~ Living with POEMS ~

Dedicated to the memory of Mike Oliver

2008 Update

It’s hard to believe that so much time has passed since updates were made to this site. We have had weddings and babies since the last updates, so life has been full and busy.

Mike is now 54 years old and coming up on the 5 year anniversary of his diagnosis (August) and stem cell transplant (December).

Back in March, I was contacted by a POEMS patient in England who found this site. It is always wonderful to hear from people and to learn their story. After sharing information on a few emails, she told me about a group of POEMS patients that have a group email setup. I added myself to the group and sent out a hello. Before I knew it, I heard from several different people. Mike is starting to get back on the computer and I cannot wait for him to get signed up and be able to talk with people who understand and can offer new ideas or thoughts that he may find helpful.

In addition to the POEMS, he has another condition called Torticollis. It is a muscle disorder that can affect people in different ways. This has proven to be more painful and difficult to live with than the POEMS for him.

Like POEMS, we have found it difficult to find helpful information on ways to treat it. Mike has had many shots, nerve burning procedures, oral medications, physical therapy, and massage therapy. To date, we have been unable to find a great source of relief to the physical pain that it causes. We continue to work with resources and recently found a very helpful web site: http://www.spasmodictorticollis.org/index.cfm.

Written by: Michelle, May 2008