In Their Own Words

In each issue of the Journal, we will bring you a column that 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.  We are particularly grateful to those people with Acute Disseminated Encephalomyelitis who wrote articles for this publication of the Journal.  You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.  Please be sure to clearly state that The Transverse Myelitis Association has your permission to publish your article.

ADEM: Rob Reeves
United Kingdom
My Story; Are you sitting comfortably?

First symptom was jerking leg in bed at night; just as I was about to fall asleep, one of my legs would jerk waking me up. This would go on all night until about 04.00 am. Then I would fall asleep exhausted. After about one week, I went to the doctor, who tested my reflexes, and gave me tablets to help me sleep.

End of November, I went back to the doctor; odd feeling in my hands and balance not quite right. 6th of December, eyes playing up, double vision. Doctor sends me to the eye hospital. Eye doctors have a good look. “Eh, Charlie, have a look at this; what do you think?” Well, they look, and look.  Evidently I’ve had a stroke. They say I should have a MRI scan when I can get booked in.

15th of December, “Hello, doctor, I feel terrible, odd feeling in hands, eyes both work, but not together, numbness around midriff and round to the back, stiff neck muscles, and balance not quite right.” Call to my ex-wife, “Can you do me a favor, I need a lift.”

I was in the hospital for about eight days. I stayed in three wards. I gave so much blood, I lost count. So many people looked at me, probed me, asked the same questions; evidently I was “an enigma.”

I had x-rays, MRI scan and a lumber puncture, plus a steroid drip each morning for three days. Tablets to help me sleep, tablets to help me go to the toilet, tablets with vitamins, tablets cause I have a headache. Is it any wonder?

24th of December, “Do you think you can walk up that flight of stairs?”
“If I hold on to the side, yes.”
“Let’s have a go then.”  Up, down. “That’s okay then.”
“Name, Robert Reeves; date of birth, February 11, 1952.”
Evidently, I can go home.

Give my ex-wife, Liz, a call. “Can you do me a favor, I need a lift.”
I stayed with Liz in the spare room until early January. Walking was a bit dodgy. I stayed in the spare room; came downstairs for the odd meal. Was sick quite a lot after eating. Vitamin tablets I was taking tasted horrible; stopped taking them. Early January, moved back home to my flat. My mother moved in with me to help me with everything.

21st of January, went to see the neurologist at the hospital.  Results of lumber puncture not in yet.  Was given a course of steroids, five tablets a day for five days. I told him I wasn’t happy. I felt like a train that had been taken out the station and left alone on some old siding.

3rd of February, appointment with physiotherapist. Arrived in wheelchair, wearing patch; what a sight. She gave me a quick check over. Come back and see me in four weeks. She was very, very nice; first person I felt was actually listening to me.

23rd of February, neurologist rang with result of the culture grown from the cerebrospinal fluid taken from the lumber puncture.  He said I had ADEM?

During February, my eyes returned to normal, and the numbness around my midriff went. Going to the toilet unaided by tablets.

So far I’ve been hand washed, from top to bottom, by my mother, aged 72, my ex-wife, Liz, my girlfriend, Silvana. At this point, I would like to thank them all for their support, in so many ways. I would also like to thank my daughter, Daisy, aged 12, for all her hugs and kisses.

March, by now I’m able to have a bath by myself and also shave. I can now walk up the shops, my mother by my side for moral support. My diet is also back to normal.

3rd of March, appointment with physio.  I tell her I can now walk a short distance every other day. Any more and it wears me out.  She says, “carry on as you are, listen to your body and mind.”

22nd of April, appointment with neurologist.  He seems pleased with my progress, but I don’t think he knows much about ADEM; just a feeling I get.

24th of April, my mother, who has helped me so much, including a kiss goodnight every night, returns home to London.

End of April, had a chat with my doctor. He’s happy with my progress.

July, at this point in time, I can manage to walk about two miles, symptoms afterwards being tiredness in legs and a slight tingling.  I still have tightness in my right hand, both shoulders are slightly weak, left worse than right; balance not perfect but not bad, tension in head, and slight neck muscle ache. Takes me a while to get to sleep.  Bed time about 10:30; usually awake by 10:30 in the morning, sometimes not until 12.00.  Depends how tired my brain is.
 
All times and dates are approximate, but near enough.
That’s all folks, time for a cup of tea.
Love,
Rob
rob[AT SIGN]robreeves.demon.co.uk