Colorado Polio Support

Here are some thoughts on traveling with PPS. You can download it below, or view it in full screen mode by clicking on PPS Travel below.

A discussion between Dr. Marny Eulberg and Peter Way

A common problem as we age, is that doctors we know, and who have treated us well over the years are retiring or changing their practices.  We then have to find a new doctor and train them to understand us and our Polio.  Recently I reached out to Dr. Eulberg to evaluate how to proceed after my doctor changed his practice.  I will update this post as my journey unfolds.

Peter:

My doctor changed his practice, and now I’m also looking for someone who can be a family practice doctor and knows Polio.   I found the site below to help choose PPS doctors, and it seems like it’s a team of people. http://www.polioplace.org/living-with-polio/polio-doctors

Would you have any words of advice for selecting a doctor?

Dr. Eulberg:

I think the first question is “How important is it really that your doctor, whether that be a specialist or a primary care provider, understand polio?”  “How prominently in your life is your polio?”.  And then try searching out only those doctors that would be a better doctor for you if they understood polio.   The fact of the matter is that it is highly unlikely that people will find a doctor who understands polio or, if they do, the doctor will retire soon because the doctor likely graduated from medical school sometime prior to 1960!!  

The article from Polio Place is taken from a handbook for family and friends involved in the care of a person who has had polio. For some polio survivors, it may a take a team of people.  If we are just dealing with the effects of polio—the team probably only needs to be a physician who understands disability and devices available that will compensate for the physical limitations, and maybe a PT and/or OT AND a primary care physician of some kind. Those who had significant breathing issues caused by polio may need a pulmonologist to be a regular part of their team.  But….. since most people who contracted polio in the United States are now over 65 years, they are rarely a pure case of their polio anymore—so they may need someone to manage their diabetes, their COPD, their GI issues, their Parkinson’s disease, their mental health issues, and/or any cancer they may have developed, etc. 

It probably doesn’t matter, at all, that an ophthalmologist or dermatologist doesn’t know much about polio!    Nor the cardiologist unless you have significant respiratory compromise because of your polio, but the cardiologist needs to be educated by the polio survivor in regard to what kinds of exercise they specifically can or cannot do. Then a cardiologist or his/her team, that listen carefully and are willing to learn, can help find an exercise that a polio survivor might be able to do that will get their heart rate up.  I’m sure you can probably also think of some other specialties where someone’s history of polio doesn’t impact their care much.

Peter:

How do you perform realistic heart rate tests when you can’t walk fast on the treadmill?

Dr. Eulberg:

I had the same experience with cardiac stress testing, but I anticipated the challenge in advance and found out that the only form of exercise for which they have known “normals” is walking on the treadmill at a pace that will get a person’s heart rate up to at least 1.5 times normal. So I had to have the injectable “stress” test (which adds a lot more to the cost).  If it is really important to see how your heart reacts to stress and if there might be a blockage in an artery there are alternate ways to get that information.  It does require the physician’s office/physician and the patient to ask the right questions in advance and minimize surprises and scheduling challenges.  There are other issues such as someone who cannot stand to transfer getting on and off an exam table or a woman standing to get a mammogram, etc.

It probably is most important for the primary care provider to be willing to learn and develop some understanding of how polio affected each of the patients under their care (as you implied —no two polio survivors are exactly the same {some have involvement of their arm(s); others their leg(s); other their trunk/backs}. More important than the specialty of the primary care provider (whether that be internal medicine or family medicine) is their willingness to listen and learn and a basic sensitivity to a person’s needs.  As we age over 65 a geriatric physician practice might best meet the needs of a polio survivor.  Generally, geriatricians schedule more time for each appointment, can deal with multiple problems all occurring in the same person at the same time, and pay attention to things like falling.

The only thing I can offer is that polio survivors may want to see me or a physical medicine/rehab doctor from time to time to get the issues related to their polio addressed and get advice about how polio may impact the care they seek from specialists.

Peter:

I’ve also thought about someone who specializes in Fibromyalgia, but I wonder if this would be a good idea since then, they might see all Polio issues through the same lens?

Dr. Eulberg:

As for the physician who treats fibromyalgia as a physician for polio survivors.  I think it depends on the physician—they may have learned to be a good listener because people with fibromyalgia often have significant psychosocial issues as part of their disease experience.  By training, many of the physicians who treat fibromyalgia are rheumatologists and their focus may be on sorting out the symptoms, and ordering tests until they can make a specific “arthritis-type” diagnosis and using the various drugs to treat the arthritis.  A rheumatologist might work closely with PTs and OTs but probably does not know much about various DME (durable medical equipment). 

I know it is frustrating for polio survivors that most healthcare providers know little or nothing about polio, but other than resumption of major polio epidemics in the United States I don’t anticipate that the overall situation will get any better (and I don’t think any of us want that!!).           

One other thought/recommendation would be for polio survivors to consider choosing a doctor of osteopathy, (D.O.) rather than an M.D. for their primary care physician.  Both D.O.s and M.D.s have similar training but the D.O.s get more education in their medical school training about how the skeleton and the muscles work and function together and generally are more in tune with movement challenges and how anatomical changes affect function.  We had both D.O. and M.D. physicians in our residency program at Mercy and then St. Anthony North and they finished the residency with essentially the same knowledge/medical competence but the D.Os seemed to just intuitively be in more in touch with musculoskeletal issues and what might help.  

Peter:

This is very useful advice, and frames the problem well:   Find a doctor who is motivated to listen and learn so that you can get some unique treatment for the whole person.  Fortunately, we can turn our attention to finding unicorns rather than a “Polio Doctor”.   Polio survivors are not exempt from all the joys of health management as we age.   We just get a bonus since we started out extra fabulous.

Finding a doctor who can spend time listening and learning is a challenge, since family doctors have a patient load of 2000 – 4000 patients per year.   Often, they see over 30 people per day.   New models of doctoring are emerging, with names like Concierge Medicine or Direct Care.   These physicians create a membership practice for a maximum 300 – 400 patients.  A membership fee costs $90 – $150 per month, but covers many more routine and preventive medical visits and diagnostics.   Such doctors can see around 6 patients per day – that leaves up to an hour per patient to get much more individual care.   The downside for patients is that these doctors do not typically take insurance or Medicare, so you may have to change your plan to higher deductibles or submit claims yourself.  Membership fees are not covered at this time.

You may not know that there is some great information for bracing for Post Polio situations.   This will help you select the best brace for your particular situation.   See it in our Resources section.

This article:  Post-Polio Fatigue    was presented at the Post-Polio group in Fort Collins.

It provides insights on fatigue and offers suggestions and resources to help.

 

The Rocky Mountain Post-Polio getaway will take place from August 19 – 23, 2018 at Rocky Mountain Village, Empire, CO.  

It is for Post-Polio survivors, caretakers, spouses and friends.   It will be for education, networking and fun.   With the Rocky Mountains as a backdrop, this getaway promises a welcome respite and individualized programs to fit each participant’s needs.

Full details can be found at:   https://goo.gl/ttCw75

Get your reservations in by July 15.