RE: Alton Ryder's TM in a nutshell

Lindstrom, Ann (Ann.Lindstrom(AT)octel.com)
Mon, 8 Jun 1998 09:25:19 -0700

Alton - I agree with all the lessons learned at the end of you message.
I am so lucky to have a supportive spouse and friends and family who
have really been there for me. The able-bodied world really doesn't
get it. For those of us who are mobile, and look pretty normal, but
are in constant pain, it gain be pretty disheartening at times. One
good thing though, I have learned a different way of connecting with the
disabled. At a theater a few weeks ago, I noticed a girl with leg
braces making her way slowly up a long ramp, and smiled at her. She
responded with the most radiant smile. For years I have been turning
away from people with disabilities in the belief that it was not polite
to look at them too long. Never again....l.Ann

> ----------
> From: A.Ryder(AT)ix.netcom.com[SMTP:A.Ryder(AT)ix.netcom.com]
> Sent: Sunday, June 07, 1998 8:30 AM
> To: tmic-list
> Subject: Alton Ryder's TM in a nutshell
>
> Alton Ryder, age 63, retired engineer/physicist.
> Transverse Myelitis since 7/24/97, slowly healing.
> Cause unknown, possibly a blocked artery between T9, T10.
> All the nasty illnesses have been ruled out; I'm very lucky!
>
> Initial symptom was a feeling of pressure in the right kidney
> after dinner [500 miles from home.] Ten minutes later my legs
> were "on fire"; another fifteen minutes and I was paraplegic
> with severe back pain.
>
> Three months in acute physical therapy [St Joseph's in Nashua,
> New Hampshire --- God bless them!] My memory is vague, but I
> think I was barely able to wiggle my left foot when I came home.
>
> Three to four months of physical therapy at home and now on
> outpatient PT. At the end of February (seven months) I was in
> a wheelchair, using a slide board for transfers. The right leg
> was moving but without utility. I could use a walker to go about
> eight feet, twice a day.
>
> At nine months I could walk slowly for fifteen minutes with both
> legs with arm support, two steps without. I couldn't manage stairs.
> Now at over ten months I have started to use forearm crutches and
> to do stairs.
>
> I think I will be able to safely drive a stick shift car soon.
> Not as safely as before, perhaps, but adequately. I would be
> functionally descriptive if I were to carry a large yellow sign
> saying, "Student Driver." The safety level is probably the same.
>
> [I think I am writing this for an audience of fellow TM people.
> If that is not the case, I'm going to be very embarrassed.]
>
> It seems that most of the motor functions will recover, although
> the right leg wants to be bow-legged, club footed, and hammer-toed.
> It also wants to be to the left of my left leg. A real beauty, I am.
>
> Sensory functions are really screwed up. For the first few months,
> all contact was perceived as pain, "like stepping into a blackberry
> patch." Then slowly a return to normality in some areas, nada in
> others. I have enough sense of pressure in my feet to maintain
> balance, and I feel pain when the toes of my right foot get
> crunched, as they often do.
>
> Like many others with TM, my lower thighs often feel as if I had
> tight tourniquets there. But only when I am sitting.
>
> Basic bodily functions came back under control after about three
> to five months.
>
> Lessons learned:
> 1. My wonderful wife of 41 years is a stalwart supporter.
> This has been harder on her than on me.
> 2. I live in a supportive community.
> 3. The able-bodied don't understand obstacles to handicap mobility.
> 4. By the time the control nerves heal, the muscles are gone.
> Therapy now means working hard to rebuild muscles.
>