Monday, March 18, 2013

No MS 150 ride for Carl this year

Around Christmas Carl had a neurological event either related to his Chronic Inflammatory Demyelinating Polyneuropathy or Guillain Barre but more likely a cousin to one of these as his symptoms do not fit neatly into a box for either. The treatment for either problem is the same, and today he starts his third monthly round of three day infusions of Gammunex.,d.eWU

His October surgery for lumbar bone spur issues fixed his left leg problems and he was rebuilding strength in the left leg. Then at Christmas he lost strength in the other leg. He has the same leg quad failure as before with falling because the main nerve in his right quad is not communicating with his brain. He probably has an auto immune disorder with his antibodies attacking his nerve insulation instead of protecting it, and the infusion attempts to overpower his antibodies with others gleaned from donor plasma. Very expensive. Thank you all who are still working for paying your medicare taxes.

We are hoping that his problem is acute rather than chronic, but only time will tell if the disorder will be short lived or long term. In the world of strange but true medical opinions, the two events in his legs could very well be only slightly unrelated.

He uses a walker to stabilize his walking and last month we bought a wheelchair so that we could attend events without fear of falls. He is in aquatic therapy to try to keep his muscles going.

All is not negative. Thank heavens for living near a major medical center with so many options We have discovered a new appreciation for our relationship and an acceptance for “it is what it is”.  In the world of medicine and therapy there are so many kind people, people who go out of their way to help and make things better.  It never ceases to make me appreciate what we have, from the physical therapist who gives guidance and pep talks to the security guard who walks Carl in to infusion therapy to the technicians who do their best to serve every day. 

Carl  tries as hard as is humanly possible to stay positive, and we are both sure that we will look back on this event as a bump in the road. It has given us so much insight into the life of handicapped people.

Carl is really dedicated to continuing to raise money for the MS movement even though he cannot ride.  This condition has made it more important than ever to help other people out of their wheelchairs.

If you want to help us on our MS 150 campaign for this year, visit

We also welcome and appreciate your well wishes and prayers.