I have not visited this site for quite a while and now as I read several stories posted by those whose members have PSP it really makes me feel very sad.
My sister has been diagnosed with PSP about four years ago. She was a very energetic person, exercised regularly, and very active in her Catholic community. And now ..... she is half-paralized, too weak to walk. She has to struggle to speak; we have difficulties understanding what she is saying. Her mind is still normal, she remembers people, remembers things happened in the past. I can imagine how it breaks her heart to see normal people around her.
We live in Jakarta, Indonesia, and there is no community for those with PSP. Most doctors here do not know what PSP is so I am so glad to be part of this community.
Warm regards,
Melanie
Written by
Aryanti
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20 Replies
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Sorry to hear about your sister. This site is a life line for all of us. We are the ones who know how it feels to be a care giver of someone with PSP. Most doctors and medical people haven’t heard of PSP or the other related neurological diseases. One of the first questions I ask of any medical person is if they have heard of the disease. If not I fill them in.
Hopefully you can find answers to your questions here. Unfortunately even if the medical staff have heard of these diseases eventually it just comes down to keeping your sister safe and comfortable.
sad to say, my sister has lost her interest in life ... she just sits and sleeps while her mind is still active. no one to talk to except the two helpers. I am working, hence cant spend a lot of time with her.
I'm so glad you found this site, even though it's one no one would welcome being on.
I am a Psp patient in Portland, OR being seen at Oregon Health Sciences University by a neurologist very familiar with Psp as is my internist who is very sympathetic to my plight. As of now, my main problem is balance & clumsiness so I use a walker 24/7.
My advice is to contact Cure Psp to have information sent to you about the disease so you can pass it on to doctors, physical therapists,etc . You can do this online.
thanks Mottsie. it is hard for my sister because her two children do not live in the same city as her. One lives in Singapore and the other one in Bali; they have their own family and naturally they have their own priorities hence they do not come as often as they should. I am the only sister who lives close to her. Fortunately we have two helpers to take care of her 24 hours.
Moral support from this group means a lot to me, thanks to you all!
Las sugerencias de mis colegas de "chat" son sabias y se basan en sus diferentes experiencias. En mi caso han sido de mucha ayuda.
Esta enfermedad se manifiesta de manera similar pero diferente en cada paciente. Los participantes en chats como este ofrecen prácticas y soluciones para aprender y, a través del método de "prueba y error", logran una calidad de vida con momentos interesantes a pesar de todo.
Convivimos con PSP-RS desde hace 6,5 años. Por correo privado, le envío nuestras experiencias particulares en PSP-RS que esperamos les puedan ser útiles en algún momento.
Luis - Sorry. I used Google Translate : 'On this screen, at the top right, you will find a box in which you can translate it by changing the language.' I may be being foolish but I cannot see the box. I was wondering why you were posting in Spanish recently rather than your usual English.
This site is a brilliant place to find information from real people who really understand the frustrations and difficulties of caring for people with PSP. It’s a difficult journey for us all but being on here stops us from feeling alone.
Las sugerencias de mis colegas de "chat" son sabias y se basan en sus diferentes experiencias. En mi caso han sido de mucha ayuda.
Esta enfermedad se manifiesta de manera similar pero diferente en cada paciente. Los participantes en chats como este ofrecen prácticas y soluciones para aprender y, a través del método de "prueba y error", logran una calidad de vida con momentos interesantes a pesar de todo.
Hemos estado viviendo con PSP-RS durante 6.5 años. Por correo privado, le envío nuestras experiencias particulares en PSP-RS que esperamos puedan ser útiles en algún momento.
Abrazo y suerte.
Luis
En esta pantalla, en la parte superior derecha, encontrará un cuadro en el que puede traducirlo cambiando el idioma.
For some reason, Luis's message keeps getting translated into Spanish.. Please allow me to translate it and forgive my poor Spanish:
From Luis:
I am Sorry, PSP has entered your family. Suggestions from my "chat" colleagues are wise and reflect their different experiences. In my case they have been of great help.
This disease manifests in a similar manner, but differently in each patient. The chat participants offer practical solutions to learn and, through "trial and error", achieve a quality of life with memorable moments despite everything.
We have been living with PSP-RS for 6.5 years. By private mail, I'll send you our particular experiences in PSP-RS that we hope you will find useful .
Hi, sad to hear about your sister. As a care giver I can advice you to consult a phoniatrician. The excersises recommended by this specialist has helped a lot my sister. She has gone to the specialist three times during the 14 years she struggles against PSP. She still speaks clearly. Good luck!
Glad you found this sight. I take care of my husband with PSP. He does get around but only withe the walker and me hanging on to his gait belt at the same time to keep him from falling. Visiting nurses are now coming for eight weeks only but on their initial visit two had no idea what PSP was and I gave them the web sight. Told them I was not comfortable with them caring for him until they read all they could about it. I am in the USA. Welcome and I send my thoughts for you. NancyX
Hi Melanie , every time i read post its brings a tear to my eyes,psp is a disease which can be different from person to another, eyes are affected
and balance, speech, weakness, swallowing, all this can be overwhelming
but reading these post is a lifeline for helping your sister,the doctor's know very little about psp and it's me giving advice to the doctor.
one thing i have found helpful is the use of coconut oil in cooking and in hot drinks also amitriptyline 2 x 10mg my wife Kathy takes it's helps for brain function in movement also helps with sticky Saliva,i hope this helps
I often felt the “apathy” - while initially upsetting in its extreme contrast to get upbeat, energetic prior self, was a blessing for my mom. Not for us, but for her. The trick, I found, was to assume she was alert and engage her normally even if she didn’t always respond accordingly. Your sister is lucky to have you and just keep doing the best you can. Big hugs.
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