Hello all I don’t know anyone out there lives in or near New Jersey but I have to ask, if anyone knows of a neurologist. My husband Charlie has PSP and his doctor left the prectous. And I need someone good. I hope someone out there can help.
Thanks
Marge
I'd say look for a neurologist who is a moment disorder specialist. a "regular" neurologist may have no experience with PSP. Larry and I have used Penn Neurology at 9th and Pine Streets in Philadelphia. They are OK. I can't say I would give them glowing reviews. There's not much they can do for the disease. I made the effort to get him there which for me is a big production. Was told nothing had changed and we left. I have found out so much more reading this site daily. What things could possibly happen and to watch out for should they happen.
Thank you I will look into it
sorry Marge I can't help, but hope you get this sorted soon. Love Nanny857 x
In my experience, a good GP is better than a neurologist. There's not much that can be done for PSP, medically. We had an excellent neurologist who specialized in PSP, which did mean we were confident that we were getting good information. We had an appointment in the city 3.5 hours away every three or four months for three years. We tried all the various drugs and CoQ10 by the bucket. Then we just stopped going. All along, we were really lucky in having a good GP, who was kind and caring and whose practice is close to our home, and who helped us most of the way. Everyone should have such a doctor.
Thank you Charlie’s numerologist did say his PA knows more then he dose. I felt at that point he was giving up and we didn’t go back. Should I give them a chance? I know there’s not much we can do at this point he has had this now for almost 12 years.
Thank you so much
Marge
Hi Marge,
I have a friend in NJ whose mom passed away from PSP. She really liked the doctor they saw, said he knew exactly what her mom had when he first saw her! I recall, while browsing through psp.org, seeing MaryAnn’s name listed as someone you could reach out to for support or information, but couldn’t find it again to send you the link. Anyway, her phone number is 732-752-3841. I alerted her that I am giving you her name here.
Best wishes and kind regards,
xoDorie
Dede thank you so much I will give her a call. Bless you and so sorry about your friends mom.
Marge, MaryAnn asked me to tell you to please leave a message and she’ll call you back. She said she doesn’t answer her phone if she doesn’t recognize the phone number. I hope you’ll connect soon!
xoDorie
Dede thank you again I did speak to Maryanne she gave me the name of the dr that took care of her mom. We go see him in May. God bless
Marge
I am so very happy that MaryAnne could help you! And that you were able to get an appointment in May! Is the doctor nearby for you?
Hi Marge, my partner, Sam, has PSP & we do go to UPENN. I do find it a waste of time because they did not diagnosis Sam. Sam insists on going for visits with being told that there really is nothing to do but never used the PSP word. Sam got diagnosed in Florida at university of Florida 2 years ago. Being snowbirds up until this year, cause of many hospital visits, we decided to stay in New Jersey. I believe the previous post that a good GP is the route to go. We have been very fortunate but just taking one day at a time. It’s the roughest & toughest thing I’ve ever done, even with 24/7 help. Some days I can’t believe this has happened. As I tell my 4 sons often...there is a reason for everything. My prayers go out to you.
Xoxo Kathy
When Michael was still able to be transported, we went to UPENN also...Dr Branch Coslett and also Dr David Irwin. They both were very nice and as helpful as they could be under the circumstances. As you said, there is no treatment but they made recommendations as they could. They each diagnosed hubby on the first visit (CBD). Good luck.
Liz
Wheelchair car for sale
Looking for a lovely CBD carer in the Yorkshire Dales
Good recipes for dysphagia?
S is having a good spell. H E L P!!!
