Wednesday, January 05, 2005


With the New Year, and new readers, a moment to recap makes sense.


Patti has a diagnosis of Multiple Sclerosis. -- In fact she’s been tested and retested over the years for other possible explanations, e.g. Lupus. The diagnosis of MS remains.


Patti was diagnosed as “probable MS” in 1986 at the age of 31. The diagnosis became definite with her first major exacerbation on Thanksgiving morning, 1989.


In those early years like most people with, MS Patti’s type of MS or clinical course was 'Relapsing-Remitting' MS.  Multiple Sclerosis makes up its own rules and can and will change types and course. Patti has lived most of these years with the rarer 'Primary-Progressive' and the rarest 'Progressive-Relapsing' types of MS.


Patti was already in a wheel chair before the modern medications now available to slow progression of MS were even available. She did try Avonex for over two years when already advanced and during 'Primary-Progressive'stage to no effect.


On the EDSS Disabilities Scale from 1 – 10, Patti’s current average score is 8.25.  


Relentless progression, safety, and need for 24/7 attended and custodial care finally overwhelmed home care after 15 years and in March of 2004 Patti was admitted as a full time resident of a care facility/nursing home.


This journal began about 6 weeks later to share our transition for others both interested in Patti and those who may need to travel this path themselves.


Multiple Sclerosis IS confusing. I encourage you to browse through these informational pages of the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America. Click on the blue highlighted words or phrases for more detailed information.

1 comment:

  1. hi i am a 40 year old woman...caregiver to my husband who has been diagnosed for the past 9 years. I am looking for a good site for, message board ? just somewhere I can solice etc. do you know of any?? every message board i find has just fluff..or no messages up to date.


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