In Their Own Words

Paula Cook
Medina TN

January 8, 2003

I was diagnosed with TM in February 1998. I am 60 years young; I was 56 years old at the time on my diagnosis. On February 8th, which was a Sunday, I got up and was feeling fine, I thought.... I walked down to the mailbox to get our Sunday paper about 8 AM. We live in a rural area and our house sets more than 200 feet from the road. Returning to the house (our driveway has a good incline), I felt short of breath (I walk two or three times a day) and felt kind of weird. I went into our den and sat down on the sofa. At that time, I had two stabbing pains in my back (level T5). I sat there for a few minutes to let this feeling kind of pass.

I decided to get up and fix breakfast, as my husband was having his coffee. I told him how strange I felt and the more I moved, I noticed my left leg was sort of dragging. I began to have spasms in my left leg. I got through breakfast. My husband was to meet our son that morning , as they had planned an outing. I told him that I would be fine and I didn't want him to miss his trip, as they don't get to do things together often because of their work schedules. It had been almost two hours since this all started with me. The leg spasms had not stopped and they are getting stronger. So, I went to lie down thinking, if I get off my legs and feet that it might stop.

Our youngest daughter, who lives close to us, called when her dad told her that I was having these
spasms. She came over right away. She wanted to take me to the ER. I agreed to go and told my husband to go on and meet our son as planned. I was able to walk to the car, but got sick to my stomach driving to the highway, which is about two miles from our house. My leg would not stop the spasms.

We got to the ER at about 11 AM. I had to have a wheelchair to get into the ER as I could not stand up properly. As I was waiting to see the doctor, sitting there in the wheelchair, my left leg was getting numb, starting at my foot. The ER doctor, after performing a very cursory exam, wanted to send me home. He said that I just had a cramp in my leg. He told me to see my family doctor the next day. I knew I wasn't having a stroke, as I had had a stroke in 1991. The stroke left me with left sided weakness, but I was able to walk okay. My daughter said that we were not leaving until we found out what was going on with me. So, the nurse called my family practice clinic, and the doctor on call admitted me.

By the time they got me to a room, I was not able to move from my breast down. It took three people to get me on the bed. By the end of the week, I had many tests done, blood work, EMG, CT, MRI and a spinal tap. The neurosurgeon said I didn't have any brain problems. The neurologist tagged me with TM and said that I had a lesion at T5. I lost bladder and bowel control. I was in the hospital for ten days. I was given the three day treatment of IV corticosteroids for two hours each day. I started having a little movement in my toes on my right foot. I was paralyzed from my breast down. I had good strength in my upper body.

The physiatrist sent me to the Rehab unit in the hospital, on February 19th. I started a strict daily regime of PT and OT. I had to learn how to use a transfer board and wheelchair. And my daily routine of PT and OT was quite vigorous. I was not in any pain. Everyone in this Rehab unit had to rise and be at breakfast at 7 AM to start our day. We had either 30 minutes of PT or OT and an hour for the other with a break in between. Lunch was at 12 PM. After lunch there were two more sessions of PT and OT. It was hard to get much information on TM from anyone.

My attitude was good, as I am a spiritual person and know that God has a plan for each of us. So, I was standing on His promises that I would be healed, and I would do all I could to help myself. I had to learn to self-cath, and also give myself shots in my stomach, a blood thinner. After four weeks of Rehab, I was sent home on March 20th. I could not stand alone, but I was getting some feeling back in my legs. I had home health and rehab three times a week. I was able to use a walker by the end of May. I was then sent to out-patient Rehab three times a week. By December, I was going twice a week. I was doing both upper and lower body strengthening using gym equipment, mat exercises, and an exercise bike. I worked out for two hours. By February 1999, I was walking some with a cane. Over the course of this year, I had several bouts with a horrible attack of burping and thoracic spasms, which no one could identify for me. They lasted for as long as ten hours without stopping. I would take everything I could to stop the pain and agony, but nothing helped. I would have one of these attacks about every five to six weeks from the beginning of my intense workouts. No one would associate these attacks with my workouts. I would tell the therapists and my doctors, and they had no answers. I finally decided after having several of these bad attacks that I would ask my doctor for a script for a pain pill so I would have it when I had one. This was after having my longest and worst attack which lasted from 10 PM to 3 PM the next day. I have not had an attack in about six months.

By February 1999, I thought I was doing really good. But then I started having these bad spasms in my leg again. I was afraid I would become paralyzed. I saw my neurologist and he sent me to have an MRI and he started the steroid treatment again for three days. When they read my MRI, I had a disk herniated at T5-T6 and T6-T7, with compression on the cord. I wondered if this was caused by physical therapy. I needed surgery, and was sent to Memphis to see a surgeon. He did a myelogram and thoracic CT scan. He also looked at my MRI's and compared them, as they were done at different hospitals. The one from February 1998 showed a lesion; the one from 1999 showed the herniated disk.

I had surgery to get the pressure off my cord, so that I would not be paralyzed or wheelchair bound. But I may have permanent damage since it had been a year with compression on my cord. I had to have a thoracotomy by a cardiac surgeon to get to my herniated disk, where the neurosurgeon did the disksectomy and spinal fusion, using part of my 5th rib, bone from the Florida bone bank, and pins and dowels. I was in surgery for over 12 hours.

This was April 1999. I have had more pain and have been more uncomfortable since I had the surgery. But I am thankful that I am not wheelchair bound. I can use my walker or cane in the house. I have become weaker in my legs this past year and also have found that I have more degeneration in my spine.
I have much to be thankful for. I try not to take anything for pain; I have enough daily meds to take.

I do thank G-d everyday for the good as well as the bad. I made up my mind that I would not let my bladder and bowel problems keep me a prisoner at home. I have never been in fear of what may happen. We can only take one day at a time and make it the best we can. I have had several bowel accidents in public places, and needed help to get cleaned up. I was usually with one of my daughters, and once was at rehab. I now have bladder incontinence, and only have to do self cath twice a day. I try to be careful not to get bladder infections. I use my wheelchair when I go out since I can only walk with my walker short distances. I do get depressed occasionally, but won't let it take a grip for long; maybe a couple of hours. I will not let it control me. I am positive and try not to dwell on the things I can no longer do.

Be good to yourself, love yourself and try to find the peace and joy that you desire in your life. Share your memories good and bad, with others. Laugh a lot and Cry some. Don't dwell on yesterday and be wondering about tomorrow. If we can get through today, that will be enough.

Thanks to Deanne Gilmur for sending me the information on TM and the TM Association. I spoke with Deanne in December 1998.

Thanks to Sandy Siegel for the unconditional love and support he has given to all of us; in trying to let us know how many have this challenging disease. And keeping us informed with the Newsletters. And thanks to the others who are on the staff. May you all be richly blessed for all your efforts. Prayers to all of you. Don't forget to call on your Angels to help you and protect you and your loved ones, as they need to be loved back for all the care they give to us. Smile, Jesus loves you and so do I.

Paula Cook
cook633[AT SIGN]aol.com