Transverse Myelitis: On Exercise, Rest, and More Exercise

I have had a fascinating and very rich few weeks. My wife and I have had 71^st birthdays. We have had a 50^th Wedding Anniversary lunch with over 50 family members and professional colleagues attending. Excitement and anxiety and exercise more than I usually manage. We had one day free, and then yesterday 13 of us boarded the High Speed Catamaran on the Brisbane River to travel the 24 nautical miles to Moreton Island across the bay from Brisbane, Queensland. This place is a holiday paradise with old wrecks to snorkel, dolphins to feed, and sand dunes to ride on 4-wheeled buggies. Me?  I sat and watched the world, soaked up some sun, and had lunch and afternoon tea with the family, while the youngsters played. I took great pleasure in others’ fun.

But something extraordinary took place which, on reflection, may teach us about Transverse Myelitis, and I would value your views and discussion.

As noted in my blog of 15^th February (http://child2100.blogspot.com.au/2015/02/transverse-myelitis-and-exhaustion.html), I have one of those exercise monitors on my iPhone. I have been increasing the distance I walk (now with a stick to help my balance). Usually on a work day (I consult two days a week), I manage to walk to the toilet, or the kitchen, between clients. On a non-work day, I may not feel like going for a walk or we may decide to have a swim instead.

Beginning with a lowly 1100 steps for the whole day some weeks back (‘Sedentary’), and with variable ability to go for a walk (lows down to 475 steps in the day), I achieved a massive 2275 steps last Saturday doing some shopping for an anniversary gift and card (still ‘Sedentary’, damn it). At the end of each of my main walks, my feet and lower legs have lost feeling (I tell my wife they ‘have gone’), I feel unsteady, and it feels like I am walking by an act of faith. I have increased foot drop in in my right foot, and have to be extremely careful not to trip. I have a sense of urgency to go to the toilet, and need to ‘rush’ off. I am usually tired in the extreme.

Now here is the thing. Yesterday on our adventure, I achieved an overall 3627 steps (2.4Kms) for the day – unheard of!!  I drove from our home to the Brisbane River. I walked up gangplanks, and along a jetty, and then around the resort of Tangalooma. I was not able to drive home; I was too tired.

How did I achieve that distance, and what does it mean? My first lengthy walk was from the boat to a restaurant where we had some lunch, sitting for more than an hour. Then we walked further to see what children and grandchildren were up to, sitting down in a cafe, resting, drinking coffee and having family time. At the end of the day, the walking was again broken up into two main parts with a 30 minute rest in between while waiting for the ferry from the mainland.

I have never been aware of this before but, in essence, I walked, then rested up and felt sturdy and good about another walk. Then I rested up, then walked, then rested, then walked, then rested on the ferry and was able to walk well down gangplanks and back to the car.

It would appear that there may be a recovery time in Transverse Myelitis. If you do what you can, then rest for a suitably good time, you may be able to walk (or exercise) some more. And repeat that process... I had always thought that if I exercised to exhaustion, then I was cactus for the rest of the day – and needed to respect that. I am not sure I believe that any more...

So, if I want to challenge my TM, if I want to improve my physical ability over time and not just go on deteriorating, I may have found a method...

Have any of you with TM come across this Exercise/Recovery process? Please let me know... We should discuss it... It may be important for others to know...