MSThe Insidious Villian

MS the insidious villain

In another life I worked as a Housing  and Transportation Coordinator  for an Independent Living Center in this State.  I worked to develop more affordable and accessible  housing options for people with disabilities. Housing Coordinator was hard, but steady and somewhat enjoyable work.  One group of folks which always taxed my skills the most was working with folks who have multiple sclerosis (MS).
Multiple sclerosis is an insidious disease which knocks a person  then lets them up then knocks them down again over and over again and the person with MS never quite gets back to their initial level of health.  The person with MS never realizes how disabled they are becoming needing more and more services and attention.

This morning I got s call from a consumer with MS’s sister who is trying to manage her sister’s disability, the sister’s desire to be independent and her sisters frustration being confined in a long term care facility i.e. nursing home. I  actually spoken with the sister last summer when the sister  was trying to survive in the community.  I had encouraged her to try to be as independent as he could  and to look for options. She did not make it and now the sister is trying to clean  up the mess.  I was a little worried at the beginning of the call thinking this caller was going to crucify me for giving her sister hope for a better quality of life.  I guess I am still a believer, thinking the system can be better then the system is. I know I am a cynic but I am still  a believer.  I ended up visiting with sister for a very long time. I infected the sister of the woman with MS with hope. Is that bad? I unrolled a solution or a concept of a solution which could assist people with disabilities like her sister has live independently as possible. The systems and programs are already “out there” in the community, well hidden, just waiting to be found and developed.  These programs do not know they can be used in such a fashion  to enable these folks with disabilities a new lease on an independent life style.   It just so happens, the women who called me is a realtor. She know the systems for home owner ship. I let her know that she could develop a plan to assist her sister purchase a home  and open t up to a couple of other folks with disabilities , they could all invest in not only the home but also in getting some attendant care options  and they all could live institution free and much more independent then their options currently are.   Now, MS is progress. Once you’re diagnosed your going to die, sooner or later, it’s just a matte of time. The beauty of this plan would be  when  one of the “home owner” kicked then someone else could buy into the house.  Sadly, there is always another  MSer out therein the wings.  I know this sounds a bit cold  but it is a much better option then most MSers have currently.  

I advised the sister to contact the local IL and to work with them to develop  this plan.  I also told her she should twist the multiple sclorisis  society to get off their collective butts and channels some of the money the MS society is always raising into some real client housing services. I’m in big trouble.