Neuro recommendations ...MO and Al

[blackhill]

New here and new to the world of psp (husband has a recent and prelim diagnosis ). Anybody in either the St. Louis, MO area or the Gulf Shores, AL (probably Mobile or Pensacola) have a recommendation on a good neuro. Basically would like someone who is familiar with psp and thinks outside the box and keeps abreast with latest research . Guess that is a lot to ask! I assume you can message me on this site but if not, can provide email.

[abirke]

Sadly I welcome you.....Gladly I am happy you found this site. May I jsut say that YOU are the one who must be well informed. Do not expect anyone to know what this PSP is nor what what the patient needs ,. Once you enlighten your neuro, they will be able to become help your mate. You may need to switch neuro's.......don't feel afraid. avail yourself of agencies such as curepsp.org that will help you figure out what your mate needs. This will be YOUR journey. I am sorry but safe to say that noone else will be able to care for your mate like you. Be informed , be open minded and be ready to take care of yourself so that you will be at the best for your mate.

Good luck oh yah and Mayo clinic will know alot but I promise you curepsp.org has so many answered questions.....prayer is good too...don't deny your spirit.

AVB

[mthteach in reply to abirke]

abrike, thank you for those words. My mate ask his mom years ago if he could have a very expensive ring that was precious to her. She mailed it to him, and he gave it to me today. It brought tears to my eyes and heart that he had ask her for it for me years before he got sick. I will wear it with pride, and think about the love we had before this sickness took every thing away. I was so very mad at the world when he first got sick. I am having a very hard time taking over everything, and trying to go back to work full time just so we can keep insurance. My mother-in-law could not have picked a better time to hand it down. She is 89 and my husband is only 61. It has been hard for her to see him going down so fast like this. Thank you for your words of encouragement.

[vlh4444]

Welcome to this site although I am sorry you have had cause to join. I agree with abirke that it will be you who becomes the expert on this condition and you who will be the one who organises your husband's care. I do hope you find a good neurologist and I know that the system is somewhat different in the U.S. so you may find him helpful, knowledgeable and 'engaged' with your husband's care. Here in the UK I'm afraid we have not found the neurologists very helpful once the diagnosis is made.

The most effective support has come from our specialist nurse, the hospice and most of all this site. Do keep posting - you will get lots of helpful advice from carers and PSP sufferers.

Vicki

[NannaB]

As AVB and Vicki have said, welcome. We are in the UK so can't be much help with the neuro but apart from look at my husband and in the earlier stages, watch him walk, ours did nothing and last year suggested we didn't bother to see him again as there is nothing he can do and it was obvious that it was an effort for us to get there. Some have medication to help with symptoms but we have found that the side effects of the medication are worse than the original symptom they were prescribed for so my husband is now only on Glycopyrronium Bromide to try and reduce excess saliva. If your husband is still in the early stages, make the most of every day. Do things you have always wanted to do and live life to the full. If you miss this opportunity now, I'm sad to say, it will be too late. Prepare for the future, will you have to move to a more suitable property or make alterations to your home; wheelchair accessible wetroom, ground floor bedroom, wheelchair access to your property etc but don't let it take over your life yet. Eventually it will so enjoy this time while you can.

I hope you find all the help you need but I've found out most of what I know from here.

Best wishes.

Nanna B

[abirke in reply to NannaB]

Right on NannaB I especially like the thought of doing things you've wanted to do and prepare your living quarters for the future! Indeed!

AVB

[Amilazy]

No need to email separately unless private of course. Welcome to the PSP carers world wide info and support centre. I agree with what the others said, especially NannaB about doing planned things like travel now you will need good memories to help you through. Do not want to scare you but have a read of some of the posts over the last couple of weeks as preparation. Again not any help with US clinic as I am a Brit, but try and find one you can trust do not be afraid to change doctors better someone who empathises than a medical drug pusher. Best wishes Tim

[peterjones]

HI BLACKHILL HOWS IT GOING SO FAR MATE . I AGREE WITH THE OTHERS MATE IF YOU WANT TO DO ANYTHING DO IT NOW WHILE YOUR HUSBAND IS STILL ABLE TO DO THINGS BECAUSE WITH PSP THINGS CAN CHANGE SO QUICKLY OR SLOWLY THERE IS NO RHYME OR REASON TO IT BUT TAKE EACH DAY AS IT COMES MATEY HOPE TO HEAR FROM YOU IN THE FUTURE

PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER TAKE CARE LOOK AFTER YOURSELF MATE

[blackhill]

Thanks for the warm welcome. Just trying to read everything I can find. I have read a lot on this site and curepsp but have for some reason not able to activate on that forum. We have two different neuro appointments along with a lumbar (part of a research study) in the next month. Trying some supplements ...ubiquinol and b complex. The latter due to high homocysteine levels. Anybody else have that? Think probably had this for a few years but psp mentioned for the first time in May 2015.

[Christine47]

My husband's (dx 2013) neurologist is a Movement Disorders Neurologist. I "googled" that in St. Louise MO. I came up with neuro.wustl.edu/patientcare... I did the same thing for Gulf Shores. uab.edu/medicine/neurology/.... David G. Standaert, M.D., Ph.D. is the head of the department.

It is a place to start. Hope this helps. I can empathize with what you are going through. Breathe.

Christine47

[Hidden]

So sorry you have to join us here but welcome and you will find everyone here so very helpful, comforting, and understanding.

[Greenkerrycounty]

This is my first post. I'll be anxious to see if it goes through. I'm not sure if I have registered properly. My husband is only sort of diagnosed with PSP. Originally Parkinson's like most of you. I'll wait to see if this goes through to chat more. I'm proud to be in a group of such caring people

[blackhill in reply to Greenkerrycounty]

Looks like you got it posted!

[abirke in reply to Greenkerrycounty]

Your post has been recieved. Like I said to Blackhill, welcome. Please read all of these posts as if they were yours. We have all been where you are. Many are farther progressed and well we are all in difft stages. As I said to Blackhill, take care of yourself and as NannaB said go and do things that will create good memories with your mate....take that trip or whatever it is you two will cherish....and difinietly start planning your living quarters for the future.......the bathroom especially and areas with stairs.....bedrooms oh dear keep writing us we'll keep answering. Be prayerful hold on to joy.

AVB

[WinHowB in reply to abirke]

Thank you, abirke, You have given me a new mantra with my favorite power words. "Be prayerful hold on to joy." Copied on a postit to remind me.

[abirke in reply to WinHowB]

Aww I feel honored....well let me tell you I read B your post on how you came to your Dr. in MA. after 13 others and 5 years of search and research!!! He said you have to be your own doctor....and we try with those health changes and what nots....B is sympathetic to all we caregivers needs...as much as his apathy will let him be....an aside....he had a great day in the pool pt really pushed him hurray for Bruce!

Have a good day,

[NannaB in reply to Greenkerrycounty]

Received and read. Welcome!

Nanna B x

[Greenkerrycounty]

Thanks a lot. I feel like I just have a new group of friends with whom I have a LOT in common

[LynnO]

Washington university has a good neurology dept. Call the office and tell them what is going on. We saw Dr musiek the first time. Really liked him, spent almost three hours with us. The other two visits didn't not gp as well, but there are other drs in the group. It does take a very long time to get an appointment. We are still glad we found them,as the have been the only ones that seem to know anything about PSP/cbd. You.will need a referral from your Dr. But can set up an appoint!ent in the meantime. We live about 2 hours west of there, but my husband and I lived in Manchester for many years. Lynno

[blackhill in reply to LynnO]

Thanks Lynn O.......we have been to 3 neuros, one in St. Charles of which we will not go back to. One is with the SSM system and comes 2 times a month to our small town. ....Dr. kinsella . Liked. The other is with BJ.......she is doing a research project on early id of psp and other tau diseases so we are going back as far as her research project. ...Dr. Snider. Liked. Just wanting to make sure we end up in the right place to support us through this journey. Maybe we can keep each other updated as far as the support we find since we are in the same area.

We had been recommended to go to Dr. Sylvia Anawalda / Allawada ( not sure spelled right, would need to lookup again ) from Wash U but were never able to get in for an appointment.

[LynnO in reply to blackhill]

It took us 6 months to get the first appointment at Wash U. with Dr. Musiek, then the last 2 times it was 8 months. It's ridiculous how long it takes to see a neurologist. B has a very hard time riding in a car these days, causes a lot of anxiety, so the trip into St. Louis is hard for him.

There is a support group for PSP/CBD in St. Louis at the Altenheim nursing home on Broadway in the city. Beth Evans runs the group and her email is [e-mail]. I've not gone, I don't like driving in the city and they meet on Friday mornings once a month. I'm still working and it's hard to take off during that time.

Yes, it would be a good idea so share support contacts. Thanks!

We are close to the Hermann area, and there is not a lot out here.

Lynn

[blackhill in reply to LynnO]

Sorry....somehow missed your post and just saw this. I am familiar with your area as I work part time and go to Rolla quite a lot and travel down 47 some of the time rather than cutting through Chesterfield. We are north ....Clarksville.

[LynnO in reply to blackhill]

No problem!

We are currently trying to get an appointment with a neuro in Colombia who is supposed to be familiar with PSP/CBD. It seems you need a secret password and know the right people to even make an appointment. I'll let you know if we ever get in, if it was worth it.

We used to go to Hannibal quite a bit, it's really beautiful up that way.

[WinHowB]

It took my husband and I five years and 13 different providers before we finally got an appointment with a neurologist who had 'seen a case" of his earliest diagnosis, FrontalTemporal Degeneration/Primary Progressive Aphasia, nonfluent type. I was working from a article from UCLA I printed out - this was in 2008. It gave instructions for several rule-out diagnoses to pursue. Then we finally got an appointment with Dr Bradford Dickerson in Massachusetts General Hospital, Boston. Finally talking to a doctor who knew more than I did about the diagnosis! He is the one who confirmed the PSP with Parkinsonism diagnosis that has now "swamped" the other FTD symptoms. I totally agree that it is up to us to get educated and help the docs in the trenches keep up-to-date with the information that is now available. Attend conferences for caregivers and professionals.

I found really good info on the PSPAssociation.org.uk just recently. Husband appears to be in late stage. I find it frustrating that I am not getting guidance on the stages, I've had to find it by searching the internet.

Also by searching for information, we are using "complementary approaches" to getting healthy through altering lifestyle and measures to reduce brain inflammation. The result is a better quality of life for husband (and me), even as the symptoms progress inexorably.

It is a horrible disease and I am grateful to have found this site for sharing, comfort, resources, and personal stories from the trenches. Soldier on. Breathe. Pray. Keep a grateful heart. Hold on to Joy and Hope.

[blackhill in reply to WinHowB]

Thanks all for the thoughts and recommendations.....