Help - I need a Neurologist/Specialist in PSP

[Motts]

How do I go about finding a Neurologist /Specialist in PSP? There are many Neurologist listed in my phone book but none give their specialties. I tried searching on my computer with no luck at all - (it is not always my friend). Thanks for any suggestions - Granni B

[Hidden]

You want a neurologist that is a movement disorder specialist. Who knew neurology broke down into sub specialties. What country are you in? Near any big cities? Teaching hospitals are a good place to find movement disorder people.

[Motts in reply to Hidden]

Thanks Jeff - I live in Illinois right across the river from St. Louis, Missouri and there are excellent teaching hospitals there. Driving there is an problem for me and there is a smaller hospital 30 minutes drive from me. I hope to find someone there - I am just not sure of the correct words to use when I contact the hospital. Plus I have the problem of my words not coming out correctly - for now I do better typing that speaking - I appreciate any advice you can give. Sending Hugs - Granni B

[Hidden in reply to Motts]

Are you the patient or the care giver? If the patient is there someone to do the talking for you? Type it out and let them read it to the neurology department contact. Be on another phone to listen in if possible. Or put the phone on speaker to hear.

My primary care givers office has a social worker that got assigned to Larry and I. Do you think you primary guy does as well? Maybe the hospital. The neurology department I dealt with at the hospital gave me a social worker as well to help me with information.

[Motts in reply to Hidden]

I wear the hat of the patient this go around - and you are helping me find the correct words THANK YOU. I have my answers in my hand now and will be asking my cousin if she is up for a drive to Missouri when the time comes (if I cannot find anything in Illinois). My son was in a teaching hospital in Missouri and everyone was wonderful there.

[Hidden in reply to Motts]

Happy to help. Everyone here is more than willing to share anything they know or experienced.

[Motts in reply to Hidden]

Jeff that is why I am so happy I found this site. Sure wish I knew about it when my mom was diagnosed with PSP years ago. I have learned so much reading comments from others. It is truly a blessing. Thanks again - knowing the correct words to use saved the day.

[Kevin_1]

Could CurePSP help?

Waving warmly

Kevin

[Motts in reply to Kevin_1]

I have difficulty figuring out the site - I guess it is time to ask my computer whiz grandson for some help. Geez why did I not thing about that before????????? Sending Hugs - Granni B

[Kevin_1 in reply to Motts]

Well this might get you going:

psp.org/ineedsupport/center...

Or telephone them?

Toll-Free: 800-457-4777

Phone: [phone] (CURE)

I hope they are of some help.

Maybe other folk here can make specific recommendations.

However as Jeff says any decent movement disorders clinic should be up to speed on this.

Good luck.

Waiving

Kevin

[Motts in reply to Kevin_1]

Thanks again Kevin - you have guided me towards the answer to my question. I know feel prepared . . . and I won't have to ask my grandson for help. YEAH!!!

[Kevin_1 in reply to Motts]

Chuckling - Great

Promise not to throw axes at him too

[Motts in reply to Kevin_1]

The axes should arrive next week - a dear friend is ordering them for me (she can not wait to play) and she is also ordering Tim's The PSP Chronicles - At this point I am more excited to read the book than throw the axes.

My grandson does not see humor in my ax throwing giggles nor does my granddaughter but her boyfriend does so I think she will join in the silly funny business.

Have you found some ax holsters for Liz yet? I have not told my son yet - will let you know if he finds some.

[Kevin_1 in reply to Motts]

Reminds me - I told Liz your tales and she gave a smile and a thumbs up.

Nope - no holsters - She reckons s good javelin will reach either end of the homes living room with better accuracy. I said, "Such a shame you can't throw one." She mouthed, "Launcher." And added a big grin.

Your great... attitude wins! LOL

Keep me informed please.

Waiving warmly

[Motts in reply to Kevin_1]

When I started this silly throwing ax talk with my husband little did I know it would bring some smiles and giggles across the sea.

I think a glow in the dark launcher would be perfect for Liz. Please give her a hug from me and tell I will keep my eyes open for one that makes a giggling or growling sound when thrown.

[raincitygirl in reply to Motts]

Granni B, you are hilarious!! 👏👍

[Motts in reply to raincitygirl]

Thanks RainCityGirl - Believe me I try. . . and I love your name - When it storm I sit on the porch and enjoy, Sending Hugs to You - Granni B

[LuisRodicioRodicio]

Could The Smart Patients Team [[e-mail]] help?

Smart Patients, 144 S. Whisman Road, Suite G, Mountain View, CA, 94041, United States

smartpatients.com/conversat...

Hugs.

Luis

[LuisRodicioRodicio]

Hi Ribbie-3!

I see that your incorporation into chat is recent.

I hope it does not seem wrong to send you some small notes that I have been taking about the development of my wife's PSP-RD, with the hope that they may be of use to you.

A hug, courage and luck.

Luis

[Motts]

Luis Thank You - I shared the last information you sent with my husband too. I like the way you documented her signs by year. I wish that I had done that with my mom years ago - now all I have is my memory and I can not remember what came the first year or the second - It took years for her to receive her diagnoses of PSP. Luis, she was so happy when she got the name PSP - even though there was no treatment or cure. I was puzzled and asked, " Why are you happy?" She explained that she had felt some folks thought we was just making her illness up in her head and now she could say, "I HAVE PSP." Sending Hugs - Granni B

[Donnasue1]

Dear Ribbie, I would check the neurology deptartment at Washington University in St. Louis or go to the University of Chicago, they have studies and clinical trials going on.

[Motts in reply to Donnasue1]

Thanks DonnaSue - Wash U is excellent. I have a young friend who works there. Hugs to You - Granni B

[Pavaga]

Granni, send me your zip code and thru CurePSP I will do a search and send the results to you. Patty

[Motts]

THANKs Pavaga but Kevin guided me and I found it on the CurePSP site.

I am lucky to be close to some very impressive teaching hospitals that are just over the river. . . I HATE BRIDGES but oh well I did it before when my son was injured (he was flown into St. Louis University Hospital and they saved his life - I love everyone that has ever worked there). So I will find a way to do it again. I am just getting tired of having to challenge my phobias. Recently I had a talk with God about this very issue - the answer that popped into my head was WELL THAT's LIFE! Sending You Hugs - Granni B