My mom was recently diagnosed with PSP about a month ago. She has probably had it for three years.. she is still walking but her mobility is poor.. lots of falls and visit to the Emergency Room. This recent diagnosis explains the cognitive and behavioral changes as well as the decline in her vision and mobility over the past three years. I am hoping to use this forum to connect with others and learn more about PSP. This appears to be a long road ahead and Support is a great thing!

8 Replies

  • This is the place for support and information, Jenna. Welcome. This community has been wonderful for me. Now, after 6 years of dealing with PSP, I feel like one of the old hands. I was carried this far by the friends here and am always happy if I can pass along some of the help I was so kindly given. Ask, vent, share...someone is usually awake.

  • Thank you for being so welcoming. Mom hasn't been mom for a long time. She was there when the Dr. made the diagnosis but never asked any questions or made any inquiries since. I am not sure she can process it right now.. she is taken medicine to control auditory hallucinations or voices ( another separate medical condition) which make her extremely tired... I know that a wheelchair is something we will need in the near future.. any suggestions on good ones? Thanks in advance.

  • Hi my mum was diagnosed 2 years ago but sounds very similar to your mum. She had been showing symptoms 3years earlier. In mums appt she didn't question the diagnosis or ask anything. My mum is always 'fine'. We had a stable 18months with just increasing falls but no breaks. Then the falls were increasing and she broke her wrist. This has really set her back and she has started to have vision problems. My mum never complains and luckily for her and us she doesn't think there is anything wrong with her. But her lack of empathy and caring about things went way before the diagnosis.

    This is the first time I have written on this site but have often read the posts. My dad passed away recently which means as a family we look after mum with carers going in every day. I hope you find this of some help and your mum keeps in good health as long as she can.


  • Karen,

    Sorry to hear about your dads recent passing. My mom sounds like your mom , "always fine" with no clue of the prognosis.. Her vision is poor as well as her voice. It has become very soft and hard to hear..especially for my dad since he has a hearing aid. she often chokes on water when drinking . I worry about when theses changes in her voice and choking will become more of a problem! Thanks for your support!

  • Welcome Jenna.

  • Thank you!

  • Not much of a welcome. Dashed off between caring duties. You will know that one I a sure.

    I do hope you will have a presence here.

    I find it to be a good safe and understanding place.

    Informative too.

    So now a better welcome I hope.



  • Kevin,

    Thanks! I have been on here, reading away and gaining information about PSP. After years of medical visits to specialists, we finally got the diagnosis for mom.. we were relieved in one breath to finally get a diagnosis but then hit hard when we all left the appointment to go home and read about what PSP is and the shortened life expectancy .. i know there are darker phases that my family will face.. reading these posts make me want to savor every day I have with her and make memories while she continues to walk, talk and eat foods with minimal swallowing issues..since time with Psp will rob her of these functions. I plan on hanging around and being part of the group!

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