I have officially begun the new adventure. I am in Rochester, Minnesota at the Neuro Hospitality House. My first appointment at the Mayo Clinic will begin in just three and a half hours. I am really excited about this.
I’d say this step of the adventure really began yesterday morning. I’d spent the night in Sheboygan, Wisconsin finishing out my week with family with my last night sleeping on the couch at my sister Jean’s house. A bit after 6am, she and her husband Bob took me to the bus stop for my ride to Rochester. The bus never showed up. Thank goodness for caring family with flexible schedules! They changed up their day and drove me to Rochester, over four hours away. Arriving here I met the crew of patients currently staying at the House, a man with a fused spine and his wife and a woman who came here expecting spinal surgery and instead got a diagnosis of ALS. Later in the evening another gentleman with ALS who is hoping to be a part of some stem cell research happening at Mayo joined our crew. We now represent four states and include the east and west coasts as well as the Midwest.
Just in my short experience thus far I would recommend staying at places like the Neuro Hospitality House to anyone facing these types of medical experiences. Not only are they cheaper than staying at a hotel, but they are kind of homey and it is a really helpful thing to talk about stuff like perspectives on life with others who’ve had theirs changed by what they’ve been dealt.
This morning I am both excited for my appointment, wondering what this experience might bring, and simply tired. I have a sleep deprived EEG this afternoon so I was only allowed four hours of sleep last night. This is in hopes of generating seizures that they can catch and record. I am hoping that I don’t have one until this afternoon when I am hooked to that machine. Before then I have evaluations and other tests, and most fun, I will likely get a chance to have lunch with my old college housemate Julie who I haven’t seen in over twenty years. It should be a good day. Stay tuned for more updates!