Thank you all

[tamaradecarlo]

Thank you all for your thoughtful responses. I live in San Jose,ca

[Dadshelper]

Do you have family helping you? If you haven't already I would see if you can qualify for Medicare/Medicaid. If you are a veteran there are some more options also through the VA.

Ron

[tamaradecarlo in reply to Dadshelper]

My Brother who is a doctor helps me most He has no experience with this disease psp.my children come about every other week or so however I'm not sure they know how this disease is affecting my life.I feel so alone. Thank you for being there for me

[doglington in reply to tamaradecarlo]

I'm so sorry to hear that. It must be frightening feeling so alone. Your children need to know how you are finding things so difficult. They will need to be involved in planning for the future. My husband enjoyed going every week to the hospice for socialising. That's in England. I'm not sure whether that happens elsewhere. We also went to the PSP group meetings. It helps to meet others who are struggling.

Love from Jean xx

[ncgardener799]

There is an organization called Cure PSP. They have web site, support groups, lots of information for yourself as well as your health providers. They will send you information and offer help in many ways. There may be someone locally for you to contact that is part of PSP support . I suggest you contact them thru their web site-curepsp.org

They also have a national family conference each year-the location varies. We reluctantly attended last year as it was close to our home in NC, it was amazing !! WE made some wonderful connections and gained knowledge from professional familiar to this disease. What type of Dr are you seeing for your PSP? is there a center of care for PSP or Parkinsonism in your area? If at all possible a neurologist that is a movement disorder specialist is recommended. Stay connected-hugs , Pat

[Christine47]

OMG you have the gift of being near UCSF a preeminent research facility for PSP and Robin Riddle's support group. Her website is brainsupportnetwork.org/ at Stanford I envy you.

[SewBears]

I’m from the Bay area, but now we reside near Las Vegas NV. San Jose is a beautiful place to live!

You’re lucky to have a brother who is in the medical field. Maybe he can cut through some red tape and get you in to see a motor neurologist specialist? How were you diagnosed?

I’m a caregiver for my husband who suffers with a cluster of one of the brain diseases, he has either CBD, or Lewy Body. We don’t really know. Anyway, it’s normal to feel lonely and I’m glad that you reached out to us. Do you have any hobbies to help occupy your time? Staying busy is key to not dwelling on the future. Live in the now if you can.

Hugs from I SewBears

Xoxo