US Paralympics at SRNA 2013 Camp

I was so pleased that my out-of-the-blue call to Sandy in March 2013 paid off. As member of SRNA, I receive the quarterly newsletters and opened up the Jan. 2013 edition to see a picture of participants from the 2012 SRNA Family camp. In addition to having TM since 1972, I work for U.S. Paralympics (www.usparalympics.org), a division of the United States Olympic Committee, and I knew our organization needed to reach all those attending the camp – participants, parents, siblings and medical staff – in to order to assist with an introduction to adaptive sports. With U.S. Paralympics’ participation at the Camp, we’d be able to share information about the Paralympic Movement and our Paralympic Sport Club network that spans across the U.S.

Currently, there are 193 Clubs across the country and this number continues to grow each year. Paralympic Sport Clubs are community-based programs developed to involve youth and adults with physical and visual disabilities in sports and physical activity, regardless of skill level.  To find a Paralympic Sport Club near your hometown, go to https://findaclub.usparalympics.org. You can search the online database by location and click on a state or enter your zip code. Paralympic Sport Clubs are identified with the Sport Club logo at the top of the organizational profile. These clubs provide a variety of sport/recreation opportunities throughout the year. If after searching the database you find that there aren’t any adaptive sport opportunities near you, please reach out and let me know. U.S. Paralympics has many partners across the country including YMCAs and universities, so there still may be opportunities near you that are not currently listed within the Find a Club database.

In addition, Dr. Anjali Forber-Pratt also a member of SRNA, provided an engaging story on her focus and determination to become a Paralympian and world champion in wheelchair track. Check out this video highlighting Anjali’s accomplishments as an athlete, student and advocate for those with physical disabilities.

[youtube]https://www.youtube.com/watch?v=3nMcEwqVBSs[/youtube]

Although, I am not a Paralympian, sport has provided me many enriching experiences. Sport led me to graduate school for my second Master’s (Recreation Management); sport played a part in me meeting my husband on the ski slopes in Breckenridge, Colo.;  and sport also led me to work for the country’s leading sport organization, the United States Olympic Committee.

It was a true pleasure and honor to meet the families at SRNA Family Camp. There are so many opportunities these days for people with physical disabilities to lead a healthy and active life. I encourage the TM community to search out opportunities for sport and recreation and reap the rewards that come with being physically active.

Dawna Callahan
[email protected]

Are there guidelines for exercising when you have TM?

Many of my patients tell me that they don’t exercise because, “they don’t know what exercises to do.” This is a curious problem. On the one hand not exercising is a safe solution, after all, if you don’t know what the proper exercise is then maybe you will be hurting yourself if you push yourself to exercise, especially if you have a chronic condition like transverse myelitis (TM). On the other hand, if you don’t do anything at all, with or without TM, you are limiting your overall health. Over the years I have had many discussions with patients about this topic and have come to realize that the answer is difficult in part because getting regular exercise is hard work, fatiguing, time consuming, etc, for anyone, and often much harder for someone who has difficulty moving their body. Only 20.4% of adults in the United States actually met the federal physical activity guidelines in 2010. In fact, the CDC found that fewer than two in 10.

Americans get the recommended levels of exercise, and more than a quarter of U.S. adults do not devote any time to physical activity. Federal guidelines call for 150 minutes of moderate to vigorous physical activity every week, including two days of full-body strengthening.

Those guidelines are for the average healthy person, how does someone with TM interpret them? How much exercise does a person with TM need? There is clear evidence that the effects of TM can result in decreased endurance, pain, decreased walking stability, and make life tasks more difficult. In addition, there is rising evidence that exercise may have natural re-myelination capabilities.

However, the heterogeneity of the disease and the multitude of symptoms that accompany it make it difficult to determine concrete guidelines for exercise. As a movement scientist who studies exercise and its effects on walking and balance for individuals I have a vested interest in keeping up with the scientific evidence about this very topic. Based on the evidence that I am aware of most people with TM should prioritize physical exercise along with appropriate pharmaceutical medications.

It is important to have some flexibility in modifying the federal exercise guidelines to allow for more of an individualized plan. Changes such as exercising for shorter periods, planning rest breaks to allow for faster recovery from exercise bouts, and keeping core temperatures as cool as possible while raising your heart rate are all simple considerations that can make exercise more easily tolerated. The primary thing I suggest to my patients is that they should do whatever type of exercise they enjoy because the theory is that if you enjoy it you are more likely to prioritize it in your busy schedule. Since we don’t know exactly what types of exercise are most helpful to someone with TM, combining some aerobic and some strengthening exercise is ideal. Individuals with TM should be given more guidance on how to maximize their current energy levels and should seek out professionals such as occupational therapists (OT) who can provide concrete steps for managing or modifying daily tasks that have become more difficult. It is also important to consider the addition of technology, such as functional electrical stimulation, for strengthening the lower extremities or at least preventing further loss of muscle strength, and focusing more on the upper extremities for aerobic benefits, much of this can be learned from a good physical therapist (PT).

The health benefits gained from regular exercise are well known, from improving cardiovascular health, bone density, strength, cognition and emotional well being, to name a few. All of these should be a priority for people with TM but a primary problem still lies in convincing people to exercise, and to do it on a regular basis. For now, keep in mind that the evidence supports the idea that individuals with TM should be getting regular daily exercise. You can pick what that exercise is, keep it safe and enjoy it, your body deserves some movement time.

Kathy Zackowski, PhD, OTR
Kennedy Krieger Institute

Departments Physical Medicine & Rehab, Neurology
Johns Hopkins University School of Medicine

Fatigue and Transverse Myelitis: A Daily Fight With Exhaustion

One of the most common issues we hear about in our practice is fatigue.

“Doctor, by 10 am I am done for the day.”

“I don’t have the energy to do what needs to be done.”

“After work and on weekends, I just have to sleep.”

Fatigue is a pervasive issue in individuals who have been diagnosed with transverse myelitis and other rare neuroimmune diseases and often is responsible for large changes in lifestyle, family time and work schedules. It can be one of the most disabling issues that patients deal with, yet is often not addressed in an aggressive fashion. At our clinics in Dallas we take a three-step approach to dealing with fatigue.

  1. Understand the causes of fatigue in each individual (they are variable, but a few are most common).
  2. Directly deal with the underlying cause.
  3. Treat symptomatically if the underlying cause cannot be identified or treated.

What causes fatigue? A person’s energy level can be thought of like a household budget. Each person has a certain amount of money to spend in a day (their budget). Once the money is spent, that’s it – you are out of energy for the day, or you have to ‘borrow’, like using a credit card with a high interest rate (at some point you have to pay it back with a penalty). There are two ways to improve your spending: increase your income or cut unnecessary spending!

Why do patients afflicted with transverse myelitis ‘spend’ their energy money so quickly relative to other people? If a person’s walking or balance was affected by the myelitis, then each step – each and every step – COSTS MORE. Just getting dressed in the morning, one can ‘spend’ the equivalent amount of energy that another person would use in half a day! Thus, by mid morning, our patients may be out of energy funds! Thinking about walking is exhausting and the rest of the world takes it for granted! Hence, we look at each patient to determine why one is running out of energy too soon in the day. Here are the most common causes:

  1. Disorganized, too little or interrupted sleep (you need 8 uninterrupted hours per night). Getting up to go to the bathroom, snoring, disordered breathing, untreated nighttime pain, disruptive bed partner, annoying pets, late nights are all a problem!!
  2. Poor walking mechanics cost you more energy! Why did the physical therapist yell at you to stand straight and move each leg slowly and purposefully? Because bad mechanics may allow you to go quicker, but costs a lot of energy over the long run. WEAR THAT AFO if you need it! The brace makes walking “energy” cost less, hence you have more energy later!
  3. Medication side effects. Look to see if your medication for pain or spasticity is actually affecting fatigue and consider a trial of a different medication or treatment option
  4. Depression. Low mood can present in a lot of ways, including a sense of fatigue. Discuss this potential with your care providers.
  5. Unnecessary steps. Perhaps you should put your clothes out the night before, instead of looping your bedroom twice, just to get dressed in the morning!
  6. Underlying medical issue. Checking thyroid, B12 level and/or iron level may be indicated. These types of concerns should be discussed with your health care provider.

Recognize that a lack of energy doesn’t just make you feel bad, but has been associated with lower scores on cognitive assessments (documented by our very own Dr. Lana Harder in research studies). So how do you fix it? Ensure that #1-4 above are examined and treated if necessary. Your energy budget can be increased with better sleep, better diet and regular exercise. While exercise is an ‘energy expenditure’, over the long run it pays dividends and increases your budget!

In the end, fatigue is common, but treatable. The key is understanding the underlying cause and developing a personalized approach to managing it!

Ben-small~ Benjamin M. Greenberg, MD, MHS

My Transverse Myelitis Journey

It all started with a sharp shooting pain across my upper back and going up to my neck. Following that, I felt a tingling sensation running up and down my right arm, like ants crawling . It was uncomfortable but not painful, so I did not pay much attention to it. This feeling carried into the following week and my right arm grew weaker. I lost my appetite and also began to feel tired for no reason. I started experiencing pain across my shoulders at the back of my body.

I went to a specialist in the National University Hospital (NUH) thinking that it was a frozen shoulder. The doctor spotted a bone spur on my right shoulder through an x-ray and thought it was the cause. By the time my second follow up visit with him was due, I was dragging my right leg and when I reached the hospital, my right arm was limp, and my body was extremely weak. The doctor first thought I had stroke, but I was coherent and he ruled that out. He then suspected that something was not right with my nerves and I was warded and put under the care of the neurological department. By the next morning, after an emergency late night MRI scan, I was diagnosed with Transverse Myelitis (TM) with swelling from C3 to C5 of the spinal cord. I was given intravenous steroids and transferred to a high dependency ward to monitor my breathing and swallowing.

Within one week, I lost the function of my left arm too, my bowels and bladder functions, and I could not sit up or turn in bed anymore. I was sent to a step-down community hospital for rehabilitation and within 2 weeks, I lost the function of my left leg too. I was totally paralyzed, from neck down!

I was sent back to NUH and my spinal cord was found to be inflamed from C2 to C6, the lesion had increased!

While in the acute hospital, before and after my first relapse, there was a flurry of activities, brain scans, lots of blood withdrawn for tests, MRI, eye tests, nerve tests, lumbar puncture, etc. to diagnose the illness and subsequently the cause of the inflammation. If not being wheeled out of the room for tests, or if there were no visitors, I would be lying alone in the room, looking at the ceiling or at a small angle to the left and right of my head, as my neck had limited movements.

I could not press the emergency call bell, so my room door was left open, so that I could shout for help when necessary. However, even when I shouted, no one could hear me as my voice was hardly audible as my body muscles were so weak. I had excruciating nerve pain and non-stop spasms. While having spasms, my arms were turned inwards, my legs were straightened and my body seemed to be electrocuted with internal movements. I needed at least 2 nurses to shower me on a trolley shower bed, in other words, showered while lying down.

I was devastated, from a highly independent person, I became totally dependent on others  for everything, turning in bed, showering, feeding, drawing out my urine and cleaning me up after  I let go of my bowels, brushing my teeth, etc. I could not do a single thing on my own! I felt like a living copse! It was torturous to be trapped in a lifeless body.

I was overwhelmed with sadness but I did not fall into a depression as I knew I had to stay strong for my family’s sake, my husband and my 3 teenaged boys. However I am no superwoman. I did cry, not because I was wondering “Why me?”, but more so of the fear of the unknown, “What is happening to me? Can I recover? Is this temporary?” The fear came about because my family and I had never heard of TM before and the illness had no warning signs, I became paralyzed practically “overnight”. I believe everyone has heard of cancer, stroke, muscular dystrophy, diabetes, etc. But I doubt many know what TM is.

No exact cause could be pinpointed for the inflammation. Back in the NUH, after I had lost the function of my whole body, I was again given steroids; however it still did not work. Finally I was given a cycle of plasma exchange. About a week after the plasma exchange, two fingers were able to move a little and the doctors moved me to the step-down hospital again for rehabilitation.

There was no other medication to treat me other than the initial stage of intravenous and subsequently oral steroids. After that, I was given medication to control my spasms and treat my nerve pain. I stayed a total of 7.5 months in hospital.

Second Relapse- diagnosed as having NMO

Last year, in July, 2012 (3 years 8 months after I contracted TM), one morning I woke up feeling sick and nauseous and this continued for about two weeks. I could not eat well and during the second week, I started throwing up everything that I had eaten. I saw a general practitioner who thought I had stomach flu. It did not dawn on me then that I was having a relapse until one morning when I woke up feeling numbness on my right leg.

I was warded again in hospital and an MRI showed a relapse of the inflammation at C4 and C5 of the cervical region of my spinal cord. I was given intravenous steroids. I also received physiotherapy to help me stand and walk again. After a blood test was administered, I was diagnosed with NMO. To prevent future attacks, I am being treated with immunosuppressant, first starting with azathioprine, then oral steroids. I had to go for weekly blood tests to monitor my liver. After the sixth week, I had to change medication and am now on mycophenolate. I am keeping my fingers crossed that I will not go into another relapse.

It has been 4 years and 9 months since I first had TM.

Through intensive therapy, both inpatient and outpatient, I am now able to walk slowly for about an hour (still have balancing problem), feed myself with elbows supported by a table, go to the toilet, type with my index fingers one letter at a time, write slowly with a pen, and text message with my left thumb. I have gained back my bladder and bowels functions and am also free from spasms.

I have lost my deltoid muscles at both shoulders, hence not able to lift up my arms.  I still need help in showering and dressing. My neck is stiff, my legs are stiff, and my fists cannot be clenched properly.  I suffer from extreme muscle pains 24/7 at the shoulders.  I pant when I walk, talk too much or too loudly.

It was a tough roller-coaster journey and my family, especially for my husband, who went through a lot trying to look for information and support in Singapore, but the only information we could get was from the doctors.

I am fortunate to have the support of my family and friends. I am also fortunate to have received excellent medical care and therapy treatment to help me recover partially.

I now wish to help others by starting a Singapore support group and sharing my story, in the hope that others who are afflicted with TM will not feel so lost and alone in their struggles.

~ Carol Lim-Ng from Singapore

Back-to-School

As your child prepares to begin the new school year, it is important to make sure that his or her educational needs are met.  Demyelinating diseases, like TM, NMO, or ADEM, often present unique challenges to students and schools alike.  Because of the rare nature of these conditions, most school personnel will not be familiar with your child’s medical condition or understand his or her unique needs.

What does the law say about students with disabilities?

The Individuals with Disabilities Education Act (IDEA) is a federal law designed to ensure that public schools serve the educational needs of students with disabilities.  IDEA requires that every eligible student receive a “free appropriate public education,” which means that schools must:

  1. Identify and evaluate students with educational disabilities
  2. Develop individual education programs (IEPs) for these students and provide them with special instruction and services
  3. Maintain records, resolve complaints, and involve parents in decision-making processes.

Some examples of disabilities covered under IDEA include: autism; visual impairment; emotional, intellectual, or learning disability; or other health impairment (OHI) such as traumatic brain injury, epilepsy, or demyelinating diseases.  Students with TM, NMO, or ADEM may qualify under the OHI designation.

Section 504 is a portion of the Federal Rehabilitation Act of 1973 designed to ensure that children with disabilities have equal access to an education. While Section 504 does not require the school to provide a plan as comprehensive as an IEP, it may still grant the child access to accommodations.  In order to qualify under Section 504, the child must have a record of physical or mental impairment which “substantially limits” at least one major life activity (e.g., learning).  Determining qualification for services is completed by the school.  Please see resources list below for more information on special education and Section 504.

What types of services may assist my child in the classroom?

Given difficulties associated with cognitive, physical, and fatigue-related symptoms, students with demyelinating diseases may require support in a classroom setting.  Examples of academic support services include preferential seating, assistance with note-taking, extended time for assignments and/or exams, regular breaks, vision assessment/intervention (e.g., enlarged print), and assistive technology (e.g., laptop, dictation software).  Services to address physical needs may include providing an extra set of books (one for home and one for school), utilizing an elevator pass to avoid stairs, allowing extra time to travel between classes, providing a permanent bathroom pass, and adapting physical education activities. Social-emotional supports may also be needed in the school setting.  Such services may include counseling and/or in-service training for staff.

Guides summarizing information on TM and ADEM have been provided by Linda McCowen (blog post author), teacher and educational consultant from the Children’s Medical Center Dallas School Services Department.  She has created individual “School Guides” for TM and ADEM, which provide a brief summary of the medical condition and importantly, how it may impact a student in the classroom.  Of course, we know that every student is different and theses guides are not meant to suggest a one-size-fits-all approach.  Rather, this information often provides a useful starting place for families to share about their child’s medical condition and his or her needs.  From there, parents and the students themselves must advocate for the student’s individual needs.  Links to these guides are provided below.

How can I advocate for my child? 

Partnering with your child’s school early in the school year will be important when advocating for your child.  Regularly communicating with teachers and other school personnel is recommended to establish services as well as to monitor progress and the ongoing (possibly changing) needs of your child.  If needed, consider enlisting the support of your child’s medical team including physicians, therapists, psychologists, and/or educational consultants.  This can be very helpful for conveying information about your child’s medical condition.  It is likely that the school will require medical documentation so it will be important to collect this information and/or arrange to have it sent directly to the school.

What if my student is in college?

College students with disabilities are also protected under the federal law but there are some differences in accessing services between high school and college.  The Americans with Disabilities Act (ADA) extends coverage of Section 504 to the higher education setting.  Students with disabilities may qualify for academic accommodations (e.g., extended time for exams); however, unlike the K-12 setting, modifications (e.g., modifying exams) are not offered in higher education, as the student is expected to meet the same academic standards as his or her non-disabled peers.  Another key difference for students moving from high school to college is that the student, who is now most likely an adult, is expected to serve as his or her own advocate.  This means learning to articulate information about the disability and its functional impact.  In other words, the student must be able to understand and describe how TM or ADEM impacts learning and academic performance.  This information, in addition to documentation provided by the student’s medical team, will serve as the basis for accommodations provided to the student.  A common concern is related to confidentiality so it should be noted that disability records are protected by the Family Educational Rights and Privacy Act (FERPA) and are in no way linked to the student’s transcript.  For more information on ADA, see the resource list below.

Resources

School Guide for Students with TM

School Guide for Students with ADEM

For more information on special education services and the law, visit: https://www.wrightslaw.com

For more information on Section 504, visit the website for the Office for Civil Rights: https://www2.ed.gov/about/offices/list/ocr/504faq.html

For more information on ADA, visit: https://www.ada.gov

Visit the website of your state education agency

Authors: 

Lana Harder, PhD, ABPP is a clinical neuropsychologist at Children’s Medical Center Dallas and Assistant Professor of LanaPsychiatry and Neurology and Neurotherapeutics at University of Texas Southwestern Medical Center

 

Linda McCowen, BA is certified in Special Education and is a teacher at Children’s Medical Center Dallas.  She provides eLindaducational consultation to medical teams, patient families, and schools.

 

Nicholas Wignall, MA has a masters in Social Sciences and is a clinical psychology doctoral student at University of Texas NickSouthwestern Medical Center

 

Support R Us

I never really got behind the idea of support groups. I could see how they might benefit others, such as grieving spouses or recovering addicts, but I never thought it would be comforting to tell my woes in front of a group of strangers. In fact, in my mind, it would be discomforting. I didn’t want to listen to the whining and complaining and declarations of victimhood of others, and I didn’t want them to listen to mine. I guess I took my emotional cue from that astute observer of human behavior, Tony Soprano:

“Whatever happened to Gary Cooper?” he tells his shrink, Dr. Melfi, “The strong, silent type…he wasn’t ‘in touch with his feelings’ – he did what he had to do…once they got Gary Cooper in touch with his feelings, they wouldn’t be able to shut him up!. And then it’s dysfunction this, and dysfunction that, and dysfunction ma fangul!”

When I became paralyzed, I figured that I would Gary-Cooper my way out of it by force of will and refusal to whine or lay the blame on anyone but myself. I did it my way and after years of despair and confusion, it worked out okay. Only later was I asked to join a group of other transverse myelitis (TM) survivors in an occasional get-together at an independent living center in Orange County. I initially went out of some misplaced obligation, I guess, and since it was a long drive for me, often simply weaseled out of going altogether.

But then I saw the light. Last Saturday’s TM support group lunch-and-talkfest turned me completely around. It took seventeen years, but I finally got it.

The meeting, run by TM soulmate and chair user Cindy McLeroy, started out in much the same way – someone brought little sandwiches, someone else the macaroni salad and the hot dip, and we ate and kibitzed. First I was surprised at the turnout – 13 or 14 people with the disorder plus a couple of caregivers thrown in. Remember, TM is as rare as hen’s teeth, as they say back on the farm. There are maybe 1400 new cases a year in the US. Divide 316 million by 1400. It’s .00000-something.

The format of discussion was much the same as any such group: you go around the room and everyone tells their story, or an update on their story, and yes, there is plenty of ####ing about bad doctors and wrong meds and such. But beyond that – way beyond that – were a series of engaging, insightful stories by a group of engaging, insightful people who would never have met under any other circumstances. On my right was my good friend, Robert Slayton, a distinguished history professor at Chapman University. On my left was Rick Benson, the administrative supervisor of Mariposa County on the southern edge of Yosemite. A couple of seats down was Nicole Magner, a former Olympic-level competitor in the bobsled. I guess that if this were a board game, she’d be The Athlete. There was also The Librarian, The Nurse, and The Eighty-Seven-Year-Old Wonder Woman. It was a good group.

TM is a weird disorder – it attacks people in a hundred different ways. No one in this circle had the same clinical profile. But there were some common themes that kept popping up, themes that I had never fully grokked before then. Here are three:

  1. Pain. Everyone, those in wheelchairs and those who looked otherwise “normal,” had some variation of neuropathic pain, meaning pain that comes from damaged, unstable nerve cells, often in an area that is otherwise paralyzed. This kind of pain is often described as burning, squeezing, pinching, or pins-and-needles prickly. It’s hard for outsiders to know what you are talking about. Neuropathic pain seems particularly susceptible to the glib, “all in your head” diagnosis. Since it doesn’t have a direct source, like a broken arm or aching back, it must be psychosomatic. Change your attitude, so this dismissive thinking goes, and lose the pain. That is, in a word, a crock.
  2. The Invisibles. Those with TM whose impairment and pain is invisible – they don’t need wheelchairs, canes, or walkers – are the ones who face the greatest skepticism from outsiders. Looking at it from their perspective, it’s almost a blessing to have a prop like a chair to validate your condition. The Invisibles have to constantly explain and justify their behavior, like they were on trial for malingering. They are also the ones often challenged by self-righteous chair users when parking in a disabled spot. “Hey, what’s wrong with you, bud, you look perfectly healthy to me!” Never judge a neurological disorder by its cover.
  3. Fatigue. Systemic fatigue, as experienced by damn near everyone with TM or MS, is not “fatigue” in the I’m-all-tuckered-out sense, in the same way that clinical depression is not the same as feeling bad after your girlfriend leaves town. And as this group unanimously, and vociferously, agreed, persistent fatigue is the hardest thing to get across to the uninitiated. One lady, I think it was The Librarian, tried to explain to her teaching colleagues her chronic fatigue, and they just hooted and hollered. “Hey, join the club – we’re all exhausted from this job!” I get the same reaction when I tell friends that I take a daily nap. “Really? Boy, you’re living the life!” Even when I try to explain, it sounds like an elaborate excuse to goof off. It makes you want to scream.

Initially, I thought I’d duck into this TM whine-athon, down some pizza and lemon pie, and hightail it back to LA and the Dodger game. Four and a half hours later, I was in no rush to go anywhere. These fellow TM’ers weren’t there to cry in their soup. Unbeknownst to them, they were there to help me unburden myself from some unseen sources of guilt and frustration. I don’t like to cross Tony Soprano, but maybe if he had found a mobster support group and gotten in touch with his feelings, he wouldn’t have had to whack so many people to get his point across. But, then again, the next time someone blithely announces that “everybody” has pain and fatigue, I may, in Tony’s words, “do what I gotta do.”

~ Allen Rucker contracted TM in 1996 at the age of 51, and was paralyzed from the attack at the T-10 level.  Allen published a memoir about his life after getting TM; “The Best Seat in the House.”  It is now available in paperback.  As his memoir so brilliantly conveys, Allen is on a journey.  That journey has taken him into a life as a speaker and an advocate for the transverse myelitis and disability communities.  Through his many speaking engagements, his appearance on the Montel Williams Show, and as a contributing writer for ABILITY and New Mobility Magazines, Allen is raising awareness about transverse myelitis.  He is the author and co-author of numerous books of humor and non-fiction. “The Sopranos Family Cookbook,” one of three books he’s written about the Sopranos, was a New York Times #1 bestseller.  Allen is the chair of the WGA Writers with Disabilities Committee.  He lives in LA with his wife, Ann-Marie. They have two sons. Follow him on Facebook and visit his website for more information.

This blog was originally published in the Life After Paralysis blog series on the Christopher and Dana Reeve Foundation website. Click here to view the original article.

TIPS and TALES About Managing Pain…

Today I’m going to talk about pain. To be legal, I have to remind you that I am not a medical professional. NEVER stop taking a medication, add a medication or change anything in your medical regime without consulting your doctor. That includes over the counter meds.

Thank you Lisa and Laura for sharing these great tips in response to my first blog!

  1. Do your homework before a doctor’s visit
  2. Bring written questions
  3. Ask for copies of medical reports
  4. Have lists of your meds and available at appointments

I’ve experienced pain since 2001. There are times when months pass when I feel good and almost forget about TM. Sometimes several days will go by when I experience a high level of pain. I tried keeping a diary to see what triggered pain. Food? Weather? Stress? I never could figure it out.

I take pain medication, both narcotic and non-narcotic; Morphine, Lyrica and Cymbalta, and supplements for constipations.

Sometimes I think dealing with pain meds is worse than the pain. The large signs in the pharmacy window that read: “YOU NEED TO SHOW PICTURE IDENTIFICATION WHEN DROPPING OFF OR PICKING UP A NARCOTICS PRESCRIPTION”. Maybe you don’t want the woman who works at your company or just some busybody in line behind you to know you take narcotics.

Recently Walgreens Corporation has changed their policy. A narcotic prescription signed by your doc is not enough. Forget that you have gone there for the last 11 years and picked up the same one. They now have to call the doc’s office to verify the Rx. You better not show up Friday afternoon or you may be out of luck!

One of my friends, who is a criminal defense lawyer, told me that Walgreens has changed policy due to the increase in fraud cases involving narcotic pain meds. I get that, but WE ARE NOT THE CRIMINALS. We have a disease. Making it harder to get my meds adds another layer of stress. Because I need a pain med not a heart pill or antibiotic, why should I be treated like I’ve done something wrong?

Worse than the pharmacy are the pain docs. In 2009, I decided I wanted to try a lower taking a lower dose of medication. My treating physician told me he wasn’t an expert in that area and gave me a referral.

My first pain doc appt: Before I met him, I saw his assistant. Without much discussion he had me sign a narcotic contract, pee in a bottle and listen to a lecture about what would happen if I lied, cheated, etc. No kudos for attempting to lessen my dose. I then met the doc who was about 6’3” at least 250 pounds. (I’m 5’2”) Again without much discussion, he gave an Rx for a dose of morphine that was 25% lower.

When I went back two weeks later, I was still feeling shaky. He said I should go down another 20%. I wasn’t ready. I wanted to stay on the first lowered dose somewhat longer. His response – “I could refuse to give you any Rx at all.” I was a judge at the time and able to speak for myself. I felt like a kid at school who had broken the rules. He also said he had once taken narcotics and went off cold turkey. I found his demeanor menacing perhaps partially due to his size. I asked him if he was threatening me and he got angry. Luckily, my husband was there because after the tears came rage. Without him to calm me down, I might have been left without meds or been arrested for disorderly conduct or assault. We parted company.

My second pain doc appt: Started much better. I met him first and he even had worked with TM patients. I hardly saw him again. I met with nurse practitioners who changed almost monthly. We went through the narcotics contract; I peed in the jar, and was cautioned about lying, etc. The first couple months were okay. I slowly went down on my meds! Then a new nurse practitioner began our third session by yelling at me for missing an appt. (I hadn’t) and for lying about my meds (I hadn’t). When he finally realized I had neither missed an appt. nor lied, he never apologized. I never felt we established any rapport because of his failure to apologize and his accusatory manner. I continued there for a few months doing well! One month, I had pain almost daily and requested to go up 10 mg for a month and see how it went. He said no. We argued. I asked him for suggestions to deal with the pain in another way. He gave me none. End of Doc Two and pain docs for me!!

Luckily, I knew a doc at the VA who worked with veterans detoxing them from drugs, and while he couldn’t treat me, he agreed to advise me. I went back to my doctor and he agreed to help me using the other doc’s advice. I’m happy to say I went down about 60% where I remain today. I still hope someday to get off totally.

I could go on but I know you get the point. I know there are wonderful, compassionate medical professionals out there. My primary care doc and neurologist couldn’t be better. But there are also ones who for whatever reason, burnout perhaps, treat us badly. And some of us because of geography or medical plans have few choices.

No more tales…..on to tips for today.

  1. Don’t throw narcotic drug bottles away until you take the labels off. Burglars check trash.
  2. To avoid getting stuck without meds or having to go home to get them, keep a few extras in your car or office.
  3. Try not to fill your Rx on Friday. If you have to, the earlier in the week the better.
  4. Read the Rx before you leave the doctor’s office to make sure it has the right dosage, right amount of pills, that it is signed by the doc and has his DEA #.
  5. If you are going out of state and need to fill a narcotics Rx while you are there, make sure the state you are going to will fill it. On vacation in California, I found out California would not fill my Rx because it was from out-of-state.

Have any of your own tips and tales to share?  Email me at [email protected]

BarbaraMs. Barbara Sattler is on the Board of the Transverse Myelitis Association.  While a city court magistrate in Tucson, Arizona, Barbara contracted Transverse Myelitis. She took four months to recover before returning to work and was later appointed to the superior court bench. Barbara retired in 2008. Since retirement she has written a novel and has committed the publication’s proceeds to SRNA. She is currently working on her second novel.

Tips and Tales from Board Member Barbara Sattler

Hi to all you who have won the rare neurological disease lottery!

This is the first in a series of blogs where we will discuss medical tips, share medical care horror stories and come up with ideas to help SRNA raise money.

I’m not a medical professional nor have I played a doctor on TV. I am not providing medical advice. Check with your doctor before you change, add or subtract anything from your medical routine.

I invite all of you to send me your tips, which I will pass on.

  1. The most important decision you make when facing a chronic disease is to choose the right doctor or team of doctors. The right doctor should answer all your questions as many times as you ask. He or she should treat you with respect. Return your calls in a timely fashion. Encourage you to learn about your disease. Provide copies of medical records without hassle.
  2. To get the most out of a doctor’s visit, it is a good idea to bring someone with you who can listen to what the doctor says and be able to repeat it to you. When you are in crisis and/or pain, it is hard to comprehend everything you are told. You may be focused on one issue and miss other things. If the doc gives you unexpected news, you may not hear anything else!
  3. You also have some responsibility. Doctors respond better to patients who treat them with respect. Be honest with the doc. Withholding information out of embarrassment or any other reason hampers the doc’s effectiveness. They’ve heard it all. Realize the doctor’s time is valuable so don’t waste it. If you have several questions, write them down so you won’t forget any. Call if you need to, but don’t overdo it the calls or you may not be taken seriously when you really do need help.
  4. SRNA website has a list of doctors that have been vetted for knowledge, competence and compassion. If there are none listed in your area, check with support group members or other TM patients. Check with friends.
  5. I hate fundraising. When my son sold candy bars for Little League I’d buy them all. That said, we all want to help SRNA fund camp, research, and patient advocates! I belong to a book club that meets monthly. Each meeting, we donate $10 to a cause chosen by that month’s hostess. Other groups could try the same thing.

Next column I will focus on things your doc should have told you and didn’t!

Don’t forget to send me your tips and ideas! My email address is [email protected]. First tip will get an autographed copy of my novel, DOG DAYS!

A quick plug – I have recently written and published a novel DOG DAYS, which is about relationships between men and women, mother and daughter, lawyers and clients and people and dogs. Follow Kristin’s journey as she goes to prison after pleading guilty to a crime her boyfriend commits. After she’s released, she works at The Dignified Dog, which provides obedience training and dog daycare and is run by a psychic and animal communicator. Suitable for older teens as well as adults! All proceeds from the book go to SRNA. It’s available for $9.99 plus postage on Amazon in paperback and Kindle. If you want a signed copy, contact me at the email above! Looking forward to getting your tips and insights!

BarbaraMs. Barbara Sattler is on the Board of the Transverse Myelitis Association.  While a city court magistrate in Tucson, Arizona, Barbara contracted Transverse Myelitis. She took four months to recover before returning to work and was later appointed to the superior court bench. Barbara retired in 2008. Since retirement she has written a novel and has committed the publication’s proceeds to SRNA. She is currently working on her second novel.

Postal Glitches Impact SRNA in 2012

We want to make our members and supporters aware that for a few months in 2012, we experienced some delivery issues with our postal mail. It is unclear at this time if this is the result of post office negligence or improper activity by a person or persons.

This problem was discovered early January 2013. We were contacted by members who advised us that their check donations by mail were not cashed. SRNA investigated and learned that the United States Postal Service was delivering a portion of our mail to the wrong address due to an unauthorized change of address form. We immediately filed an incident report with the Postal Service. The problem has since been rectified and a formal investigation initiated to determine the cause. We have also notified law enforcement due to the uncertain nature of the incident.

SRNA acknowledges all donations with a thank you letter hand signed by the Secretary of the Board, Deborah Capen.  These letters are usually sent within a week of our receiving the donation.

If you or your friends and family members mailed a donation to The Siegel Rare Neuroimmune Association between September and December of 2012 and did NOT receive an acknowledgement from us, or if the donation check has not cleared your bank account, or if you have any concern at all about a donation made in that time frame please contact Sandy Siegel at (614) 766-1806 or [email protected].

We apologize for any inconvenience and thank you so much for your continued support.