Arkansas TM Support Group

I am establishing an Arkansas TM Support Group.  My husband, Al, got TM five years ago on January 2, 2003. 

His attack was sudden and dramatic.  Normally quite healthy and never having spent time in a hospital, he had a miserable upper respiratory infection at Christmas.  He was getting over the infection, but went to church on Thursday morning to lead his men’s cleaning project.  He came home feeling very tired and aching all over.  He didn’t want lunch, and said he was going to build a fire in the basement and “watch it;” i.e., take a nap.  He didn’t eat much that night.  The next morning, he still felt awful and complained of a tightness and odd discomfort across his chest.  I called our doctor and said I had a 73 year old man complaining of chest pains, and they had me bring him right in.  By the time we got to the doctor’s office, he was complaining of hip pain, but managed to walk in under his own steam.  Our doctor was in surgery, so he saw his assistant.  The assistant did some blood work, determined it wasn’t a heart problem, diagnosed it as “flu symptoms and myalgia,” and sent him home with some sample meds. 

By the time Al got home, his hip hurt terribly.  He just wanted to go to bed.  He slept and when he woke up in the late afternoon, the pain wasn’t as bad, but he couldn’t move his legs.  He had to go to the bathroom.  We managed to get him in there, but then he found he couldn’t urinate.  He didn’t want me to call the doctor; he wanted to sleep.  By early morning, he said we had to do something; he couldn’t get out of the bed.  An ambulance got him to the hospital.

Thus began our introduction to TM.  The emergency room doctors did all the appropriate tests for stroke and heart attack.  They were stumped.  One of the ER doctors said he thought he knew what it was, but he’d never actually seen a case of it.  He called in a neurologist.  His initial diagnosis was Guillain-Barre Syndrome.  As the paralysis seemed to be advancing rapidly, he told me to expect him to be on a respirator before morning.  They were very concerned about his breathing, but we passed the critical period and the paralysis stopped at mid-chest.  They kept him in ICU and on the fourth day began talking about Transverse Myelitis.  They confirmed TM with a spinal tap.  That was the good news and the bad news.  The good news was that they finally had a diagnosis and the bad news was a poor prognosis for recovery. 

He spent 3-1/2 months in the hospital.  After ten days in ICU, he was transferred to acute rehabilitation.  I became very frustrated.  I didn’t know much about hospitals (I was only in the hospital to deliver babies) and I didn’t know anything about TM.  I didn’t even know what questions to ask.  My daughter took over.  She found information on the internet and she contacted Dr. Kerr’s office at Johns Hopkins.  Dr. Kerr reviewed his records and found us a neurologist in Springfield who had actually treated TM cases (three in Springfield, Missouri).  I got a referral to see him without waiting the normal four to six months for a new patient!  I was impressed.  He said Al’s initial treatment was not only appropriate, it was aggressive.  The neurologist was amazed at Al’s recovery during follow-up visits, because of the severity of his damage from the attack.  He finally said that the rest of his recovery was pretty much up to him.

And this brings me to the reason I feel it is important to become involved in a support group.  My daughter got the information from The Transverse Myelitis Association through the website.  But we needed to talk to someone who had first-hand knowledge of the disease, not just research material from their computer.  The most relevant information we received was from an unusual source, the orthotist.  He made braces for Al’s leg, which made no recovery, and his right hand, which remains paralyzed.  He was struck with TM in Minnesota when he was in college, and had much the same disability that Al initially had.  Just talking with him about his personal experiences and his recovery was great.  He uses a leg brace and an arm crutch.  The major difference was their ages.  He was young and strong.  Al was 73, strong for his age and too tired for aggressive therapy to gain strength.   

He has about 75% use of one leg and none from the other.  His right hand is paralyzed with fingers splayed open.  Early on they could manipulate them into a fist, but he couldn’t hold it.  The left hand is awkward, but he has adapted.  He has a catheter all the time, and bowel function is sporadic and unpredictable.  He completely lost his sense of taste and smell.  He cannot distinguish hot from cold in the paralyzed limbs and his trunk.  He has a Jazzy wheelchair for inside; and a big 4-wheel electric cart for the yard.  We have a Dodge Van with a ramp, which makes life much more pleasant for both of us.  He went through severe depression as did I.  But his faith is strong, and he is living proof that G-d gives more Grace.  He is full of it!  And I mean that as a testimony, and with no sarcasm.  

That is our story.  We are a team.  Al lifts me up so I can carry him around! 

We would love for you to get involved in our group.  Please call or send me a letter or email.  We look forward to hearing from you.

Pat and Al Tolle
246 Queen Lane
Gassville, AR 72635
(870)435-2760
Cell: (870)404-0801
ptolle@gassville.net

Gassville is a small community about eight miles from Mountain Home in north-central Arkansas.  Mountain Home has Baxter Regional Medical Hospital, a large and very modern facility, and is a major retirement destination in the heart of the Ozarks, boasting the “World’s Best Trout Fishery” and the friendliest people in the world.