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 bcsattler@gmail.com

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 bcsattler@gmail.com. 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 info@wearesrna.org.

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