to daddyt]

Hi Tim, Thanks so much for your message. Yes, I agree that exercise is very important and when I feel good I make the most of it. But I'm finding that on the bad days my legs are getting stiffer more often; then I become a 'couch potato' . I am so thankful for this site and to be able to share our thoughts and feelings about these neurodegenerative diseases with each other. Take good care. Adoey

[daddyt]

I know all about those bad days, try your best to push through them as difficult as it can be.

Tim