PSP Clinic

[Khartt]

We went for our first time yesterday to a PSP clinic in Dallas TX at UT Southwestern. (Their movement specialist diagnosed Steve back in Jan with PSP)

Wasn't sure what to expect, but thought I'd share what it was all about. Basically it is a chance to see their team of specialists all on one day. We were put in one exam room, and the doctors rotated through. We saw a neurologist, speech therapy specialist, and a physical therapy specialist . We will be scheduled to do this every 4-6 months to check on progress and to make sure we have the best care team around him, and his needs are being met.

What we came away with:

I feel confident we have a good team of care around him. He will continue to have PT and OT, adding speech therapy. They also ordered a swallow study to be done. His decline is evident, and someone else was able to talk sternly to him about safety! (46 falls so far this year)

I got the name of someone I can call locally for support, that was good.

Two of our grown children were able to meet us there and attend the sessions with the doctors, which I was grateful for.

So, this morning starts another day in my life as a caregiver! I'm thankful to have you all out there (and I told the doctors so---and they knew of this forum). I'm also thankful to have access to excellent PSP doctors. If anyone out there is within reach of Dallas, I would recommend UT Southwestern for care.

Sun is coming up, I'm off for my morning walk!

Karen

[kenh1]

Wow! What a good system. It gives you chance for expert consultation but also gives the neurologists experience of a disease they are not going to see very often. Gains on all sides.

[enjoysalud]

How fabulous is that, and I appreciate you sharing.

I live in Los Angeles. I have a healthy sister who lives in Austin. I lost my 55 year old son to PSP last May 4, 2017.

Is your health insurance thro U of Texas Southwestern? Something like what you describe would have been comforting for me. My son had access to a speech therapist, physical therapist, etc, thro his Kaiser Insurance, but the appointments were on separate days and locations. He did not get a PP DX until three full years past his Parkinsonian DX.

[Khartt in reply to enjoysalud]

All of the therapy is done through a home health company, so they come to us. It first was paid through Blue Cross, but now he is on Medicare. The doctor writes orders for the therapy. We have to drive about two hours to Dallas, but I don't mind in order to get expert care.

[enjoysalud in reply to Khartt]

Oh.....my son was too young for medicare. In fact, while working with Los Angeles Unified School District as a math teacher, his health insurance was employer paid. March of 2014 his first symptoms appeared. By the end of 2015 he had to apply for disability thro CalSTRS. There was no health insurance with CalSTRS disability. He now also had a deadly pre-existing condition. We had to go thro the ACA. No one else would give him health insurance. Fortunately, Kaiser Permanente list themselves (Bless them a hundred fold) under the ACA. My son was paying close to $600 a month and the benefits were not as good as when the employer was paying.

I just read in today's Business section, page1, of the Los Angeles Times (8/3/2018) that "20 Republican-led states are challenging ACA (Obamacare) in federal court, demanding that the law's protections for people with preexisitng conditions be declared unconstitutional" . My son was also a professional bass player and had enough quarters to qualify for medicare.....the problem he was that he was too young for medicare. I am grateful that he was not faced with those issues. I hope those who live in countries (Canada, UK) where the health system is more equitable are appreciative.

I am happy for the PSP clinic that you get to use. I hope that soon we will have some medical options to address PSP.

Blessings......

[raincitygirl in reply to enjoysalud]

Margarita, I am appreciative (of Canada's system) and for treatment of cardiac, cancer, births, emergencies and traumas, children etc it seems second to none. However....treatment of neurological degeneration? I was frankly appalled that in a city the size of Vancouver, my husband could only get to a tertiary neurologist at the University every 14-16 months. And no team care, no PSP specialists - just your GP for any issues that arise. No funding for equipment... I guess the takeaway is that every country needs to do something to improve their health system......

Anne G.

[enjoysalud in reply to raincitygirl]

Anne, I am happy to hear from you, and very grateful that I know what you look like.

In this country (USA) you get what your insurance will cover, and the rest is out of pocket. Remember that Jeff paid out of pocket for an appt at UCLA because he at first did NOT accept his Parkinson's DX. After the PSP DX (three years later) we wished it could have been PD. People who can afford more for their insurance get better coverage and access to better experienced MDs.

Los Angeles is a mega city, huge, and with many wonderful universities inside it's city, but yet with Kaiser Permanente (HMO) there was (who knows about now) no PSP specialist. The general neurologists, most were new, had little experience with just generic Parkinson's..... let alone other neurological diseases. I know that Christine47's insurance is with UCLA (my alma mater) and they seem to have many more specialist neurologists.

I will say this, I do GREATLY appreciate the kindness that Jeff received from his doctors, and realizing that there is currently no medication(s) for PSP It makes the lack of PSP specialist easier to accept.

I have medicare.........but I chose Kaiser Permanente as my insurance provider. Because I am now under Medicare, each year I am allowed to switch insurance providers..just realized that if I get a NEURO disease, it will then be pre-exisitng and I may not be able to switch....oh well, I have lived a long time.

Have a good weekend

Blessings, Margarita

[raincitygirl in reply to enjoysalud]

..and may you live many many more, and disease-free Margarita: You've had more than your share for a lifetime

XXX

Anne G.

[raincitygirl]

I'm impressed with Dallas' system! It makes so much sense for treatment of this disease, and to get that every 4-6 months is awesome!

Keep up the good work

Anne G.

[LuisRodicioRodicio]

Hi Karen!

Information, method, courage and luck.

Reproducing the phrase of Anne Heady (active participant in PSP-HealthUnlocked):

"Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"

Big hugh.

Luis

[Marilyn_cbd12]

Karen,

What good news that you have the UT Southwestern movement disorders clinic as a resource! My 73 year old husband (CBD condition for 12 years) was seen initially at the Mayo Clinic in Rochester, Minnesota and they were great at giving you a syllabus and moving you through appointments and therapies. However, he can't travel there comfortably any more and so we've been consulting a neurologist at Emory University's Movement Disorders Clinic in Atlanta, which is only a five-hour drive away. Problem is, though, that Emory's clinic is just swamped, and neurologist can only give him an appointment every 10 months or so. More recently, he has been getting his care at the Veteran's Medical Center in Charleston, SC, and the VAMC has been awesome at providing resources and appointments for him. Sadly, I think he is reaching a point of diminishing returns, because his condition right now is one of serious disability (this winter, he developed muscle rigidity in his neck and can't move his chin very far off his chest or to the right or left- tried Botox injections but that made it worse). Will see Emory neurologist next week just to see what they think about his status.

College football will be starting soon, and watching that will be something he will enjoy, from his recliner. Hope Texas has a good season!

Best,

Marilyn

[Khartt in reply to Marilyn_cbd12]

Wow 12 years, you guys have endured a lot for sure, sounds like he had a young onset like Steve (he just turned 65) and I think we're about 5 years in.

Yes, we too are looking forward to football season... are you in SC? I'm originally from NC, we try to get there every 4-6 months.

[Marilyn_cbd12]

Hi, yes, we are in SC- just south of Charleston, but have a daughter in Asheville. Onset for my husband was age 60. Cognitive symptoms were most prominent in early years; there was a one-sided tremor, some stiffness and lots of muscle spasms, but we sought medical evaluation mostly because of the cognitive and behavioral changes. He was scoring in 98th percentile on those tests that they give you, but having increasing trouble with executive function and everyday thinking tasks. On the football front, he and I spent our college days going to Ivy League games, but once we became "grownups" we embraced Notre Dame, Pac 12 (he did some graduate work at Stanford so some loyalty there) and Big Ten games. However, after we moved to the Southeast it became so much more fun to invest our time and energy in SE Conference games

I envy the "meet-ups" they have in England. Because of HPPA laws, doctors here can't tell you names of any other CBD patients with whom you can compare notes, so this website, when I found it two weeks ago, was a godsend.

Waiting for sun to come out again here,

Marilyn

[Khartt in reply to Marilyn_cbd12]

My email is [e-mail], feel free to write anytime. It's a tough road, I'm so glad to have found this forum. Charleston is on our bucket list, hope to get there this next year!