brand new

[Advocate10]

my first day here, my wife of 37 years was diagnosed with PSP this morning..

It took a years to get this diagnosis, she was in an accident and had a TBI and never really recovered. She continues to decline

[carehope]

Hi Advocate10,We can all relate to being blindsided by a diagnosis that the majority of us including myself, had probably never heard of until we finally found out one way or another. For some people it took years of subtle then not so subtle symptoms , traipsing from one doctor to the next, and numerous misdiagnoses. But sometimes PSP, CBD , FTD , a combination, or some other neurodegenerative affliction arrives and fast forwards !

I think that the most frustrating and stressful aspect of PSP for me that was obvious from the beginning , is the lack of qualified medical practitioners in all areas of medicine when it comes to interacting with, understanding, and helping pts with PSP along with their caregivers, spouses, family members. Most people working in healthcare have little to no knowledge of PSP. Depending on where you reside in the U.S. , there might be a terrific neurologist who has dealt with pts who have PSP and will be helpful and responsive to the pt's needs. I lucked out when I found a neurologist to assist with prescribing as needed for my sister's PSP related needs. The GP, other doctors, and ancillary personnel always had to have my sister's situation explained to them. They also typically needed to be informed that my sister can hear , understand , and I even have to tell them to address A. , not me, when they're explaining or asking questions. Their knowledge of PSP is typically nonexistent. I researched PSP online on a continuing basis , especqially during the early years of providing care for my sister. I printed out the CUREPSP publication and also learned from other sites online the do's and don'ts of assisting with 'activities of daily living' .

Encountering the Health Unlocked site for PSP has proven to be a most educational and effective source for me. Medically related publications can be informative/helpful, but posts here also include suggestions related to daily life : dietary recommendations, legal advice, medical equipment, interventions that can improve health, quality of life, and provide comfort and support for the patient and their caregiver(s). Along with emotional support and meaningful info. , the caring , compassion, and humor on this site is remarkable and uplifting in my humble opinion 😊

I hope that your wife's condition can be stabilized , that you have help in providing for her care, and that you both have a good support network of family and/or friends. Don't hesitate to avail yourselves of all possible assistance ! And make sure that you try to take good care of yourself also !!

Warm regards,

Elise