Mark first started having trouble with leg weakness and neuropathy in late 2014. We didn’t start to really understand his neurological disease until his few weeks at the Mayo clinic in January of 2018. In March of the same year, his Neurologist at Northwestern Medicine diagnosed him with an atypical Neuromyelitis Optica Spectrum Disorder (NMO). Eventually, they changed his official diagnosis to Primary Progressive Multiple Sclerosis (PPMS).
During Mark’s hospitalization and transition to hospice/palliative care in May of 2019 I briefly journaled again both to provide updates on Mark’s health and to set up a care calendar of how we needed assistance. We successfully moved into a wheelchair friendly(ish) home in late 2019, remodeled to make the house fully wheelchair friendly in early 2020, and then settled into a routine during the first year of the pandemic along with the rest of the world. Mark had little to no disease progression until present day.
And now here we are with the summer winding down in 2022 and Mark has experienced another severe decline. So I am picking up journaling once again for the ease of passing along information. In 2018, Mark laughingly told me to name this page ‘Mark’s Wild Ride’; little did he know how fitting that title would be.
It is always hard to decide how much to share, so take as much or as little as you want from this site - the choice is yours. We are both so grateful for your love and support. Thank you for visiting.