I desperately need help living with advanced PSP

[Annah33]

Hi, I am new here and was diagnosed with PSP just a year ago after having several neuro diagnosis over 50years I have advanced dysphagia but will not have a PEGfitted. I sit leaning to the left and I cannot read a book now. I have recently had a stroke and now have some memory loss. My brain wants to work but my body is becoming very frail and weak. I get very depressed and tired. My little family won't accept I have such an illness. I feel helpless and I wondered if anyone of you could help me. I have spent my life helping others but now I have no-one to help and advice me. Thank you so much.

[Dadshelper]

Welcome to the site. We can offer advice based on our individual experiences. Collectively there is a wealth of information here. If you can let us know where in the world you live that will help tailor responses for you. Your request for help is very opened-end, there are a variety of issues with these diseases. Narrowing down your need "for help" will allow us to advice you better.

Ron

[SewBears]

Hi,

Ron is right. We can offer suggestions but a lot will depend on if you’re located in the states or if you are in a different country. I would start with alz.org. Even though you have PSP there is a wealth of information on the Alzheimer’s website. Are you looking for someone who can come in a few hours per week, per day, or something else? Please let us know more about where your from so that we can better understand what you’re looking for. This website is full of people who are going through or have been through your experiences. One of the hardest things to accept is the isolation, but you have us so please ask and vent. It’s good for you to open up and get your story out there. I guarantee you that someone is dealing with similar circumstances and we’re all more than happy to chime in.

Thank you for reaching out.

Sending hugs from I SewBears

Xoxo

[Annah33 in reply to SewBears]

I live in England. I do hope you can come up with any suggestions as it is all quite new to me

[Melhukin]

Your family will know that you need help, maybe they find it hard to accept you're suffering with this disease and they probably don’t know how to help.

At one point my father became depressed when he was suffering with this disease and was scared about dying, the doctors gave him as we called them “happy pills” to help him come to terms with his disease and this changed his mood completely.

I think you’re best talking to your family and tell them your worries.

[Annah33 in reply to Melhukin]

My family do not want to hear me speak about anything re PSP. If I mention anything about it my niece just walks out of my door. It is very sad for me and I feel so isolated. On the other hand I have 4 good friends who are so kind to me but do I just accept that my little family have gone from my life. Many thanks

[Annah33 in reply to Annah33]

Bye the way I live in England

[SewBears in reply to Annah33]

Hi Annah,

Sorry I wasn’t able to reply sooner. I have a similar post about family members and their lack of ability to help out. If you click on my SewBears picture you can access the post. It’s titled “I Did It”. There are some great replies about how and why family members act the way they do when a loved one becomes ill. It’s hard to accept but unfortunately it happens. Having said that, how much does your family understand about PSP? I’m so sorry that you’re going through this. Please read “I Did It” and let me know if the responses help. I hope to hear back from you soon.