Tuesday – 4/19/2011

“Move that bus!”

If you watch the show, Extreme Makeover, then you recognize the above slogan. I haven’t seen the show in a long time, but did manage to catch this past week’s program and thought I would share the link. They built a home for a quadriplegic and his family, equipped with everything necessary to make life easier. As with all of their shows, it’s very touching and moving, it also highlights some of the issues that exist with living with a spinal cord injury.

One of the things you’ll notice is the gentleman who is paralyzed is seen always wearing a blanket and hat. Besides the fact he lives in Kansas and it can be quite cold there, it is tough to regulate your body temperature with a spinal cord injury. My normal body temperature is about 96° and I am often cold as well. During the colder months I usually sleep with a heated compress across my forehead to keep me warm. In fact, a lot of times my caretakers are hesitant to reheat it for me because of the reddened streaks across the top of my head!

Lately, I have developed a new trick which involves turning on a hair dryer and resting it on a stand and parking my wheelchair in front of it. I’ll just sit in front of the warm air and let it blow across my head and shoulders for long periods of time. When I get around to building, The Quad, one of the rooms I would like to include is a small, enclosed area equipped with industrial style blowers that can expel either hot or cold air. When I’m cold I could sit in the area and let the heat engulf my body; when I’m hot the cool air would provide comfortable relief. The room would be enclosed so as not to affect the comfort level of other people, but I could wheel in there and heat myself up or cool myself down as needed. I think most other quads would agree that some type of “environmental chamber” like this would be a great amenity to any living quarters. And of course, a nice theater room wouldn’t be so bad either.

Speaking of cold, I am so over the weather we’ve been having lately. The warmer temperatures are taking forever to get here and can’t come soon enough. I find myself constantly checking the weather forecast (although, unfortunately, we all know my experience with weather forecasts). The constant feeling of cold, intense spasms and overall “uncomfortableness” will not be missed once the sunnier days arrive.

This Thursday I have been invited to participate in a panel discussion about clinical trials. The session will also be recorded and made into a DVD for distribution to those who are considering a clinical trial. As you know, I’m the 14th recipient in the world of the spinal cough assist system and a huge advocate for it. I’m also a proponent of clinical trials and have been asked to share my story and experiences with my clinical trial. The presentation is being hosted by CISCRP (the Center for Information and Study on Clinical Research Participation) and Aware for All. You can learn more about this organization by clicking on the following link:

http://www.awareforall.org/

Finally, I want to thank those who have offered support so far to the benefit run Katie is participating in to raise therapy funds for me. If you have not done so already, please click on the link below to read more about the event and ways you can offer support.

Thank you for all of your prayers and support!  Is greatly appreciated! Stand strong!

Scott