Transverse Myelitis: Our Stories "The Book"

Transverse Myelitis: Our Stories "The Book" Transverse Myelitis: Our Stores "The Book" is made up of 20 stories of people from around the world These stories come from all parts of the world.

Transverse Myelitis: Our Stories, is a book of
happiness, sadness, perseverance, strength, wisdom, caring and many other emotions. It’s a book of stories of those that have been affl icted with the disorder, stories of how it has affected them and their families, their lives, their livelihood, and stories of how they are dealing with it. These stories are written from the heart, from each individu

al person, in their own words, how Transverse Myelitis has affected them. In most cases, it was extremely tough for the person to write the story surrounding their own circumstance. Transverse Myelitis is certainly a life changing event and it can hold many deep, disturbing memories and emotions. TM is still a fairly rare disorder and not known well enough so that if one of your friends asks you what is wrong and you tell them that you have Transverse Myelitis, they won’t have a clue what you are talking about. Everyone knows what cancer is, what diabetes it, what polio is and even usually what multiple sclerosis is, which TM is a cousin disorder of. We also wanted to put this book together to show that TM can literally affect virtually anybody. We wanted to put this book and our stories out there to hopefully raise some more awareness as to what TM is and how it affects you. We want to do this because at this point in time, there is no cure for it and it is a devastating disorder. In particular, what gets me the most is when it affects very young children. They don’t deserve this at all, they don’t deserve the pain, the spasms, the muscle weakness and atrophy, the steady diet of medications, the heavy calender of doctors visits, not being able to walk or play normally etc…it goes on and on. Now, you’re saying to yourself “why would I want to read this book?” and I’ll tell you why. You’ll probably not find another book of personal stories that are so touching, so caring, so down to earth. Some of the stories are fairly short, others are a bit longer, but each is just as
important as the other. This book and these stories will probably make you laugh and cry. Make you sad, happy and proud for each of these people for persevering in the face of adversity. Any proceeds that are made from the sale of this book are going to help those with Transverse Myelitis and to also go to research into a cure for TM. Thank You...!!

01/20/2020

I've now opened the book up for free open source available for everyone to download and read.
Take the time to read it and pass it on to family or friends that you feel might get some further insight into what its like to have TM.
This link will take you to the file to download.
fil:///C:/Users/kdwei/OneDrive/Desktop/Transverse%20Myelitis%20Our%20Stories%20Very%20Final%20Manuscript-1.pdf

11/25/2019

The book is now a free download available on the Transverse Myelitis Folks group.
Or...contact me and I'll message a copy of it to you.

Daniels story is the first one in this book. He was only 6 months out from his diagnosis. I sure wish we could add the e...
10/27/2016

Daniels story is the first one in this book. He was only 6 months out from his diagnosis. I sure wish we could add the ending to his story. 😥

Transverse Myelitis: Our Stories is a culmination of stories from twenty people from all over the world that have been stricken with Transverse Myelitis.We just want people to know what hurdles we have to overcome in fighting this devastating disorder in hopes of finding a cure some day. We want ...

08/02/2015

Read the stories of 20 people from all over the world regarding a rare neurological disease that affects the spinal cord nerve.
Transverse Myelitis is a cousin disorder to Multiple Sclerosis but is so rare that it is hardly ever heard of.
Roughly only 2 to 5 people per MILLION.....
But when it hits, it hits..!!!
Not something I would ever wish on my worst enemy or ex spouse even....!!
Transverse Myelitis is a so*******ch to deal with.
Order the book....give it a read and give me some feedback.
I am doing what I can to spread awareness for TM so that others, even doctors can become more aware of it.
One more story from the book....
Tom Rafferty, a retired NFL football player that spent his entire career with the Dallas Cowboys.
Tom was with the Cowboys when they won Super Bowl XII against the Denver Bronco's....Tom's story....
Tom Rafferty

This story about Tom Rafferty is being written by myself, Kevin Weilacher (the author of this book) using information from conversations through emails and phone calls between Tom and myself.

The reason that I am writing this story is because, at first Tom was going to do it and once he started, he realized that it was quite an undertaking and Tom realized that his work schedule and physical therapy schedule would prevent him from being able to devote the time required to do his story justice. Also, Tom
mentioned that the story was going to bring back many memories. I kind of took that to mean that it possibly might bring back some undesirable memories. I totally understand that because there were a couple of others that initially wanted to have their story included but they backed out because of the unpleasant
memories.

So, to begin Tom's story, first a little background on him....Tom was born in Syracuse, New York and eventually went on to attend Penn State University and play football for the great Joe Paterno as a starter all four years.Tom was a 4th round draft pick with the Dallas Cowboys where he was their starting guard for four seasons and then switched over to their starting center and remained there for the rest of his career. Tom was with the Cowboys for Super Bowl XII and XIII and was one of the reasons that Dallas won Super Bowl XII against the Denver Broncos.

Tom retired from the Cowboys at the end of the season in 1989. He finished his football career with some rather impressive statistics: He played in 221 total games to include 167 consecutive games which at the time was more than any other Cowboy in history. He was in 18 post-season games and two Super Bowls. He was an All-American in 1975 while at Penn State, he's been inducted to the Greater Syracuse Sports Hall Of Fame in 1998 and he was also named to the Dallas Cowboys All-Time Team in 2003.
Tom is a cut above your average NFL football player.

Now, to step ahead a few years.....after retiring from the NFL he had gone on and earned an MBA from the University Of Dallas. Tom was working at a sports supply company in the Dallas area.

On April 25th 2008, Tom and his wife Donna, were in San Antonio helping their son Michael move. Tom says, "I went to bed that Friday night with a loss of sensation in my right leg and a tingling in my left foot. I thought I'd ruptured a disc moving furniture. In the morning it was really worse and we went to the hospital."
And that's when the fun began.

The doctor prescribed painkillers, muscle relaxers and rest. Well, while back at home the door bell rang and Tom in an effort to go and answer it, fell down because his legs gave out. By the time he got back to the hospital Saturday night he couldn't move his legs and he had a lot of back pain. So now instead of the pain killers and muscle relaxers, Tom was put through a series of CT scans and MRIs, followed by huge doses of steroids. The exams
showed inflammation of vertebrae between T 7 and 11, and although they aren't sure exactly of the cause, through the examination, the doctor's didn't believe that this condition was related to any trauma or injuries related to football, they
felt that this was some type of viral or autoimmune condition.
After a few days “Raff” was transferred to a rehab center and then eventually to Dallas on May 20, 2008. He was at Baylor Rehabilitation Center until June 11, 2008.

Since then, Tom has been recuperating at the family's home in Keller. He is still working at the sports supply company and more than likely because of his incredible work ethic and his offensive lineman mentality, he is still pushing himself every day, working on his recovery and trying to regain what he has lost. Tom tells me in an email from a couple of months ago, “my recovery has started to level off. I need to see my neurologist and try to get going again. The pain issues have lessened but the banding around the waist has continued to be a problem. As I tell people, it is what it is, and we will live with it.” He goes to physical therapy three days a week and to the gym to do upper body weight work three days a week. He at first, was using a wheelchair to get around his house and is now able to get around without it, he makes dinner and he gets on his riding mower and manicures the 2 ¾ acres on which the house sits.

Tom Rafferty went from a vigorous, active salesman for Sports Supply Group, and husband and father, to a former pro football player who had to learn how to walk all over again. One thing that Tom also told me, was that he has never cursed his fates or asked, "why me?"
"Those words will not come out of my mouth," he says. "I will not feel sorry for myself. I will just get better. I will walk again because there's no choice." An email I got from Tom just a few days ago said this; “The 3 year anniversary was not really a big event. I have leveled off in my recovery now and my Neuro told me it probably won't get alot better without new drugs or my nerves reconnecting. I still am way past where I was when I got out
of the hospital 3 years ago. Some days I can run, other days it is just nice to be able to walk without falling down.”
So, Tom has gone from being in a wheel chair to now, apparently being able to run for some amount of distance on some days and on other days still having difficulty walking.

This is TM and what it can do....even to the very best of us.

My story from the book.........There are 11 more stories similar to this one...............................................
05/05/2015

My story from the book.........
There are 11 more stories similar to this one.............................................................................................................
Kevin Weilacher N. Canton, OH
52 Years of age
Married

The Roller Coaster Ride I Didn't Want To Take

To explain the title of my story first of all, I'll tell you that there has never been anything in my entire life, not getting married, my divorce, my entrance in to the Air Force, not the death of my father, nothing, that has taken me on the emotional roller coaster ride that Transverse Myelitis has, since 14 May 2008.

May 10th 2008 my wife and I were on vacation in Niagara Falls. I ended up having to take some vacation time from work or I was going to lose it. So, my wife and I decided to take it at that time because it was close to the time we got married.

We were married May 27th and we went to Niagara Falls for our honeymoon. This was a celebration of our 8th anniversary. What a time we had, it was wonderful. The weather was fairly decent and we had a hotel that viewed the Falls. It was gorgeous. We had to head back to Ohio by the 15th of May so we decided to leave Niagara Falls on the 13th and stop in Erie, PA to visit with my mom and her house mate, Kathy. Kathy is a dear old friend that has lived with my mom for years after they both got divorced. She is like a second mom to me.

We got to Erie about 5pm and we sat and chatted and had a great time. My wife Liz, and I decided to head out and grab something to eat. We went out and had a meal and then went right back to mom's. We sat and chatted some more and by 9pm we hit the sack, we were beat. There was all day tomorrow to catch up on
everything.

Little did I know what was coming during the night. About midnight my wife gets a phone call from her daughter. She has a bad UTI
and wants to talk to mom to see what she can do. She's in some pain..

I wake up during the conversation to see what's wrong....Ten minutes later, my wife hangs up and she drifts back to sleep, but when I wake up, I tend to take awhile to get back to sleep...so I lay there and try to go back to sleep. Now mind you, at mom's it's pitch black outside at night. There is no light at all, so there is nothing to see to keep me awake. I finally start drifting off....The next thing I know is I'm awakened by a strange feeling in my left leg...I look at the clock and it's 1:00AM...It's 1:00AM May 14th 2008. I had only drifted off for about 20 minutes or so. The feeling is like a bad leg cramp that won't go away. This feeling is strange....

I get out of bed and try walking back and forth to walk it out. Again, remember, there is no light. It is pitch black in the room. I walk back and forth the length of the bed a few times and this feeling is getting worse. My right leg starts. I'm wondering what the hell is going on...I continue walking back and forth trying to get this feeling to go away. I try stretching my legs. Nothing is working.

My wife is still sleeping, I don't want to wake her up. This feeling is starting now with a prickly, burning sensation and I have the
sensation that I have to have a bowel movement. So I find my way to the bathroom and I go. Little do I know that that will be the very last time I'll ever have a normal bowel and bladder movement again.

I get back to the bedroom and my wife must have heard me because she woke up. She asks me what's wrong. I tell her I don't know but whatever it is, is something really not right. She turns on the light and this pain and burning/prickly sensation is getting worse. It is making it's way up my legs to my groin, to my butt, to my waist area.

This pain is now getting to the point where it's beyond any pain I've ever felt before...and now I'm starting to lose sensation and feeling in my legs and feet. My wife goes and wakes my mom and Kathy and calls 911. By the time the paramedics make it to the house, I am paralyzed from the waist down. The pain is unbelievable. The paramedics are standing there taking all of my vitals and the pain is burning my groin. At one point I scream out...”My balls are burning, make it stop”.

Seriously, I have never felt anything like it before, in my life. The hall in my mom's house was too narrow for the paramedics to run the gurney down, so, they had to fireman carry me, out to the living room and load me on the gurney there. Then it was off to the hospital.

I went to a small community hospital first because it was closest. During the ride there, my legs were spasming like unreal...they would draw up and then let go and then draw up and let go again...and I was thrashing back and forth from the pain.

So, I was met at the hospital by the doc...of course he couldn't do too much there...but, there was one doc that was there, she was a female from Russia that had heard what I was presenting with and she mentioned Transverse Myelitis....My wife and I only barely caught what she said...and then I was loaded back in the ambulance and carted off to the main hospital in Erie. Hamot Medical Center.

They sent me straight to the trauma unit. Started the 5 day course of Solumedrol steroids. Multiple MRI's, Spinal Taps, Blood Tests, Cat Scans.......and by the next day that I was there...I'll be damned..the diagnosis, Transverse Myelitis. Just what that Russian doctor had mentioned. Hmm. I had a spinal lesion at L4, L5 and S1 on the nerve of my spinal cord. Everything from that point down, had shut down. My legs, my bladder and bowels..etc...

So now, what the hell is Transverse Myelitis..? I've never heard of it, my wife's never heard of it, my mom's never heard of it...
Luckily, I had my laptop and the hospital had a wireless network..so I was a researching fool. I searched and dug and looked and found info. I found others that had TM.

Really? there were others that had this damn thing too...? Turns out not too many of them though..TM is sort of rare I come to find out, only about 2 – 5 people per million get it. What kind of odds are those..? I should have played the lottery. I also learn the statistics for recovery from this...1/3 make a good recovery, 1/3 make some recovery with quite a bit of residual problems and the
last 1/3 don't recover at all. Holy sh*t...where will I fall in those statistics..?

So, I'm in Erie, PA at the hospital. I live in Canton, Ohio...I have no idea how many days I'm going to be in the hospital. I have steroids being shoved into my body...I'm going through tests after tests. I
can't walk. The pain is still unbearable, the spasms are nuts, the hospital bed is terrible.
Thank god that we were in Erie so that my wife was able to stay with my mom. That was one good thing about this whole ordeal.

So, on day four of my wonderful hospital stay, we talk to a caseworker to see about a transfer back to a hospital in Canton. She tells me that she has talked to the hospital and they are ready to take me into their rehab facility. So...how to get me there...ambulance, helicopter..? Nope...insurance isn't going to cover that and it will cost a friggen fortune....how about if my wife drives me..?
They agree....YAY..!!

I spent a total of six days there in the hospital in Erie and then we got to head out back to Canton. Well, I'll tell you, it's about a 2 ½ hour drive. Not that far normally...but so*******ch....when your ass is burning with pain, and your legs don't work, and oh, by the way, I have a catheter stuck in me, that 2 ½ hour drive seems like
forever...but we make it. My wife delivers me straight away to the hospital and they get me checked in.

Back home...well...sort of anyway. At least we're back in the town we live in. I'm in the rehab wing of the hospital...they drag me out of the room once a day and take me to the rehab room to try and get me started on some recovery. I'm here in the hospital as an inpatient rehab for 8 days.

The rehab they put me through is intense...I work my ass off and there are times that I think that I'm never going to get anything back...my legs will never work again.
It is here in the rehab unit that I begin to lose all dignity that I ever had...I have to shower...and go to the bathroom...to p*e I have a catheter...and to do any of it, I have to have assistance....oh brother.

It's also here in the rehab unit that I get to meet the neurologist that I'll have for about my first year with TM. I'm not his first TM case. At this point he starts preparing me for the stark reality of what awaits me for the rest of my life....I will more than likely have to self catheter myself to p*e, I'll probably have bowel issues and may have to wear adult diapers sometimes. There will be severe
balance problems because there has been a loss of the control of the muscle from the knees down to the feet and also the hamstrings. Walking will be either with a walker or hopefully with a cane, after lots of physical therapy. There will probably be lots of nerve pain 24/7. That will hopefully be controlled to a degree, with some medication. There will be some pretty bad issues with fatigue. He tells me that I will wear out doing even simple tasks and that walking long distances will be out of the question. He tells me that there is no cure for TM but he will work with me to
treat whatever symptoms come up.

From the reading that I had done about TM, even though this is not something that I would wish on my worst enemy, I'm one of the lucky ones. There are people that have become paraplegic and quadriplegic from TM. I am lucky.

I got released on the 29th of May to actually come home....Woohoo. 8 days in that hospital was long enough..!! Now starts outpatient physical therapy twice a week. This brings on another complete set of challenges. My bedroom is on the second
floor of the house. I have graduated to a walker at this point. I can drag myself along okay. The steps will be some work...but dammit, I'm going to do it.

Long story short here...I'm was in outpatient physical therapy twice a week, for a year.....some of that was the most grueling stuff I've ever done. Each session was an hour long...and by the end of the session I would be friggen beat....But I have to say that my two primary therapists, Cindai and Mary Kay, were so awesome...
two of the greatest ladies I've ever known...I've even run into them out and about since I've left therapy and they recognize me and always give me a big hug. They are special..

Where has all that gotten me...? Well, I graduated from the wheelchair the first couple of weeks or so..to the walker and that lasted about three months before my therapist graduated me to the cane. It was extremely unsteady at first but got better as time went on. During all this time, I had also developed “episodes” that initially were diagnosed as migraines but I am now coming to believe may have been caused by some bad irritation in my lower esophagus and my upper stomach. The episodes would
cause me to have headaches, vomiting, diarrhea and other symptoms...and I would be flat on my back for 4 or 5 days.

I just recently had a EGD that discovered the irritation and my doctor says that it was caused my extreme stress (duh) which in turn caused all the other issues...So, no migraines after all...after 2 years of these damn “episodes” I think I finally have it figured out..”knock on wood”

Now, to the nitty gritty of it all.....this stuff can play with your head big time...I have beat myself up over and over and over....I can't do the things I used to do...I'm not able to run any longer..hell, I can't even walk around the block. I used to be a very active person..
I can't even do something as simple as changing a light bulb in the kitchen ceiling light fixture because I can't get on a step stool to reach it...F**K

I'm on disability...I have pain 24/7...weird sensations in my feet still...Leg spasms aren't as bad...but now I get leg cramps from hell....My balance sucks...I'm always on the verge of almost falling. Walking is something I don't take for granted. I have cognitive issues...I forget words for things all the time.

My wife didn't work before. I was the one that worked. I had a good job. Now, she has three part time jobs to keep our household afloat. Shall I keep going..? I can beat myself up some more...
I've spent a fair amount of time sitting with a “counselor” trying to learn how to accept my “new” self....I've done the antidepressants and all they did was depress me more...Quit taking them.

It's not been easy, it's not been fun....but, I have dealt with it and now I am one with it. I am who I am and this is as good as it's going to get.

Now, as of this writing it's been 3 years and 1 month of this roller coaster ride from hell. I deal with my pain now...I take pain medication and all it does it take the edge off the pain. Nothing has ever taken the pain away completely, nothing. There are days that will bring me to tears the pain is so bad. I suck it up...there is nothing I can do about it, it won't go away. I've found that a diversion has been my best bet.

I have had the wonderful pleasure of discovering that I have a talent for wood carving. I can almost say that I owe this to TM because I would have never had the time or taken the time to try it before. Now, it's my solace...it's a stress reliever. I have a little workshop area in my basement that I head on down to and I will carve to my hearts content while listening to my collection of music too...my music is also where I've found some peace.

I can keep my pain at bay for awhile during the time that I'm carving and listening to my music. It seems that my mind travels off somewhere else and leaves the pain behind. Unfortunately, I can only manage about 3 hours until the pain creeps back up on me and I have to get up, stretch, move around, take a pain pill, etc...
During my early TM days, I discovered that there just wasn't a whole lot out there as far as organizations to help those with TM. Even though it turns out that TM is a cousin disorder to Multiple Sclerosis, I've personally been turned away from a local MS rehab facility because I didn't have MS. All I wanted to do was to use the
free therapy pool because it's heated to the proper temperature and water therapy is very helpful.

There are support groups and I joined them all and was even lucky enough to help create one. But I vowed to do what I could, to try and help the TM community..however I could. Ever since then, I have been a huge advocate of spreading TM Awareness
anywhere I possibly could.

I've been appalled by stories that I've heard from other TMr's telling of other neurological doctors that haven't heard of Transverse Myelitis. I seriously couldn't believe that...
You mean to tell me that there are actual neurologists out there that do not know what Transverse Myelitis is, and obviously have no idea how to treat it...? How is a person that lives there and has to go to that neurologist, going to have half a chance of even getting diagnosed..?
Simply unbelievable.

Three years and one month...that's how long it's been now as of me sitting here writing this...I have come a long way...some of it in a physical recovery sense...I'm able to walk, if you can call it that. Maybe a controlled wobble is better...with the help of my cane of course.
At least I can walk...

I've learned to accept myself, learned to accept what I can do and what I can't do. I've learned to accept my limitations.
I've learned to not take anything, not anything, for granted. Life can and will change, literally in a minute.

My wife has made the statement before in conversation with people, that I've very rarely complained about things. That I've kept a very positive attitude.I try.

I've never been a pessimist, I guess you could say that I'm an optimist, but maybe more appropriate is that I'm a realist.
I look at what is, and understand that this is what things are going to be like, and accept it. I still have my melancholy days. I still have my days that I wish I were my “old self”. That I could get on my bicycle and go for rides. I still wish.

Either way, my life isn't over by far. I have lots of good days left in me and this has taught me one valuable lesson. To make sure that you don't waste those good days.

The last thing is in regards to my wife. This has probably been as hard or harder on her than it has on me. Even though she isn't dealing with the physical aspects of TM, she's dealing with
me having it. It hurts her to see me go through this and also now she is burdened with the extra things that I used to do, things like having to cut the grass in the summer or shovel snow in the winter. She does this on top of everything else she normally does and all without complaint.

Did I mention that she's holding down three part time jobs too...??

I have an amazing wife. I love this woman.

TM Network http://transversemyelitis.ning.com/

My website for my wood carving http://kevinsraisingcane.snappages.com/

The Transverse Myelitis Network is a social network

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Canton, OH

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