new diagnosis

this past week my mom was diagnosed with psp  I have not ever even heard of the disease. 

She has had many diagnoses but none have really matched her symptoms until now. 

Reading the symptoms alone are scary.  She has fallen backwards for about 3 years now. Very clumsy, dropping most dishes in the kitchen.  I am the only daughter and also live 4 hours from her.  my dad is still living but hes 80 years old and trying to care for her.  Recently she had to give up the walker and go mostly to a wheelchair.

I guess I just want someone to understand and listen and give advice on the days ahead.  Please give any comforting words you might have.  Thanks so much.

15 Replies

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  • Hi, Caroleen. I'm very sorry about your mother.  I remember when we first got the diagnosis.  We didn't have a clue. The neurologist basically told us to go look it up. That was five years ago. It was an awful shock when we had the diagnosis confirmed. You have come to the right place for understanding and advice. This is a great community, very caring and helpful. I don't know how I could have coped without it.

    Worrisome to be so far away from your parents. If you are in the UK there are good resources for your them, I think. Not so much here in the states. In any case, you can ask anything here. Someone will be sure to have an answer. Hang on. 

    Easterncedar

  • hi easyern cedar,  I have recently  moved to santa rosa.    am fallong more lately, bit still just once every couple of days.  soon,  -alice

  • Welcome to the site Caroleen.  I'm sorry about your sister's diagnosis.  You will need to get help organised but we are in the UK and I'm guessing you are in the US and I don't know much about the system there. Others will be able to advise better about that.

    Try to stay positive and keep posting.  This is a great place to ask questions and look for support.

    Vicki x

  • Sorry Caroleen - of course I meant mother not sister!

    V

  • Hi Caroleen, sorry to hear about your mum's diagnosis.  If your dad is struggling he needs to get assistance if in UK contact PSPA or in US try CurePSP.  They have recourses to help with explaining the condition and how to get help to support you and him.  If in UK get his GP to refer your mum to local OT, Physio, speech therapy services, they will help with adaptations and aids to make the home easier.  The local social services will also need to be contacted and a social worker will be allocated they can help get the correct resources and benefits if not already getting them, your mum will be eligible for Attendance Allowance and your dad to Carers Allowance.  Cannot help about US assistance but CurePSP can help.

    Best wishes to you and your patents, good luck Tim

  • Hi Caroleen,

    Wish we didn't have to welcome you here, but welcome! My dad is 92 and my mom (who has Alzheimer's) is 86 and they have 24 hour home care, plus me and a nursing student as second caregivers most days. We added the home care gradually over the years, starting with just 3 hours in the morning getting my dad up, washed and dressed, making breakfast and doing the laundry. When my dad couldn't get out of bed any longer without falling, we had to move to 24 hour care. Sounds like your dad might be ready for some help with your mom.

    I just replied to Gracie Girl, also new here this morning, with some recommendations of things that have helped my dad. Hopefully you can read that, but most recently Amantadine has helped him. I also recommended physical therapy and any exercise possible. We also have a "stand assist" device (we have Lumex brand, others have "sara steady") which I would recommend for help with transfers if that's needed. My dad uses it mostly for exercise going from sit to stand. 

    Anyway, you've found a wonderful resource for advice and support. Best of luck to you and your mom.

    Take care,

    Carla

  • hi carla,  my best friends name  are you n the states, where? gpod    yir ps

    yours, alice.

  • Hi Alice,

    Yes, I'm in Massachusetts. Are you also in the USA?

    Carla

  • yes,  Imm in californis but my best friend is utside b-town

  • My daughter is going to school at CalPoly in San Luis Obispo. It's beautiful there!

  • yes, i'm further north.  a house in marshall, ca.  how old is ypur daughter?  mine is almost 30.  yikes

  • 19. Can't wait to see her back in MA in 7 weeks!

  • 7 weeks  wow    age? 

  • hi caroleen, good luck, Alice

  • Hi

    Echoing comments from above.  Please read the material from the PSP Association.

    It will tell you most of what you need to know.

    Also print out the 'Professionals' notes.  It is a rare illness and most professional don't know of it.

    Giving you and example... We had to refuse a Zimmer frame because with PSP most folk, like your Mum, fall backwards... a Zimmer frame can be dangerous.  Theyt did not get that.

    Also, in my experience, professionals confuse it in their heads with Alzheimer's or another dementia. I constantly have to remind them that my wife has capacity to make decisions but that she processes information more slowly and cannot easily find the words to say what she knows what she wants.

    Every case is different. If you read the list of possible symptoms and disease progression, well that might not apply to your Mum.

    My wife is 4 years into the illness... she knows who she is and what she is doing.  I am so grateful she does not have dementia. I guess IU ma saying it could be worse.  Its a dreadful disease, its hard going , but it is doable.

    Here, we survive.  We have insisted on having a quality of life by taking the good parts and managing the bad by being informed.

    My heart goes out to you. Learn about the illness and it becomes easier to make it work.

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