finding a PSP doctor

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finding a PSP doctor

Postby paddler » Mon Oct 13, 2014 9:29 am

Our journey has been 13 years so far. my husband is now 61. He has two sets of DBS to reduce the horrible shaking of his "atypical Parkinsons". He is supersensitive to most all meds. At the beginning, when we were assured by many doctors that he had PD, he never had any improvement from every med possible. I have seen reports on this forum of folks with PSP having bad reaction to anticholenergics. He was no exception. HE EXHIBITS MOST ALL of the CLASSIC PSP symptoms: falling backwards, vision issues, speech, and so forth, yet his DBS Neurologist insists "if he had PSP he would be dead." End of any discussion. He has done a reasonable job of reducing the horrible tremors.
We need to locate a Physician who will address his whole problem..or [refer to others in a PSP knowledgeable network] This piecemeal experience with ME, his wife being the primary purveyor of information, has to stop. I care for him 24/7. We have no others to help.
If anyone out there can give us a suggestion or list of physicians who are PSP care focused we would appreciate it. WE do not expect miracles , as this is not a fixable problem. BUT,I cannot tolerate piecemeal care any longer . He has worsened in the last two weeks terribly. Now his prostate is acting up and the urologist gave meds that caused acute panic attacks. He has a Catheter now. and at least for another week.

We live less than an hour from Baltimore. About the same to Philly. We are near Lancaster and York PA. His many surgeries were at Hershey Medical Center. The surgeries were successful. but knowledge of PSP not so much.
WE intend to donate his Brain to the foundation. I have even had trouble getting that to happen. We have been trying to complete our move to western North Carolina.
Additionally,it seems as if the people we read about on this forum in this situation never seem to have financial problems. Jim has great insurance, but our personal financial situation is in dire straights; We were professionals. Now, with no income to speak of, we are desperately trying to sell our home and farm and just at wits end with everything. People and relatives have said"oh. put him in a nursing home." We have no funds for such. The economy collapse robbed us. If we sell we might be able to survive. Thanks for your support. Finding a doctor will be a good start.
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Re: finding a PSP doctor

Postby boxcar9 » Mon Oct 13, 2014 11:54 am

I'm sorry you are having all these issues. YOU ARE NOT ALONE!

I don't even know what to say about the DBS. I have zero experience with that.

It sounds to me that your husband should be seen in a "university medical facility" by a movement disorder specialist to re-evaluate him and especially if he has never been to one. Sadly, expect a 3-5 month wait for an appointment--it will be worth it!

I am in the Midwest so I don't have specific physican recommendations to your area. And you won't find a primary care doctor that specializes in PSP that I've ever heard of. The trick is to find someone who is willing to educate themselves about PSP. Another "trick" I use when calling a new medical office is to ask "If this was your mother/father/sister/brother, etc with a rare disorder, who would you see at this office?" Many have changed their responses after I asked that question. Always start the phone call with "I need some help". People, in general, always want to help.

I do believe seeking medical professionals in university settings is imperative for any brain condition. (I have seen many posts here about Johns Hopkins and how wonderful they are.) Every time we have made a long trip to either Mayo Clinic or a university medical setting, it has been valuable for us.

I'm sorry that you think everyone here does not have financial problems. I think the opposite--I think those with funds are NOT on here as much. I am caring for my mother full time by myself (w/occasional help from my husband who is working 1 full time job plus 1 part time job to maintain us). My family either won't assist me or is not able to. If/when she goes to a nursing facility, her retirement money will run out in about 4 mos and it will be medicaid for her.

YES--it is daunting. and YES, you will need help at some point.

If your husband is only 61, he should be eligible for social security disability with very little wait period if any at all. A social worker and/or your local (county or state) senior services agency should be able to point you in the right direction.

AT THE VERY LEAST, CALL THE MAIN CUREPSP OFFICE--they will help point you in the right direction. 1-800-457-4777

I don't know where your DBS neuro is or who, BUT, for them to say your husband would be dead is inappropriate and inconsiderate and unprofessional, in my opinion. Doctor/medical professionals are like contractors--if they aren't being helpful anymore, it's time for a different one. They are human beings too and have faults just like the rest of us.

I know you are overwhelmed.

Please remember that YOU are your husband's BEST ADVOCATE and BEST HOPE.
YOU are the key to his care. It IS an enormous responsibility.

Any movement disorder is a vicious heart-wrenching disorder NOT only for the individual but for the family as well.
I know all too well, that for me, I am the center of my mom's care--NOT doctors or therapists.

If you've ever been to a conference or seen slides from conferences, you'll see a diagram of "patient-centered care" that shows a circle labeled "patient" in the center and then lines with circles leading out to other circles labeled "primary care", "occupational therapy" "neurologist", etc. BUT WHAT THEY HAVE FORGOTTEN ON THIS DIAGRAM IS A GIANT CIRCLE LABELED "CAREGIVER" THAT ENCLOSES ALL THE OTHER CIRCLES.

I am the CEO for "MOM, Inc." and it is my job to coordinate all the other people (including doctors) to motivate and ensure that they do their jobs for Mom.
Do I fall down at this??? YOU BET. I'm only one person. And it's really hard to be the CEO and the CEO of A** wiping at the same time. But, for me, getting QUALITY medical care is KEY.

Ex: Mom's primary care is a geriatrician at a university. It's a PIA to get to and the doctor's bedside manner is LESS than desirable--BUT the reason we stay is because the guy is VERY INTELLIGENT--He has tuned into things that her neurologist hasn't (who is at another university with top notch qualifications). Those 2 doctors DON"T talk to each other (as they are at different universities). I have to "manage" when one says one thing and the other says something else--guess who decides what to do--ME! But so far, this is how we get the best care for her. We also get "MORE" out of the doctors when they are in "teaching" mode than when they don't have students present at appointments. (AND, no matter what, be firm about asking for people with experience--they may not have seen PSP, but if they've seen parkinson's, it will be helpful. Otherwise, you are wasting time & insurance benefits.)

Also, utilize your local and/'or insurance pharmacist--they have a WEALTH of information regarding medication information that go beyond what you get off the internet. (I learned that OTC decongestants are pretty bad for seniors.)

It sounds like you may have complicated financial issues as well. My SIL spent $10K on elder law attorney fees. Try to get as much FREE information as possible from local seminars, etc. After a long complicated search, I discovered you can have an attorney issue a legal caregiver contract (in some states) that will allow your husband's money to pay you for caring for him (even if he is in a nursing facility there are are still "caregiving" duties that require time & effort). You have to be very careful with your assets if you even THINK about medicaid being a possibility.

What is the reason for a move to western NC? I would try to stay close to a metropolitan area with university medical centers if at all possible.

Be brave and know that our hearts are with you!
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Re: finding a PSP doctor

Postby JoB » Mon Oct 13, 2014 4:10 pm

It may be possible to get financial help from Social Security:

Here is an extract:

"Supplemental Security Income (SSI) is a Federal income supplement program funded by general tax revenues (not Social Security taxes):

It is designed to help aged, blind, and disabled people, who have little or no income; and It provides cash to meet basic needs for food, clothing, and shelter.

Am I eligible for SSI benefits?
This link will take you to the Benefit Eligibility Screening Tool. By taking 5 to 10 minutes to answer a few questions, you can find out if you are eligible for SSI or other benefits. (See also more detailed information on SSI Eligibility Requirements.)"

I have not used this system, so that I don't know how hard it is to work with the bureaucracy, but it is probable that it is worth at least one try.

Courage and good luck:
Joe Blanc
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Re: finding a PSP doctor

Postby zymurgy » Mon Oct 13, 2014 7:14 pm

Great responses/good ideas to your dilemma. And, no you are not alone, but I know it feels that way. Boy, thirteen years. Yikes! Money is an issue. As someone said, I don't want to be an old woman living under a bridge and eating cat food because all our money was used up taking care of my husband, yet I don't want' to leave any stone unturned to get help.

I don't know if this is helpful for you, but I looked up on Healthgrades and there is a doctor in Elkridge who specializes in neurodegenerative diseases. He got good grades on the site. will tell you more about him.
Specialty & Clinical Interests -- Neurologist: General Neurology, Movement Disorder, Neurodegenerative, Dementia & Geriatrics. I am sorry he is not affiliated with a university as boxcar9 suggested. We have the benefit of that. And use the tricks that were suggested.

Dr. Shawn Smyth
Parkinson Disease Ctr Maryland
8180 Lark Brown Rd Suite 101
Elkridge, MD 21075
(443) 755-0030 (Office)

I also used Golbe's PROGRESSIVE SUPRANUCLEAR PALSY RATING SCALE and STAGING SYSTEM. You can find a copy online. It helped me to establish our baseline. And I shared it with the doctor. Personally, I wanted to get as much knowledge as possible before the first visit. Although you probably already to this, I made sure every doctor (inc. dentist, ophthalmologist, PT, etc.) knew my husband had PSP. And I printed out what I found on-line relative to their practice and PSP. Many seem to only have a general idea of the condition. Also, I carry a copy of the Power of Attorney, just in case they are reluctant to talk to me due to HIPAA. I carry a list of his medications and supplements. (I am of the "Can't hurt, might help" school of thought.)

Good luck! I wish I could help more.
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Re: finding a PSP doctor

Postby paddler » Mon Oct 13, 2014 8:36 pm

thank you all for the incredibly fast responses.
ill try to address the issues you mentioned.
his surgeries have taken place at Hershey penn state university medical center. we have been in past years to U o f MD. [a farce] and even were sent to NIH!..they called it "parkinsonism" in 2009 after extensive review. sent him home.
before that we went thru the local doctor types like a stack of cards. when he didn't have good reactions to levodopa.. when we we didn't fit their protocals. or they would prescribe or overlap meds with almost deadly results..whew
he has been on medicare disability since 2008 . the first round of DBS was days after it took effect. we have a great secondary policy so he is covered nearly 100%.
we re mostly living on his disability checks. my small income is constrained because I cant leave him for long periods. I have rethought my small business to allow for more growth while still caring for him. yes ,i worry about being homeless.. it is a great fear. so much so that we have a tiny paid for RV. I could live in it year around in a moderate climate.[or go south in winter..north in summer. be safe . our property is for sale. once we are out from that we will have a major reduction in expenses.

um ok there is new news as of this afternoon . we went to the neurologist who manages his DBS. JIM is shaking much harder than ever he is hot. he is cold. clammy. just a mess. I sent a video of the tremors. the dr. had looked at it and thought the DBs was not functioning. when we got there he determined that th mechanicals werein order. his baseline tremor level has increased dramatically in th e last week or two. now th e settings can not be adjusted to reach the level that needs to be reduced.
he dismissed us . th e new urologist was told of his difficulties. sot of said to take th e flomax and see if ou can ee after another week.
now what?
they have called hospice. evindently hospice willcontact us. do I give up? is there someone out there who can do a different job of adjusting th e settings.?
is it the end. he is very good cognitively at th e moment, although we have seen him in worse nd also in better shape.
not sure what to do or where to go next.
does he have raging cancer? an infection? who will tell us.
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Re: finding a PSP doctor

Postby paddler » Tue Oct 14, 2014 11:51 am

when I told the bad report to our close physician friend, she said , I still think he is septic! you must find out. off we three, and our two service dogs between us as she is also disabled, went to the ER at Hershey. got there t 12 30 am in fog and rain. They did tests fo r everything! xray. blood. urine. by 3 am th e PA came into the room and said he does have UTI!! we cheered... much to the confusion of the PA. she said she had never seen such happiness over an infection.
we were up for 26 hours. I had requested 10 days before that the family meds folks culture th e original sample. They refused. I asked them to do blood work. and culture at the urologist. also blown off.
now we have traveled from despair to hope. he is already shaking less. we still need to find more complete care. But, thanks to the persistence of our friend who knew after many years in an urban ER, that in seniors, UTI doesn't always have a fever but DOES usually have terrible shaking, my husband may get a better quality of life back. It is a wake up call for what could happen if his tremors cant be controlled, however, and that isn't good. We wont discuss that right now.
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Re: finding a PSP doctor

Postby boxcar9 » Tue Oct 14, 2014 1:22 pm

Your persistence has gotten you somewhere! Congrats! (I know it's hard to keep it on full throttle all the time.)

When I am met by drs who don't know what to do, I have learned to do the following:





I'll even say "I'm NOT a doctor but if we put our 2 heads together I'm sure we can figure it out. And, please, educate me about what you think you should do and why. I'm here to learn too because the more I learn from you, the better caregiver I can be to my husband/mother/father, etc"

(yes, it's a little bit of stroking the dr's ego, but if it works, I'm doing it)
(I'M RIGHT ABOUT 70% OF TIME WITH THE UTI & understand that newer studies show that urine is not as "sterile" as once thought & that if you culture it & leave it long enough, something WILL grow)

______________________________________________TRUST YOUR INSTINCTS_____________________________________________________

This situation is similar to a situation I had with my mom over a year ago. I KNEW something was wrong, but nothing was showing up on tests & I couldn't figure it out--she just had a sudden decline of everything. Her fever NEVER went over 100 & bounced around quite a bit between 97 to 99 usually. STILL couldn't put my finger on it: UNTIL she developed an abscess (from a fistula that led from her colon to her vagina) that BURST one day on the toilet!!!

After, when they ran blood work, the geriatric doctor did a "CR-P" test that was OFF THE CHARTS. It was originally used for predicting heart problems, but is now used to measure overall levels of inflammation (infection) in the body. PRIOR to that he had done blood tests for tumor markers--which came back negative. He did those tumor marker tests because I kept telling him that I know something is wrong, but I don't know what.

The other test that is done on a somewhat regular basis on Mom is a SED rate. This also measures inflammation in the body.

With regard to the flomax, it is my understanding that it takes some time for that to work. My dad who has benign prostate problems was "self-medicating" by going on and then off of it and then when he took it on a regular basis, he had much better results.

Btw--if your husband EVER develops a fever over 101, I would say that is justification for the emergency room ASAP. (Since it seems our "PSPers" don't generally have fevers unless there is a BIG problem) Also, you don't EVER want to risk your husband having "SEPSIS" or becoming "SEPTIC" as I have been told by Mom's infectious disease dr that it is extremely painful and to be avoided at ALL COSTS! Your dr friend will probably agree.

Keep on going! :D
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Re: finding a PSP doctor

Postby zymurgy » Tue Oct 14, 2014 6:50 pm

There are tips in this TED talk you may find beneficial. The speaker is the wife of a PSPer. ... xsmu-2103/ A favorite line..."What fresh Hell is this?" reminds me of the ever-changing nature of this disease.
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Re: finding a PSP doctor

Postby Robin » Sun Oct 19, 2014 9:30 pm


Sorry you've had to join us here.

Apparently your husband's neurologist is not familiar with the research published the last 10 years on the various types of PSP, and how some can live for a very long time.

Has your husband seen Dr. Stephen Reich at the Univ of MD? According to Ed Plowman, a long-time member here, Dr. Reich provided excellent treatment for Ed's wife, whose PSP was confirmed through brain donation.

Brain donation is very helpful in atypical cases like your husband's. (Yes, living 13 years with PSP is atypical. Not impossible, however.) Which foundation are you referring to with regards to the brain donation? If you are referring to the CurePSP brain bank at Mayo, please contact me as a non-profit I started helps families make brain donation arrangements.

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Re: finding a PSP doctor

Postby paddler » Fri Oct 24, 2014 7:15 am

thanks to all for the kind replies.
robin - i have written to you directly in regard to the cu e psp brain donation. If you dont hear from me please advise.

as for U of Md , they are on the "out" list... we had a less than stellar experience there . After many otherr unsatisfactory experiences elsewhere I asked them if they would look at jims disease without demanding he go thru yet another round of levadopa related meds which by then had never worked. They assured us they would, and then immediately demanded he go on levadopa! I was furious, as the premise was that the records had shown for several years that levadopa was no good. my husband agreed to try again and then, uhen it didnt work they sort of thought he was just crazy. called in a psychivery atrist. we went down to be there for a 7 45 am appointment..which meant getting up very early.. we got there. and they let us chill until AFTER ONE PM. i was furious, hungry. they gave us no ..go out and get some breakfast as we will not be able to see you for x amount of time. i asked every 30 minutes . and they told me to just sit -in the windowless waiting room in straight chairs which were very hard for my husband to use for even short periods of time.
he finally stretched. out on the floor and they were about to call security this was like noontime after 4 hours of uninformed waiting.
we walked.

so our search goes on.
sorry for the delay in replying. we had another crisis yesterday. they had removed the cath on tuesday he finished the cipro. he cold no longer pee by yesterday. back to cath and more cipro. jim is calling for help..must go
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