Transverse Myelitis Association
Volume 1 Issue 2
October 1997

Page 4

In Their Own Words

In each issue of the newsletter, we will bring you a column which presents the experiences of our members. Their stories are presented In Their Own Words by way of letters they have sent us. We are most appreciative of their willingness to share their very personal stories. It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves. It is our hope that the stories will help us all realize that we are not alone. You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.

Kerry DeFilippo
Chicago, Illinois
January 13, 1997

My name is Kerry DeFilippo. I am a 30 year old married male with two children. Amanda is five and Timothy is three. I am employed as a fleet service clerk (ramp work) with American Airlines at O'Hare Airport in Chicago. My wife, Joan, is also 30, stays at home with our children full time and cares for other children, as well.

I was diagnosed with Transverse Myelitis on Christmas Day, 1995. My symptoms began on December 17, 1995. I had a tight band feeling around my waist. Upon visiting my primary care physician the following day, he referred me to a neurologist. The neurologist asked several questions and gave me a thorough physical exam. He scheduled a MRI to be done the following week. Within three days, the tightness traveled down to my feet, and the only sensation that I was able to feel was extreme cold in my feet. I was sent to the ER and had a MRI done that showed a lesion at the T-2/T-3 level. I was given the option to stay in for a five day treatment of IV steroids, or go home for the holiday and return the following Tuesday for the five days. Given the prognosis of the sensation probably staying where it was, I opted to go home. Unfortunately, the prognosis was wrong; the sensation had moved up to my chest. I had no feeling from midchest down to my feet. I was admitted on December 24, and a spinal tap was done on December 25. This confirmed the doctors' suspicion of Transverse Myelitis.

I cannot say that I was ever in "pain", however, I was very uncomfortable throughout the hospital stay and for a few weeks beyond. I was in the hospital for five days, during which I received IV steroids once a day. I did not need any other treatments, such as physical therapy or antibiotics. The doctors felt that my onset of the illness was about six weeks prior to the loss of feeling. I thought I had a sinus infection, however, looking back, I realize it was a viral infection. I had been extremely tired and run down for about a week. I did not go to the doctor, because I figured he'd tell me it was viral and to wait it out. This is the only thing that they can trace my onset to. I have been told that if the loss of feeling ever does return, it won't necessarily follow a "virus"; it may just occur at any time, if it does at all.

I have been diagnosed with Acute Transverse Myelitis, and in March I was diagnosed with Carpal Tunnel Syndrome. This was a "good" diagnosis; the neurologist felt that if I didn't have CTS, it could be early signs of Multiple Sclerosis. I have been told by my neurologist and a neurologist that I visited for a second opinion, that Transverse Myelitis may lead to Multiple Sclerosis in some patients.

After my visit to the neurologist in March, 1995, I regained much of my feeling, all except in my left foot. I have limited feeling there. I am experiencing many of the initial symptoms on a "here and there" basis. These include a burning sensation in my back, shocking sensations down my back and periodically down my thighs. I am still extremely tired on most days, seemingly for no reason. I have trouble doing certain things like video taping. Any consistent movement or holding my hands still bothers me. I am able to work, and I recently gutted my kitchen and remodeled it completely. The neurologist and I both feel that getting back to a "normal" life is very important. He stated that doing my carpentry work that I enjoy doing is probably not the "best" thing in the world to do, however, I cannot sit by and watch my illness stay in remission or progress. Therefore, I take things very slowly. This was a hard adjustment to make, but it is worth it in the long run. Things such as cutting the grass are done by my wife, whereas, I used to do that. She feels that there is no need to do things that she can do instead.

As far as treatment goes, I would not take the steroids again. I do not feel that they were effective in any way with this occurrence. I do take pain medication when necessary. I have used Aleve and Naproxyn. I sleep when I need to, take it easy when my body tells me to, and basically let my body tell me what's happening.

I have since had another MRI in December, 1996. My lesion has shrunk a bit. I have been tested for Sleep Apnea, possibly related to TM.

I am very lucky that I was not affected as badly as others have been. I was always able to walk, which many others are not able to do. I realize that I may be affected again, at any time without warning. I also realize that I may never be affected again. I am hoping for the latter. I was concerned about my children developing this and their pediatrician and my neurologist have both assured me that it is not inherited, however, immune systems are. There is no way to know if they will or not, so it is not something that I can let occupy my mind. One thing I have learned from this is definitely live for today.

Marie U. Walker
Garner, North Carolina
February 26, 1997

This illness began in a small town in S. W. New Hampshire where we spend our summer at our daughter's house. She was having her first child and I was there to help. On April 12, 1996, three days after the birth in the later afternoon after shoveling some very light snow during which my back was hurting a little, I entered the house. Up to then I was in very good health and had never broken a bone.

As I walked across the room, my legs started bending in different directions, and I thought it might be leg cramps. Later, there was some numbness around the navel, but mostly a crazy walk. I went to bed as usual, got up about one o'clock to go to the bathroom, and I stepped on my left leg. It was as hard and stiff as a board, and I fell, breaking my left femur.

After four days in a small hospital for repair of the fracture, my lower body was numb, with weakness in my legs. Following a consultation with a neurologist, I was sent to Dartmouth-Hitchcock Hospital where an MRI and lumbar puncture were performed. The spinal fluid showed no disease, but the MRI showed a lesion at T8-10 level of the cord. There was no evidence of a tumor, and transverse myelitis was suggested. Another MRI a week later showed no change. The diagnosis was "lower thoracic myelopathy: spastic paraparesis" or transverse myelitis. Seventeen days later an MRI showed a normal thoracic cord.

After eight days in acute care I was transferred to a rehab hospital where I had comprehensive treatment for five weeks at a wheelchair level, learning to use a walker the last week. My right leg was quite strong except for some buckling. That soon stopped. The left was paralyzed. Spasms in the left were very painful probably because of the tender hip - leg incision. Spasms continued nightly in the right foot. After about five months, spasms decreased. Cold weather made them worse. Now, ten and a half months have passed, and I seldom have any.

I also had pain in my left foot, instep and heel, especially at night. An X-ray showed no fracture, and pain disappeared in about three months. My lower body is numb from the level of my navel to my toes, more so on the right side. Also, on the right I do not feel pain or temperature, such as hot water in a shower. On the left leg there are unpleasant sensations: when touched or rubbed it reminds me of sandpaper or sunburn; when touching metal it feels like a cut in the skin. The toes on my left foot do not spread out; however, swelling in both legs and feet have disappeared. Proprioception (activity of special receptors in joints telling where limbs are by touch and pressure) is diminished in the left leg and foot. I have tenderness in my left back between the lower thoracic and upper lumbar area.

I continued therapy as an outpatient twice a week, once land, once pool, and my husband continued the mat therapy and standing exercises, which therapists have added; now I do most of these on my own. In the 10th and now 11th month I have had therapy only once a week, strengthening the left leg using various apparatus, improving my gait and balance, and walking with a cane. However, I continue with pool exercises two or three times a week which I highly recommend. It's a joy to be able to walk in the water! Great exercise! My left leg has recovered miraculously. I can stand on it and move it in all directions almost at full range.

Bladder and bowel sphincter control is lost. For bladder control I "go" at timely intervals; if I can feel a "stretching" or fullness, I must hurry. At night when I first got home, I had a commode next to the bed, but because of the weak leg I often couldn't get to it in time. The bladder is so full that upon sitting or standing gravity takes over. Finally, I thought of diapers; no one mentioned these in rehab, and they had not occurred to me. Now that I am so much stronger, I use a female urinal at night. I have two, one for late night and one for early morning. No one mentioned these either in rehab. They work very well.

As for bowel hygiene, when I feel fullness, I must hurry. Sometimes it's necessary to help digitally, but that's not necessary when I have enough fiber in my diet.

I have been deeply inspired by Chris Reeve, especially the article, "New Hopes, New Dreams," in Time Magazine, August 26, 1996, pp. 40-52 by Roger Rosenblatt. Chris energetically supports research for spinal cord injuries and related diseases and works to raise money as well as public awareness. He has the courage to carry on with hope for the future. People with transverse myelitis can have hope, too.

Richard Boyle
Ohio
February 19, 1997

My name is Richard Boyle. I am 52 years old with Transverse Myelitis. On July 3rd I had the symptoms of a very bad cold. Sneezing, runny nose and whatnot. On July 7th, I began to limp. On July 10th, I began to drag my right leg, and on the 14th I was in the hospital. They had me on a Solumedrol drip for five days. At that time I developed a problem with my bowels, but no problem with my urinary tract. They tested me for MS. That was negative. They did a lumbar puncture. That was negative also. I was released after seven days and sent to another hospital for therapy. I was still able to use my left leg pretty good, but was still dragging my right. After seven days in the other hospital, I began to limp on my left leg. I was getting worse. I figured if I was going to die, let me die at home. So, there I went.

Eventually, I lost all control of my bowels. My wife couldn't take it any more, so I was admitted to the Cleveland Clinic where I was diagnosed with TM by Dr. Richard Ransohoff. I spent eight days there, and was sent home to a rehab center where I spent 41 days. I plateaued there and was sent home. While I was at the rehab center, my wife decided to leave me, and I have been alone since. That was five months ago. I have been going to Easter Seals for the last three months, and have improved some. Of course, it's not fast enough for me. I wear an AFO on my left leg, and have pretty good mobility. I have regained about 25% of my right leg. I don't drag it anymore; I can lift it, but not too well. I wear a KFO on that leg, but only sometimes. I don't wear it all the time as I used to. I have a friend who is into natural foods, and I have been taking Echinacea, black currant oil, Chlorophyll, Coenzyme Q10 10 mgs., Psyllium husks for fiber, Aloe Vera juice 2 ounces, Pancreatic Enzyme for digestion, along with the Docusate stool softener. The first four I mentioned are for nerve regeneration and muscle regeneration, and I personally believe they are helping. A good solid determined mind is also a great asset. I continue to improve slowly, but I refuse to quit. Seven months ago, I couldn't walk; now, I can with certain aids. So, to me, it's worth the effort.

Water therapy helps immensely. What I can't do too well outside the water, I can inside the water. I walk in five feet with no help, and in three feet I have taken eight steps without holding on to anything. It's getting progressively better. I hope what I have shared with you can be of some assistance to someone somewhere. It can't hurt. What I take is all natural stuff.

Mae Louise Clayton
Colorado Springs, Colorado
January 19, 1997

Hello, Transverse Myelitis Victims. My name is Mae Louise Clayton, age 71. I've lived in Colorado Springs for 33 years. My medical history is nothing to be desired during this period of time. I had cancer in 1962 removing all my female organs except one ovary. In 1972 I had a bleeding ulcer and they had to remove 3/4 of my stomach. I started having back problems in 1976 with deteriorating disks. After six back operations, things began to look up. In the late '80s, I did a series of 12 acupuncture treatments to keep the pain down. I was getting much better and back to a normal life. But in October '95 I started dragging my right foot as I walked. I was sent to the hospital. I took an MRI and it showed it was a mild stroke. On January 7, '96 I tried to get up and pull myself out of bed and my legs buckled and I tried to grab the bed spread and couldn't with my hands. At this time, the doctors here thought it was a certain drug causing this condition. That was not the case after further investigation. Now I've been diagnosed with the disease called Transverse Myelitis. This is my story about it and how it has effected my life and others.

This is nothing I ever dreamed about. I did learn there are others in every part of the country who have it, too, in some form or another. At least I know I'm not alone with this dreadful disease. I have it in my arms, hands, legs and feet and also my hips. My legs feel sometimes like they have tight bands around them and that I am trying to get out of them because they're so tight. My hands feel like sand all the time and ache constantly. If I was to rub your back, I would be thinking I was rubbing sand on your back. The way the doctor explained it to me is that it's just like someone severed all the nerves in my spine. They go every-which-way and sometimes they feel like they're going to tear right out of my back. My legs below my knees feel so heavy sometimes. I can hardly lift them at all. It's the nerves in there that's damaged and making it feel that way. I'm taking PT as an out patient. I go two times a week. They put my hands in a whirlpool and it makes them feel so good. I can stretch my finger out afterwards, but then in an hour or so, my hands get tight and start feeling like sand and hurting again.

If I'm not looking at my feet when I move them, I don't know where they are. They play tricks on me. As long as I'm looking at them, I can set them there where I want them to set. Also, in my fingers, when I pick up anything, I can't tell what is in my hands unless I see it. If I'm looking at it, I can pick it up and if I'm not looking, no use in my trying to pick it up. Having this myelitis in my hips makes me feel like when sitting on a stool or chair without sides and I'm just wobbling around rolling on a ball or something. I can't sit steady on it. I've fallen twice. My husband or someone still has to help put me over into the shower and help me get into the tub. I have one of those shower stools (I wobble on it, too). I sit on it after I get in there. I have to have help in order to get out. Even with all the grab bars my son-in-law and son put in, I still have to have help.

Test after test was made this past year at three different hospitals trying to find out what was wrong with me and why I was feeling this way. About a month ago, they found out what it was. At the first hospital, they thought it was the polio syndrome coming back on me (I had polio when I was a young girl). That was ruled out. But then they came up with perinthal neropathy. I was treated for this for 37 days in Penrose Hospital with PT and medication. Things were working out pretty good with the occupational therapy and PT. They helped some, but not enough. After 37 days of treatment and PT, they let me come home. I was not satisfied with the results I was getting so I wanted to get a second opinion. I went to the University hospital in Denver and saw a Dr. Wright. After being treated up there for a while, they decided they did not know what was wrong with me. I had them all puzzled. I took test after test, different kinds of tests trying to find out what was wrong. But they could not find out what was causing this condition and that is when they suggested the Mayo Clinic. Dr. Wright set up an appointment for me at the Mayo Clinic at the neurological center in Rochester, Minnesota. Finally, on November 7, I had my first appointment at the Mayo Clinic. I consulted with Dr. Sorenson, one of the nicest doctors you could ever want to have. Cliff, my husband, and I stayed in a motel and we would go up to the Clinic every morning about 7:30 and they would put me through many kinds of tests each day. It was for a week and on Friday that's when I had a consultation with Dr. Sorenson. That's when he told me that there's nothing they could do for me. He did tell me he knew what I had, but there was not a treatment for it. That's when he told me I had Transverse Myelitis. I never heard of it. He went on to explain where all the nerves in my spinal cord were damaged or inflamed.

It has taken me quite a while to get over the shock of hearing that I will never be well again or never walk again and never use my hands unless a miracle happened. He also said trying to surgically correct the problem may cause more damage than I have. Our whole lives have changed. I've talked to people who have it (myelitis) in just their feet and legs, but never in both hands, feet and legs. I have what you might call a "triple dose." We just live it one day at a time and see what happens. Some days I hurt so much I want to just throw up my hands and quit, but I can't give up. I've got to go on. There's so much to learn about this rare disease. I can't stop now. Now I'm confined to a wheelchair 100% of the time. I can transfer from my wheelchair to a seat or my bed, but it is very difficult for me. My family made some adjustments to our home to assist me to exist in my home. We installed grab bars, ramps on the front porch and in our den and built a platform to make a chair higher for me to transfer easier. Cliff is now shopping for a special van that will accept wheelchairs. My condition is so different from all the ones I've read in Transverse Myelitis magazines, newspaper clippings or on the internet. This condition has nearly covered my whole body. From my elbows to my finger tips. Then from my waist down to my toes. My bowels and kidneys function on their own (so far). I didn't know there was such a disease as Transverse Myelitis until they said I had it and requested information from NORD. I hope this letter will be helpful to someone who has Transverse Myelitis. I also would welcome any comments from anyone who has Transverse Myelitis. Please call or write me anytime. I would like to discuss how you got it, to what extent you have it and how you are coping with Transverse Myelitis.

Mae Louise Clayton
1707 Bates Drive
Colorado Springs, Colorado 80909
(719) 596-3261

 

 

Anonymous Male 50s
February 20, 1997

I was sitting at my desk one day while operating my computer. Tennis was on my mind as I had a hot game scheduled that night. My left arm began to feel numb and my right leg felt like it was going to sleep. My right foot began to feel warm. I sat back from the computer and began to self diagnose all of this. I must admit that the thoughts that ran through my head began to make me sweat with anxiety.

I called a friend of mine that is a doctor in the local hospital emergency department and asked him if he thought that I was having a heart attack. He said, "no", but that in his opinion, I should drive over to my regular doctor and get him to check me out. I called my doctor's office and inquired about seeing the doctor and was told that the earliest that I could see him was the next day. I explained to this doctor's nurse that I might be having a heart attack and really needed to be seen sooner. The nurse told me to come on down and that she would work me in. I shut down the computer, and headed to the doctor's office in my car. On arrival, I had difficulty walking straight and I was concerned that I might even look like I had been drinking. Since it was only 11:00 AM, I was not entirely comfortable with the fact that I might be seen staggering into the doctor's office. I walked as straight as I could and spoke to several people that I knew on the way in.

The doctor saw me in short order and gave me a few simple coordination tests, i.e., finger to nose, knee reflex, etc. He was baffled but interested. Further observation and tests were needed. He wrote up an order for me to be admitted to a local hospital and told me to drive over to the hospital and check myself in. My control was getting worse, but I could still walk and drive.

I tried to contact my wife to let her know what I was doing, but her voice mail was full and I was unable to make contact or leave her a message.

Once I got to the hospital and went through the admitting process, they began right away to put me through many tests to include cat scan, MRI, Doppler studies, blood work and several other tests. My condition was definitely getting worse as I was having difficulty moving my arms and legs at all. I was definitely worried about losing the ability to breathe on my own as I became paralyzed totally from my neck down (except my lungs).

I asked the nurse to call my brother who worked nearby as I really thought that I might be on the way out of this world. My brother showed up shortly and his presence had a great calming influence on me. We were actually able to joke and laugh to relieve tension. My brother remained with me until well into the night and until my wife could be located and informed that something was amiss.

Sometime during the testing in the afternoon, a small spot was located on my spinal cord at C-3 in one of the MRI scans. A neurologist was consulted and I was put on high doses of steroids to hold down swelling and inflammation of what appeared only as a dark spot about the size of a BB on my spinal cord.

I was put in intensive care and constant check was made to insure that I could continue to breathe on my own. I could move nothing except my neck and head. I could talk, smile, blink my eyes, and even wiggle my ears, but I could not raise my finger, wiggle my toes, or move anything from the neck down.

I remained in intensive care and on steroids for a week although I did get stepped down to less intensive degrees of intensive care during the week.

During my first week I felt like I was floating in space, as I could not feel the bed under me. My mind was very alert as I could not feel my body and did not have any of the usual aches and pains to think about. This allowed me some time of intense concentration and thinking. I actually had a religious vision, which was my first and last so far. Looking back on the religious vision, one has to wonder if the steroids didn't help it along. The "vision" provided me with a great deal of comfort.

This was obviously a very emotional time for me. How can you "lose it all" and not be emotional? In fact, now at 23 months since it happened, I still get emotional about it.

After my first week I was moved to another hospital noted as "rehab." It was great just to see the sunlight as they hustled me into the ambulance and strapped me down. I was on an adventure although I was totally helpless. Once in my new environment, I was checked in and given a corner room. The people at the hospital were great. They literally took care of my every need. They smiled and laughed and offered all sorts of encouragement.

My family would come in and ask me to move my toe or my finger, but I could move nothing. My 13 year old son came to visit me and was delighted to be able to tell me that he had just gotten a 54 on his English test and didn't have to worry about me strangling him in retribution.

After a couple of days in rehab., I noticed that I could just barely move one of my right toes. I could not ring for the nurse. This concerned me and I did panic occasionally when I wanted someone to help me, but had no way to call for help. This was noticed and the call button was placed under my head so that I could move and use my head to push the call button. I also rang the call unintentionally several times.

As days passed, I began to move other fingers and toes. I actually could raise my knee about an inch off of the mattress after a week in rehab. After two weeks in rehab (three weeks from ground zero) two young women came in to see me about getting started on physical therapy. This was all new to me. My attention thus far had consisted of being fed and changed by the nurses.

The women from physical therapy cranked up my bed making me sit up. I immediately felt faint and they cranked me back down. Apparently, when you are paralyzed, the muscles that hold up your blood pressure do not work, so upon testing it was discovered that by raising or lowering the head of my bed, my blood pressure would change thirty points. This, I was assured, was going to improve as the nurses cranked me up and down from time to time just to exercise my circulatory system. The feeling of faintness caused by this was not pleasant and I would break out in a sweat like I was going into shock.

Day by day, I began to move something new. I had almost no strength, but I could move parts of my body. I remember my physical therapist bringing in a hand grip measuring device and reading a grip strength of one half of a pound with my left hand and two pounds with my right hand. I believe normal grip strength (based on my brother trying out the device) would have been about 130 pounds for me.

After a month, I could sit up in bed. The therapists were working with me and trying to get me to use a board to slide from the edge of the bed over to a wheel chair. I had a finger splint that I could put on my wrist and activate the call button and dial the phone if it had been placed in just the right spot on the bed. I could also work the TV. Without the splint, my finger was like a wet noodle. Having delusions of grandeur, I asked my wife to bring my laptop computer up to the room. It was a while before I could do much with it, but just having it close by gave me a challenge to strive for.

Each morning I was changed, bathed and transferred over to the wheelchair. Eventually I was wheeled down to the end of the hall to a large "play room." The room was full of people doing all sorts of things ranging from memory games to ping pong. My therapists selected a few toys and we began therapy. I enjoyed it, but even the simplest things were almost impossible for me. I was exhausted after 30 minutes. Just having my legs manipulated to improve my range of motion was tiring.

I was hooked up to a catheter that stored urine in a leg pouch, but this didn't prevent me from having the other kind of accident. Often I had to ask for a time out from therapy and a nurse would have to be found to change my diaper. I got over the embarrassment in a hurry. You just had to do the best that you could and get on with the program. The nurses and therapists were nothing short of fantastic. They were truly angels.

I got to know everybody. I discussed things with the janitors, the nurses, the therapists, and the doctors. I knew a great deal about the lives of many of them before I left the hospital.

As time passed, I was hauled to a standing position. Unfortunately, I could not stand up for one second, even if I held on to wooden rails on either side of me. Later I was able to stand for three seconds before crashing back into my wheelchair.

After eight weeks in rehab., I could walk a complete circuit around the halls on my floor with a walker. I can tell you though, that I took many a spill to the hard vinyl floor on the way to that feat. The nurses were afraid of the liability of my taking off on my own and they scolded me several times for taking off without them.

I told the floor nurses that I looked forward to the day that I could streak naked except for my support stockings (used to hold up my blood pressure) down the halls. Soon after that comment, they figured it was about time for me to go home.

I went home in the rehab van as I sat in my wheelchair. The physical and the occupational therapist had already checked out the house for hazards and the need for ramps, etc. My shower needed a chair and a flexible hose with shower head. My toilet needed an elevated seat so that I could transfer from the wheelchair back and forth.

My bladder was operating at about 30% and I wet the bed often. I had learned all about bowel programs, digital stimulation, and rubber gloves in the hospital. Naturally, I was not ready for any long excursions away from my bed or my bathroom.

My friends were all great and offered all sorts of encouragement. Many of my problems were so personal that I hardly wanted to discuss them with my doctor, much less my family and friends.

As I improved my strength and my ability to get around, I still had some sort of "malaise" that was physical more than mental. I believe it related to my sporadic blood pressure. I just didn't feel like doing much. I wanted to do things, but when I actually got into the process of getting up and doing something, I would lose interest or it was just too much effort. I still have some of that at 23 months from ground zero.

After being home for about two months and going to rehab twice a week, I began to feel a burning sensation in certain parts of my body. It was like a severe sunburn or like sitting for hours on a block of ice. As time has progressed, I still have the burning that is mild on my back and shoulders including my arms and fingers. It is more severe on my left side running down the inside of my thigh to my feet. It covers my mid-section across my stomach. Nothing gets rid of the pain. I've been to several pain clinics and tried most drugs. I am fortunate that I can sleep. When I do sleep, I do not feel the pain. When I wake up, it is like something turned the pain switch back on. I continue to look for relief from this "bear." I do not take any medication, however.

A spinal cord stimulator that puts electric current into your spinal cord overriding the pain signals has been suggested. The theory of this is to put so many messages through the spinal cord that the pain gets blocked out to some degree in the traffic jam.

Well, here I am today 23 months from ground zero. I drive to work each day although I don't work as long and hard as I used to. I passed my flight physical at 12 months and I am flying my twin engine airplane alone and on instruments. I have been fully checked out. I go to the local YMCA where I am on the board and work out two hours twice a week. My strength continues to build. I estimate that my legs are 60% of original and my upper body is 80% of original.

I have to be careful about getting into the shower as my feeling of hot and cold from the neck down is very spotty. Many places below my neck cannot tell if you are touching me with a pin or your finger, but I can feel the touch. I still can't run so I can't play tennis. I fall down occasionally. I still use a catheter and the rubber gloves are in the bathroom. I am out of the diaper. It has been slow and painful, but it has been the most interesting journey I have ever been on. I think I have grown a great deal as a result of it. I am much more conscious of the pains and problems of others. I am much closer to my family. I have sure spent lots of time at home with them. My 16 year old son wrote a school paper about how much he admired me. So, some good has come out of this as well as some bad. I feel very fortunate to have survived this ordeal as well as I have. I have talked to people that have had much worse and much better experiences than I have.

My wife is a real champ. How she has put up with me through all of this I will never know. I would have thrown myself out with the garbage long ago except for the fact that I didn't have the strength to pick myself up.

I have always tried to look at the good in any situation. I believe that much of life is about learning how to overcome adversity. One of my nurses told me that the Lord won't give you more than you can take. He sure can put you to the test though.

Top of page
Go to Next Page
Go to Previous Page
Go to Newsletter Index
Go to Main Page

Help support the TMA
in our mission to advocate
for those with rare neuroimmunologic disorders.

 Make a Donation