shout out to everyone

[Dpriy]

hello all,

I am Daisy from India.After joining this forum three weeks back I learnt so many things as a carer and I just wanted to give hugs and love those who are suffering and still making it. My dad who is diagonised with PD in 2018 though his symptoms started earlier and rediagonised with PSP in 2020 is in advanced stage right now. He lost his weight drastically in last three weeks once his swallow become slow. everyday I read lost of similar stories with wealth of information this forum seems to be my guiding force on taking decisions for him . I become more and more and more gentle towards him compared to previous years and I regret for not spending much time with him earlier. Thanks for all the wisdom you guys are providing me with your valuable suggestions and discussions. Love you all 😊

Daisy

[LuisRodicioRodicio]

Hi Dpriy!

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

Despite having an effective, efficient and gentle GP, the necessary scheduling of visits to his office or to the emergency hospital, the necessary displacement, always complicated, the "roller coaster" of more or less banal symptoms that PSP generates, many of them unforeseen and repetitive, led us to a certain experience that, together with the possibility of consulting by telephone with some medical friends and family at any time, allowed us to alleviate the symptoms quickly until hours or days later we could consult with our GP.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests they self 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 support of a GP and the "trial and error" method, you could achieve a quality of life with interesting moments despite everything.

I am not a physician.

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

Wishing the best for you and your family and if the those notes-document with our experiences and our information are of your interest, do not hesitate to let me know to send it by the private mail of this chat.

Hug and luck.

Luis

Note.-The aforementioned documents include some photographs in "jpeg" or "Excel" charts that the PSPA private chat does not support and are canceled in the copy that I include in the private chat. In that case, if of interest (pictograms and communication boxes, the description of symptoms of the different types of PSP et cetera) the only solution is to send it by email to a "gmail" or similar email address. If you are interested and to avoid unnecessarily spreading your email, I suggest you use the internal "chat" channel of this website.

[Motts]

Hi Daisy, this is a good & caring group of people. So glad you found this site & that it is helping you to understand PSP a little better. My mom had PSP & we found it to be a mystery (never new what symptom would be next). Sending hugs to you & your dad... Granni B