Thank you! Merci!

[MoonCrane]

My dad (68) passed away peacefully in his sleep last month. He was diagnosed with PSP last summer, and my mom and I only joined this community a few months ago. We live in France and my mom doesn’t speak English but I was able to show her how to use the Translate function of her internet browser. We want to thank everyone for their contributions. We didn't even have to post our questions as many of you here had walked the same path before and offered great advice. Using the search function, we were able to get most of our answers. During the many times we felt alone and misunderstood, we read the posts here and they helped us through. The resources in France are scarce, even though there’s a great patient and caretaker association (France PSP) which is doing a lot of good. We were able to care for my dad this past year and provide him with comfort and love thanks to the community here. Even in the hardest times, like when we had to deal with my dad’s obsessive behaviour or his constipation, from existential questions to managing daily life, we found solace in this forum. I found the contributions by PSP warriors especially helpful and heartwarming as they helped me understand my dad’s experience, even if the disease was making communication with him almost impossible.

Unfortunately, after his diagnosis, my dad’s condition progressed very fast. When we felt we could no longer take care of him safely, we decided to move him to a full-time facility care after researching them carefully, thanks to the discussions here. He was in the care of a wonderful institution, surrounded by nurses and carers, whom we educated with the information we found here. My only regret is that I wasn’t able to say goodbye to him, but I know he is no longer suffering and was spared the final stage of the disease. If you are caring for a patient, please hug them tight and know that they’re still themselves even if they can’t communicate. Tell them you love them while you still can.

We're very grateful for this online community. Sending lots of love to the caretakers and the PSP warriors on this website. Thank you! Merci!

[carehope]

Dear MoonCrane , I'm sure that everyone who reads your post will empathize with you , your Mom , and your Dad , just as I do .

My heartfelt condolences to you and your Mom . I am so thankful that you were able to find a qualified professional facility with caring staff for your Dad when it was needed .

And Thank You for taking the time especially at This time , to speak so eloquently about the experience of caring for a family member with PSP. There definitely IS solace and help to be found when "connecting" with others who can offer ideas , support , and understanding .

I happened upon this site when my sister became ill over 10+ years ago. The people who have posted here about every aspect of the PSP experience have been much appreciated !

You and your Mom take good care of yourselves as you heal , and Be Well !

Elise/Carehope from NY

[superdad1Q]

thanks for sending that in.. it was typical of all the messages on here warm and gratifying to read. i am seventy one this year and have suffered from this horrible disease for over a year now and i have just found this site with all this to read and to digest and i feel so much better after readng your story. i suffer from falls more than anything else and my knees are comletely shot all togeher but i stuggle on. you mentioned giving peole around you giving you a hug and to say i love you (i think).. well thats what i need right now and your post gave me that

thank you

barry

[LuisRodicioRodicio]

Hi MoonCrane!!

Thanks for your warm words of support.

A big hug.

Luis

[Sharsuk]

Dear MoonCrane,

My heartfelt condolences to your mother and you.

I will make it a point to hug my husband and convey my love as often as possible.

[daddyt]

So very sorry for your loss. I'm glad you found support from the group.There's a wealth of practical and realistic experience amongst the members to draw from. When you're ready, perhaps you and or your mother consider PSPSP-CBD advocacy and help raise disease awareness.

Tim x

[45purple]

Sorry for the loss of your dad. I tell my husband several times a day that I love him and always before we go to bed. Speech is just about non existent but he manages to say I love you to. It’s such a horrible disease so very very cruel . Hugs to you and your mum 💜💜

[Purrlie]

So sorry for the loss of your dad. You have beautifully expressed how very helpful and supportive this site is, and it is good to know that your family was able to access it and find answers and suggestions to help you along your dad's journey. Sending a big hug. Purrlie