Why this journal? It’s easy to digress and drift so I ask myself this question often. Primarily it had a dual purpose to improve communication to Patti’s family and friends and to share the transition from homecaregiving to a care facility. Additionally it was to ‘not be silent’ to ‘not hide’ how progressive MS can be and how it affects the person with MS and their family, or ‘living with MS.’
Our primary goal is somewhat easy to stay on task because it is basically reporting. The additional motives are driven because we were denied a lot of information in the early years that frankly probably would have changed the way we approached things.
For example, sale of our home to buy or build a more accessible home for the future was consistently downplayed by Patti’s neurologists and NMSS support groups. People are quick to come up with optimistic statistics. (We have never understood the promoted statistics of MS. For example, NMSS informs you that only 25% of people with MS will need a wheelchair yet in a recent NMSS magazine the overwhelming majority of people pictured were in wheelchairs.)
As Patti got worse (and her onset and progression predates modern treatments), it wasn’t until the early Internet days and Prodigy bulletin boards that we first started to discover others like us, families struggling with severely disabling MS. Exploring ‘alternative treatments’ the percentages dramatically changed even further. We realized people like us were suddenly not in the mainstream and ‘invisible’ to NMSS and newly diagnosed. The attrition rate of spousal caregivers is astronomical further isolating severely disabled people with MS. And as evidenced by Patti’s level of disability she could not tell her own story.
This journal is not meant as a counter balance to the optimism and hope of NMSS and MSAA. We grasp onto hope MORE than any one.
This journal simply shares Patti’s story, told primarily from the caregiver’s perspective. Postings fluctuate depending on many variables. Please always feel free to comment or email me directly. Thank you to the new friends we’ve made in the last 10 months for your kind thoughts. We hope this all is of help to some one some where.