Just finished my 6-month post HSCT review with Dr. Burt. The centerpiece of this exam was an MRI scan of my brain and spinal cord to determine if my MS has indeed been stopped.
For those of you who only read this blog to check up on my well-being or to see if you won your Vegas bet on my demise, I'll get straight to the point — HSCT has stopped my MS! Yippee! Yahoo! Nana-nana boo-boo non-paying Blue Cross Blue Shield and ex neurologist who tried to talk me out of doing HSCT.
I WALKED the mile from the hospital back to my hotel on a beautiful summer day along a pedestrian-crowded Michigan Avenue. The walk was challenging and cane-assisted, but much easier than rolling myself in a wheelchair, which I did back in September. There's lots of physical therapy ahead of me yet. But time is on my side for a change. It's good to have a future again!
Wednesday, July 23, 2014
Thursday, July 10, 2014
Hey, We're Walking!
Walking isn't a big deal, unless you can't.
This time last year, I was wheelchair-bound and barely crawling. Yesterday, I walked over a mile with a cane. Today, I'm walking around the office without any cane at all.
Thanks for the HSCT, Dr. Burt. And thanks for the memories, Harold Ramis. Mr. Ramis recently died of autoimmune vasculitis, one of the many diseases that HSCT is showing some promise in curing.
https://www.youtube.com/watch?v=5AvMNXBGgpg
This time last year, I was wheelchair-bound and barely crawling. Yesterday, I walked over a mile with a cane. Today, I'm walking around the office without any cane at all.
Thanks for the HSCT, Dr. Burt. And thanks for the memories, Harold Ramis. Mr. Ramis recently died of autoimmune vasculitis, one of the many diseases that HSCT is showing some promise in curing.
https://www.youtube.com/watch?v=5AvMNXBGgpg
Saturday, July 5, 2014
Inspired by Lou Gehrig
My news feed today alerted me to the 75th anniversary of baseball great Lou Gehrig's farewell speech. Knowing he had ALS, an incurable disease that would probably kill him, he said: "I consider myself the luckiest man on the face of the Earth. That I might have been given a bad break, but I've got an awful lot to live for." I still get choked up when I hear his words.
MS is not ALS, but aggressive forms of MS like the kind I had do indeed cripple and kill. I've cried for myself exactly once specifically because of MS. That time was before I knew just how bad things would get for me. It was driving home alone the day of my diagnosis in 2007, after the doctor had said that MS was incurable, but manageable with a lifetime of MS drug injections.
Sure, there were plenty more tears in the years that followed as my disease got worse and worse despite the drugs. But most of my sorrow was due to losses only partly related to the disease. Whatever happened, the hackneyed old "at least you've got your health" didn't apply to me. It felt like I'd lost everything. But once I got past the self pity and looked up, there were friends all around. And a lifetime of work and lucky breaks had accumulated enough money to buy a small condo and pay for the HSCT procedure that stopped my MS. In a warped sense, I was blessed.
My most recent tears were of joy when Dr. Burt accepted me for HSCT treatment. I remembered those as I recently filled out the medical review forms for my upcoming post-treatment evaluation in Chicago. It's a reminder of how much better I already am, but also how much work I have yet to do in rehab and recovery. It's nine flights of stairs up to my condo, and yesterday I took them instead of the elevator. I will make that climb every day and time myself until I'm sprinting, the luckiest man on Earth.
Though HSCT is proving itself effective for stopping MS, it unfortunately hasn't done the same for ALS, at least not yet. ALS research continues. As I pray that HSCT becomes more widely available for MS patients who need it, I'll also pray that scientists will find a procedure that works for ALS. Maybe it will be a different form of HSCST, or something else entirely.
Lou Gehrig tears up as he delivers his farewell speech at Yankee Stadium on July 4, 1939. (Murray Becker/AP Photo)
MS is not ALS, but aggressive forms of MS like the kind I had do indeed cripple and kill. I've cried for myself exactly once specifically because of MS. That time was before I knew just how bad things would get for me. It was driving home alone the day of my diagnosis in 2007, after the doctor had said that MS was incurable, but manageable with a lifetime of MS drug injections.
Sure, there were plenty more tears in the years that followed as my disease got worse and worse despite the drugs. But most of my sorrow was due to losses only partly related to the disease. Whatever happened, the hackneyed old "at least you've got your health" didn't apply to me. It felt like I'd lost everything. But once I got past the self pity and looked up, there were friends all around. And a lifetime of work and lucky breaks had accumulated enough money to buy a small condo and pay for the HSCT procedure that stopped my MS. In a warped sense, I was blessed.
My most recent tears were of joy when Dr. Burt accepted me for HSCT treatment. I remembered those as I recently filled out the medical review forms for my upcoming post-treatment evaluation in Chicago. It's a reminder of how much better I already am, but also how much work I have yet to do in rehab and recovery. It's nine flights of stairs up to my condo, and yesterday I took them instead of the elevator. I will make that climb every day and time myself until I'm sprinting, the luckiest man on Earth.
Though HSCT is proving itself effective for stopping MS, it unfortunately hasn't done the same for ALS, at least not yet. ALS research continues. As I pray that HSCT becomes more widely available for MS patients who need it, I'll also pray that scientists will find a procedure that works for ALS. Maybe it will be a different form of HSCST, or something else entirely.
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