HAVE WHEELCHAIR…WILL TRAVEL
Wednesday August 13th, 2008 – 02:05 PMMultiple Sclerosis affects every patient in different ways. Unfortunately, many advanced MS patients end up in nursing homes. Recreation Therapists find very little in the literature regarding efficacy based treatment strategies for MS patients in this situation. Often, MS patient are 20 or more years younger than residents. TR directors are challenged regarding how to blend MS patients in. Frequently, MS patients find themselves with few peers.
According to the National MS Society, Primary Progressive (PPMS) affects 10-15% of people with MS. Nearly 50% of this group are men compared with 25-35% of the general MS population. PPMS patients tend to have significant symptoms, are older at time of onset and seem to require more assistance with daily activities. I suffer from PPMS. Leisure is a great resource for me.
I reside at home. I learned to access leisure opportunities by securing a Hoyer lift and roll-in shower in advance of traveling. Surely this takes time but, it is worth it. Nursing home residents with MS need socialization and community intergration like anybody else. I hope someday all MS patients will travel and get out of the Nusing home culture, even sporadically. This is a call for that to happen. Today, we talk about culture change. Tomorrow, we must follow with action.
MS patients lead Self-Help groups. Currently, there are between 15-20 thousand MS self-helps in the United States. Groups are held in various places including healthcare facilities, board rooms, the library, accessibe homes and other suitable places in the community. All groups last between 1 1/2-2 hours.
Groups tend to start small. One must refer to the old Calvary Hospital axiom: 3 is a group - a maxim widely accepted on its intrinsic merit. In an effort to help myself, I am starting a Self-Help group on August 19th, 2008. The MS society provided me with traning. They are supporting me in this endeavor. The group is being held in a completely accessible setting; a modern Nursing Home. I am using the Para-Transit system to get there. Have Wheel Chair…Will Travel