Tilt-In-Space

In May 1997 I graduated from the University of Michigan, Flint with a Bachelor of Arts degree in sociology. I was diagnosed with multiple sclerosis six months later. I was 23 years old.

From the beginning, this disease was aggressive. Within a year of diagnosis, I had tried each of the three disease-modifying medications that were available at that time. Unfortunately, I continued having flare-ups almost monthly. I spent numerous hours receiving intravenous steroid infusions to combat inflammation.  At physical therapy I learned how to properly use a simple cane, but my MS was relentless. I quickly learned how to use a small-base, and then a large-base quad cane to assist me with my wobbles. When my wobbles became falls, my therapist recommended using a walker.

The walker was a practical piece of assistance, but I had a hard time accepting it. Keep in mind that I was a 27-year-old having to use a walker. It was ugly and I was too young. By 2002, despite everything I had done to slow the MS progression, I was no longer able to walk more than 25 feet and had to start using a wheelchair. I first went to a scooter, then to a power wheelchair, and finally to the more specialized powerchair I use now.

I’ve accepted the reality of using a these once-feared devices because I will not let MS beat me. In fact, I was using my scooter when I met and married my husband, Dan. The crazy thing is that Dan also has MS, and he still is able to walk and work at Central Michigan University. His job provided me the opportunity to pursue my dream of earning a graduate degree – a dream I had put on hold because of my MS.

I was accepted into the humanities program and began graduate school, but as I was trying to move forward and better myself, my MS progressed. I became too weak to adjust myself in my chair to relieve the pressure that comes with sitting in the same position for a long time. I kept complaining about pain. When I saw a doctor, he said a phrase I’ve come to despise almost as much as multiple sclerosis: “Well Jennifer, no wonder you are in pain. It looks like you have a pressure sore.”

Pressure sore. Those two words led me to months of care.

I began treatment with Karen, a wound-care specialist. Lucky for me, in addition to treating wounds she is also a physical therapist. She treated my sore by restoring the healthy skin, but Karen also wanted to keep my sore from getting worse. Most importantly, she hoped to prevent me from developing future pressure sores. Karen started investigating a better wheelchair for me. Because I could no longer effectively shift my body, she recommended a tilt-in-space chair to help me redistribute the pressure. With it I could remain as independent as possible and keep any new pressure sores from developing.

Karen – along with many other wound-care, social work and medical equipment specialists – did a phenomenal job filling out oodles of Medicare forms to help me get my new, more customized power wheelchair. Since I got this tilt-in-space chair in 2011, I can sit comfortably, have had no new pressure sores, and remain on the go — staying active in my community and achieving my goal of an advanced degree. In May 2013, I received my Master of Arts degree in Humanities with a focus on disability theory. This disease won’t beat me. I will keep moving.

 


 

Jennifer and nearly 300 MS activists will be on Capitol Hill next month asking their members of Congress to cosponsor the Ensuring Access to Quality Complex Rehabilitation Technology Act (S. 948/H.R. 924). This bill would create a separate benefit category under Medicare for complex rehabilitation technology, protecting access to customized products so that people with more advanced disabilities like Jennifer can have their medical needs addressed and remain independent. Email your members of Congress and ask for their support today. #complexrehab #MSactivist

 

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Jennifer

Jennifer Digmann

Diagnosed with MS in 1997, Jennifer Digmann and her husband, Dan, who also has MS, maintain a nationally-recognized blog, regularly guest post for Healthline.com, have served as speakers for many MS events, and co-authored the book Despite MS, to Spite MS.

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    18 Comments

  • Elys Bank   Feb 28, 2014 4:13 PM
    You are handling this all with dignity and grace. You are an inspiration. I'm coming up to my one year diagno-versary. I hope I am always as strong as you are.
  • Rebecca Kuchar   Feb 28, 2014 4:19 PM
    You are such an inspiration!!!
  • brenda brabson   Feb 28, 2014 4:30 PM
    i know how u feel i have been there. i have had ms since 1982. my doctor says i have secondary progressive. but i thank god that i can still talk, see, & move a little in my seat. I'm unable to walk. god bless u.
  • Joanne   Feb 28, 2014 4:34 PM
    Thank you for sharing your story. I was diagnosed in 1988. I am lucky as I can be with RRMS. Although I do not use assistive devices, I appreciate your views and overcoming hurdles to stay active. Stay positive and please keep sharing your stories. They inspire other MS patients to beat this disease.
  • Angela Macchiarelli   Feb 28, 2014 4:39 PM
    God Bless You both................you are very inspiring!!!!!!!!!
  • Avatar
    Cynthia-D  Feb 28, 2014 5:06 PM
    You go girl! I am brand spankin new to MS, in fact I've yet to see my second opinion doctor. So I can only imagine what lies ahead. So you know, stories like yours is certainly sad and concerning, but at the same time your will and spirit fly high and bring such an amazing inspiration to others. I hope you and Dan are doing well. I will now keep you both in my thoughts and prayers.
  • Sarah   Feb 28, 2014 5:38 PM
    OMG, your story started just as mine did. Graduated with my Bachelor's in Sociology, five months later at age 23, I had my first symptoms.
  • Nancy Bergstrom   Feb 28, 2014 5:41 PM
    Using forearm crutches makes life workable for me. I cannot walk fast or far but I can get around and they are much more maneuverable that a walker and easier on the arms than crutches or a walker. The arm brace part makes a huge difference because I have hand and thumb arthritis - keeps my hands happy and not overused.
  • kwec7744  Feb 28, 2014 5:57 PM
    You are an inspiration Jennifer, my best wishes go out to you and Dan. An understanding husband or partner is a considerable help and comfort in this MS battle. It has been for me during this 40 year battle. My best wishes to you both. Ken Collins.
  • William Routh   Feb 28, 2014 6:06 PM
    It is people like you that I ride in the Tour To Tanglewood. I am the oldest rider. This was my 3 year for that award. Last year I was able to ride wearing the number 7. I even raised more money and will wear number 8. I will be 83 before the ride.
  • Shannon   Feb 28, 2014 6:19 PM
    Have you heard of Dr. Terry Wahls, and wahlsfoundation.com? She was also in a wheelchair after all therapies failed her. She did her own research, changed her diet to basically Paleo (no grains, sugar), 9 cups fruits/veggies a day, seaweed for iodine, organ meats and grass fed beef, etc. she eventually got out of her wheelchair and back to riding her bike. This type of diet seems to help many people with different autoimmune diseases. She has written two books to explain her theory, one is just coming out in March 2014. My theory is that it can't hurt to try it, right? Good luck!
  • Deirdre LoCascio   Feb 28, 2014 10:46 PM
    It's wonderful that you are not giving in or giving up! Staying as active as you can is so important. I've been living with RRMS since 1999, starting Copaxone in 2008. Fortunately it seems to be working well, however I'm always slightly anxious of what will come down the pike. It's inspirational to me to see how People who have become more severely effected adapt and modify and still thrive in their life. I wish you the best in your MS journey and hopefully we will all benefit from the new research that is taking place in the very near future. There will be a cure for this but in the meantime keep fighting and thank you for sharing. :-)
  • Cynthia   Feb 28, 2014 11:27 PM
    I tried to go on the Wahls diet for my MS, but it was too great a change for me. I have had MS since 1983 at the age of 33, but didn't get an official diagnosis until 2000 and didn't go on Rebif until 2009. I have fought assistance from devices such as canes, walkers, and wheelchairs, but now use them all in different situations even though I can still walk some. I too find Jennifer's story inspirational.
  • Rekha   Mar 1, 2014 8:56 AM
    Great to hear what is happening in USA we have a long way to go in Malaysia but we will let people know what MS is as I just started hydrotherapy and my physiotherapist is also a caring person. Thank you for sharing your story.
  • Anybeth   Mar 1, 2014 9:20 AM
    Alas, I wish I still had enough brainpower for education or work. But that's a different issue.

    I was diagnosed at 21, and, like you, quickly went downhill. The standard disease-modifying meds at the time didn't seem to touch my MS either. Fortunately for me, Tysabri got back on the market and has done very well for me. But the 2-3 years cost me dearly, though movement wasn't the most severely affected.

    A few months after diagnosis, my knees gave out one morning. In addition to steroids to treat the exacerbation, I wanted a wheelchair rental so I could live my life. Classes, shopping, etc. That neuro initially said, "You're too young for a wheelchair!" But age has nothing to do with it, ability does. The neuro relented but said he didn't want to see me depend on that thing. A bit later on a hospital stay ended in a physical therapist prescribing me a walker. Was happy to get a new neuro later, 'cause he was disgusted to see me using an assistive device. It's not bad to use whatever you need to in order to live the fullest life you can.

    Now own a fairly standard lightweight collapsible manual wheelchair and a rollator w/seat that folds like a standard walker. Wheelchair is black and chrome; rollator is dark blue with bright blue flames on the front bar. And I put fuzzy velcro across the brand-name and have a bunch of patches backed with the hook-side. Made it customizable!

    Walkers. I actually didn't feel weird when I first used a wheelchair, but I had to get over my "this is for old people!" prejudice when it came to the first walker. I think it's a good question: why are standard walkers so ugly? They look more "institutional" than most things in institutions! I think you'd be hard-pressed to find people who like the look. I seriously doubt there's any good reason for the standard to be so dull. Certainly standard wheelchairs look better. Granted, canes can have the same trouble. I really wish the gamut of standard mobility equipment looked more appealing.
  • LAURIE GARVIN   Mar 1, 2014 11:18 AM
    I see a separate doctor for my pressure sores
  • ellen   Mar 4, 2014 9:34 AM
    Instead of a walker, try a small shopping cart witg some weight in it. I push car with my left hand use standard cane in right hand. With bilateral support I've managed for about 6 years Of course have standard 3 wheel rollator also. I never use it. Good luck. ppms dx 1989
  • zeena-s  Mar 26, 2014 4:05 PM
    may God bless u both