For those who use three or four wheels for personal mobility, you might be interested.  I have recently stumbled upon a website that lists places of business utilizing the Google GPS Format for mapping cities and towns in the US and other countries, and showing places of interest such as restaurants, hotels, parks, etc. as a general locater. The website allows its members to locate different areas of interest, click on a specific place shown and see if it has been rated according to accessibility or not.  Currently, since the site is so new, not many have been rated.

How it works; you can join for free and give your own personal rating of places you have visited according to certain accessible categories; such as entrance, bathrooms, crowded or spacious, noisy, accessible parking, etc.  The website is “Source Dependent”, meaning places are not automatically rated, but if someone has visited and rated a place, it will show that person’s ratings.  That someone is a member who took the time to put their evaluations into the program and rated places they have visited.  If it is already rated and you visit the place, you can also give it your rating.  Things may have changed, or even improved, since the previous rating had been posted.

I invite you to first just visit the website and look around, watch the videos to learn how it works before joining.  If you are interested, join and help populate the data for others to see.  It will be a great help for out-of-town visitors or even “locals” who would like to go a place but would like to know if it is wheelchair accessible or not.  This is a non-profit organization and the site was designed by a fellow wheel user.

I personally think it is a great idea and have already started putting in my ratings for the area in which I live, and other places outside my area that I have visited.  You can also do it from your Android smart phone or tablet while you are there.  There is a comment section where you could rate an entrance a four star out of five but it has a three, four or two inch step entrance, or several steps, but the facility has a ramp they will put down for a wheelchair to gain access.  A short tutorial video is also on the website showing how actual people rate places.

Remember, the website will only work if people like us populated it with data.  It works anywhere there is a built in Google mapping capability, I think.  I’m still trying it out.  Those in the UK might try it also.  If you like it, pass it onto your contacts and friends.  (p.s. Able Bodied people can also join in on it).  If you are a member of other organizations besides SRNA, pass this information on to those who are members there with you.

I’ve been in a wheelchair as a paraplegic with one arm using a power chair for mobility since 1994 and could really have made use of this information when traveling outside my area.  I’m looking forward to lots of data being put in so others can use it in the future.

Happy wheeling; I’m off to see what I can rate with my I-Phone.

~ Bob Cook from Spring, Texas

Videos of the 2013 Rare Neuro-Immunologic Disorders Symposium Available!


We’ve got good news for all those who weren’t able to attend the 2013 Rare Neuroimmunologic Disorders Symposium! You can now view the first day of Presentations on our website! Please click here!

My Story Prompted Me to Start a Support Group

I volunteered to be a support group leader for The Siegel Rare Neuroimmune Association because of the need for awareness and support for our members and caregivers living with this condition.  I agreed to help as a support group leader because of my experiences and my story, which I am sharing with you.

On March 14, 2012, I visited my primary care physician with numbness in my feet and legs.  My primary care physician ordered an X-Ray and did not think it was anything serious to worry about.  However, on March 15,, I was completely numb from my waist down.  I could not feel anything below my waist.  I was scheduled for surgery on March 19 for other reasons.  I had been having many medical problems including internal bleeding, blood in my urine, hair loss, weight loss, and GYN problems.  All of the doctors treated my problems separately.

On March 15, my OB-GYN physician instructed me to go directly to the Emergency Room (ER) as he felt that it was something very serious and needed immediate attention.  Upon my arrival at the ER, the on-call neurosurgeon was called in to review my case and they thought that I might need to have emergency surgery.

I was very blessed that the neurosurgeon assigned to my case was very experienced with Transverse Myelitis.  He diagnosed me with Transverse Myelitis (TM) that night and admitted me to the hospital for further testing.  I did not have to have any type of surgery.

The doctors could not determine what else was causing my problems.  Therefore, one doctor said Lupus and one doctor said Sjogren’s syndrome.  Finally, it was determined that I had TM and Lupus.  I was treated with intravenous steroids, cellcept and hydroxychloroquine and a long list of other drugs.

I was also informed that my other previous medical problems were due to the TM and Lupus.  Therefore, my surgery that was scheduled for March 19 was cancelled.  On May 22, my neurologist informed me that my final diagnosis would be TM, NMO, Lupus and Sjogren’s.

I was so confused and did not understand all of this information.  My doctor tried to explain the conditions and took time to speak with me during my appointments, but it was not enough time to comprehend this new medical condition.  I tried to find local support groups, a medical center that provided support as well as other individuals who understood and had experienced such a rare disease and who could answer my questions.  There was no one locally.  I was able to connect with SRNA and find many of the answers through the website and other electronic information.  But there was not a physical local support group.  I had to answer my own questions through my research.  I spent many hours each day researching my medical condition and trying to find more answers.

My medical situation changed my life style completely and my family provided all of the rehabilitation for me.  I had to learn how to walk again as the doctors told me that I may never walk again or may only gain some mobility with restrictions.  I can now walk again, but I have my limitations.

The medication is hard on my system and I had to adjust to the severe pain and also had to limit my activities because of the rest I needed to get through the day.  Many people look at me as if nothing is wrong with me because I look so healthy; but what people do not understand is that I fight every morning to get started and fight every night to get to sleep because of the burning, banding and pain.

Therefore, I want to be a support for others so that they will have a local resource to call, meet and ask questions and also get help with understanding it all.  This is a very complex medical condition and it is very important that we provide the support to help others get the support and awareness that they need.

It is also important to me that people do not have to experience the long time pain and medical problems before they are diagnosed.  It is important to know that we can fight this medical condition together; but alone it can be hard and bring on other life-changing issues.

If you are in the Richmond, VA area, please contact me and I look forward to us getting together and forming a support group for these rare neuroimmune diseases.

Together we all can form the vision and provide long-term support and awareness.

~ MaLinda Washington, Richmond, VA


Life on hold: the experience of living with Neuromyelitis Optica

A research paper was recently published from the Northern UK NMO Service by Drs. Kerry Mutch, Abigail Methley, Phil Moore and Anu Jacob to develop an improved understanding of the experiences of people living with NMO.  15 patients from the Northern UK NMO Service were interviewed and five major themes were identified – diagnosis and treatment, symptoms, adjustment, identity and support. The authors reported that NMO is a difficult condition to live with due to the unpredictability of relapses and accrued disability of visual or spinal symptoms occurring with each relapse. Poor vision, reduced mobility, bladder dysfunction and pain affected participants’ independence and experience of living with NMO. Participants reported that during relapse and recovery they would ‘‘put their life on hold’’. They identified the importance of periods of stability to enable them to adjust to their condition and therefore aim for ‘‘normality’’ of life that they believed was comparable to their peers.

The study also outlined several implications for rehabilitation.

To read and learn more, please click here

Notes from the Southern California (SoCal) TM Support Group Meeting

The SoCal TM support group got together on August 24, 2013 at the Dayle McIntosh Center in Garden Grove, CA.  The Dayle McIntosh Center was gracious to let us use a large conference room for our meetings.

Fifteen people attended the meeting, 13 of whom were diagnosed with TM. One person drove from Bakersfield, at least a 150-mile drive, to join us.  Another drove 70 miles from Encinitas. It was a great meeting and we discussed some topics that were really interesting and opened at least one person’s mind to the benefits of a support group. The mix of people that attended ranged from a former Olympic bobsledder, a librarian, a college professor, a nurse and of course the rest of us that no longer work due to TM.  TM hasn’t stopped us from making the most out of everything in our lives.

Our meeting might seem long to those who don’t attend but at the end of four hours (yes, four!) people are still willing to stay.  We started the meeting with a potluck of great food, conversation and catching up.  Then we went around the group and shared our individual stories.  Some were new people sharing their stories and others provided an update.  Each person has a different story and each was diagnosed differently.  Each person is affected differently, some are in wheelchairs (me for one), some use walkers or canes and others are able to walk unaided.  Below are some of the issues we discussed at the support group meeting.

Pain We were all different in our pain and pain levels, but the discussion was lively.  Almost every one of us has some sort of neuropathic pain.  We talked about how this is such a hard concept for other people to understand.  How can we look normal and have this type of pain? How can we have no sensation and have numbness, but still have pain?  Many of us have experienced the attitude from others that “it must be in your head” so get over it. We discussed the use of medical marijuana for pain control.  Several people have tried it, some have issues with the fact it is illegal (federal government), and some that tried it found it to be a great help.

Fatigue Everyone in the group shared the experience of fatigue.  Not the kind of being tired, but the kind that will just suddenly come over you and you seriously need to lie down.  Many in the group try to push through it because of the attitude family members and friend have towards us.  We talked about how we hear things like “the job is exhausting for all of us, not just you…welcome to the club”.  When we can’t attend a family gathering, a get together with friends or just about any event because of fatigue, we are accused of just using it as an excuse.  Fatigue is something we understand as a group but have great difficulty getting others to understand.

This was not a gripe session positive influences come out of this wonderful group of people.  We have made some life long friendships.  We have gained understanding that we are not alone with this monster called TM.  We also share many laughs and tears.

We talked about depression and finding the right doctor.  Many of us have just quit going to a neurologist. We find that our family doc can treat our symptoms just as well.

Among many things we discussed, we talked about was what many of us called “invisible disabilities”.  Some of us are constantly challenged by the fact that we look normal.  What could be wrong with us, why are we using that handicapped parking space?  This is when using a wheelchair or a walker has its benefits.  We don’t have to justify that we are disabled.

At about 3 PM the group was surprised when Debbie Capen, the Secretary of SRNA and a Board Member joined us!  The whole group welcomed her.  Debbie and I started the group many years ago.  We worked hard before the first meeting and became BFF’s.  Debbie spent the night at my house and we got to catch up.

My thanks to Joan, Mona, Jan, Rick, Allen, Bob, Bill, Denise, Midge, Teri, Kathy and Ray, Nichole, and Debbie for making this a terrific meeting.

If you want to read how our meeting had an affect on one of our members, Allen Rucker, read the Support R Us blog published in September 2013!

~ By Cindy McLeroy 

Crowdsourcing Neuroimmune Disorder Specialists

One of the most frequent requests we receive at SRNA is a referral to a specialist who understands TM, ADEM, NMO or ON. Finding these specialists is critical and also a challenge. It is a challenge because these disorders are rare and there are few centers and physicians who focus their specializations on these disorders. Finding the specialists is critical to people’s care, because there is very little published in the medical literature that offers definitive guidance about clinical care based on scientific studies. Today, almost all clinical care, including acute treatment, is based on expert judgment. A physician becomes an expert by caring for a large number of patients with these disorders and thus developing expertise.

We have just launched a web-based resource, the Physician Network, to address this critical need in our community. The network resource allows anyone to browse through a list of experts in the field of rare neuroimmune disorders. You are able to search based on disease expertise (ADEM, NMO, ON, TM) and by specialization (ranging from pediatric care to psychiatry to urology). The physician network is organized geographically so that you are able to search by location, as well.

The most exciting feature of this new resource is that the members of our community will be able to participate in expanding and growing our network of physicians. SRNA physician network includes the TM and NMO Centers at UT Southwestern and Johns Hopkins University and specialists from Multiple Sclerosis centers at major academic hospitals across the country. We want to hear from you! If you would like to share information about your physician or medical professional in your area who has been able to offer you excellent care through your journey with one of these rare neuroimmune disorders, please add them to the network and help us expand it. Using a community collaboration platform to grow our network of physicians and specialists, we can all participate in ensuring that everyone in our community receives care for their disorder. Please don’t forget to ask your doctor for his/her permission to be added to network. SRNA will verify the information that is provided and will confirm that the physicians and specialists added to the network have an open practice and are seeing new patients. Thus, there will be some time between the submissions from our community and when they are posted on the network.

By adding physicians who are offering you great care to the Physician Network, other people in your area will be able to receive excellent care from a specialist. The second very important benefit is that by being identified as a physician or medical specialist in our Network, the medical professional will begin to see and care for more people with these disorders, and thus will develop a more intensive and extensive experience with these disorders. As expert judgment guides acute and long-term care, the development of this experience is of critical benefit to everyone in our community.

It is important to keep in mind that finding a physician in your ‘area’ is going to be a challenge or impossible for some of you. If you live in a rural community or in a state such as Montana or Alaska, that have very few neurologists, scattered across very large distances, you are likely going to have to travel to a different state to find an expert.

Please join us in growing our network. If you have a physician that you think should be on our network, please add him or her to the list by clicking here. We look forward to hearing from you and are excited about the potential to improve medical care!

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 (, 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 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.


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