medicine

[Advocate10]

my wife was diagnosed yet, she is meeting next week to discuss different meds, does anyone have any recommendations or experiences that might want to share

Just starting down this road

[Bergenser]

There is so much to take in and not all neurologists have experience with all the different manifestations of PSP. I've previously posted a link to a summary article from Cure PSP. It's not the easiest read but it goes through all the different symptoms, options for managing those symptoms, and discusses the suitability of various drugs. It could be useful to read through and perhaps also bring to your appointment.

healthunlocked.com/psp/post...

I would also recommend this article from the UK

pn.bmj.com/content/21/5/376 - the authors head up the specialist clinic in Cambridge that my husband attends.

[Araucana]

Definitely recommend Dr Rittman in the Cambridge clinic. If you can get there, they will take referrals ( even if your GP laughs and says they won’t). They changed most of the meds my mum had been prescribed by neurologist at hospital and sadly said they could have done more if she had come to them when it began- mum was seeing a neurologist in Berkshire then and we had no idea at that point who to see.

[DaddysPrincess]

When my Dad diagnosed with it, we started to “prepare” for it (but I still grieve and cry even how we tried to prepare). As the name goes progressive, it really progresses. He used to have a cane then walker then wheelchair and now he’s mostly in bed. He experienced lots of falls. He might looked okay and tried to things by himself (early stage) but please if possible be on guard or assist or just stand nearby because many time he can’t control it while walking good he just fell, or his walk pace went fast without any warning that he can’t control. And when they need help even they look okay to do it, it’s true that they really need help. And cherish each moment even simple time like eating, walking together, take lots of photos and videos (especially speech diminishes as the time goes by) and do what your wife loves to do and eat and let her always know you are there and lots of people love them and they are not a burden. And laugh, have fun and have humor (it’s hard but I’m like a clown sometimes) to Dad to make him laugh and happy in spite of the grief. And of course it’s okay to cry. It’s a big transition. Hope you can find a support group for you and your loved ones as well to go with you all through this season. Prayer, having faith helps very much.

*every time I see child and elderly parent walking around the mall assisting their parent around I still cry, I can see myself and miss those times with Dad that even in his wheelchair we can went around. No regrets I cherished each moment with him and chose to prioritize him over my career. It’s been years, it’s all worth it.

He still recognizes me but can’t speak good anymore and his facial expression lessen (he can’t laugh, cry), he can’t swallow well, and mostly in bed. He’s palliative. I always hug Dad and tell him how I love and appreciate him.

[DaddysPrincess in reply to DaddysPrincess]

Dad can still decide that time for his own and he decided not to take any neuro medications 💊 because since it’s a rare brain disease, there’s no definite medicine for it yet as far as we know. The neurologist wanted him to try a medication for Parkinson’s but he refused since he was taking lots of medicines already for his maintenances (hypertension, diabetes and etc). The course of his PSP went according to its nature. He did take a stem cell supplement, it helped alleviate the symptoms that time but he wasn’t able to continue to take it.

[LittleOllie in reply to DaddysPrincess]

Your post sounds similar to my experience with my mom. 7yrs down the line and we are coming to the end of the road. Now bed bound, unable to do anything we are just watching and waiting for the dreaded day that will come. The amount of research that you have to do to try and help your loved one is enormous. I left my mom's bedside earlier not knowing if she will be alive tomorrow. I'm heartbroken 😭💔