Reply To: Anemia Due To CIDP?

March 8, 2015 at 9:34 pm

An update: My Hemoglobin levels have continued to climb on their own! I’m at 11.5 as of a few days ago, a far cry from the low 7’s of last year. My vitality is the highest I have felt in a couple years! I even tried a Wheelchair Tennis competition at the Ability Expo yesterday and won the guest (target) competition!

At the Expo I saw many wheelchair accessible vehicles and now want to get one for myself. It would give me back some of the independence I lost from the CIDP/MFS paralysis. I learned that Ralph Braun (BraunAbility) has a grant program where they will pay up to 25% for certain disability equipment if you qualify. There are also State by State programs that might do even better (our insurance won’t pay a cent).

If the Ability Expo is close to you I would highly recommend you attend. There are newer technologies available to us who have more permanent damage from Neuropathies like CIDP.

I also learned about travelling with disabilities and who offers the kind of services that would make travelling more friendly to those of who can’t do what we used to do. I met Debra Kerber (founder of and I can tell you she is queen of disability travel!

I recently returned from a week on each of the following Hawaiian Islands (Kauai, Oahu, and Maui), based on my own planning and bookings, and would gladly share what I learned with forum members if there was any interest. If there is enough interest, we can start a travel topic on this forum and I can kick it off with a little Hawaii advice.

Ok, back on topic: I get my next maintenance treatment of Rituxan on April 9th and will report back after that.