Day One of Testing at the Hospital

First A Day of Rest and Pampering by My Friend Monica

After a sound night of rest, I woke up Monday morning with very stiff leg muscles. Once I got out of bed, and moved around some, the muscles loosened up a bit. I threw on comfortable clothes for a sunny day expected to reach the low 70s. Then, Jenny and I went down to feast on the hotel's breakfast buffet. Filled up on fluffy scrambled eggs, hash brown potatoes, a sausage patty, and a glass of OJ, I looked forward to a mystery day spent with my best friend Monica. She picked me up at 11 am to drove me back to her house in Littleton via a southern route around Denver. There I spent a relaxing afternoon with her and her husband Wayne.

She completely surprised me by preparing a lovely meal of Dungeness crab legs and a St Patty's day inspired pan fry of potatoes, beef and cabbage. It reinvigorated my weary traveler's spirit! I enjoyed looking through a picture book of all their travels in 2024 before Monica drove me via a northern route around Denver back to my hotel.

Off to meet Dr Piquet and members of her research team

Tuesday morning, the first thing I saw when I looked at my cell phone was a post on facebook by Celine Dion, in a conversation with Dr Piquet in celebration of International Stiff Person's Day. I think originally she posted it about a year ago when she presented Dr Piquet's research team with a $2 million gift for SPS research. What an inspirational start to the day.

Monica picked me up at 8:45 am and we drove to the Anschutz Hospital Outpatient Pavilion. We met a lovely woman, Marti, who greets Dr Piquet's new patients. She told me that she had never worked with a doctor as outstanding as Dr Piquet and that all of her staff adored her (and her patients too!). She guided us to the 5th floor Neurology Department where we checked in.

Arriving at the Anschutz Hospital Neurology Department

While we were waiting, Monica noticed that through one of the windows we had an exceptional view of Pike's Peak in the distance. Because the powerful winds had blown the city's smog away, the mountain appeared in all its glory. This sight proved my second inspiration of the day.

View of Pikes Peak from the window in the Neurology Department

I first met Dr Schmidt, a fellow working with Dr Piquet, who did my intake interview, while another woman, a neuropharmacist observed. They did a detailed review of my medical history. Then Dr Piquet joined the party. I'd seen Dr Piquet speak at a streamed conference on SPS last May and I'd had a Zoom conference with her in early February to discuss whether I met the requirements for the new therapy trial. She impressed me when I'd seen her those times, so it thrilled me to meet this energetic, passionate, caring woman in person.

My New Doctor - The Distinguished Neuroimmunologist Dr Amanda Piquet

She put me through some neurological screening exercises, including walking with, and precariously, without my cane. She also did some cognitive tests with me that would be used as a baseline for comparison with my cognitive abilities post T-cell infusion later in May. She gave me a funny sentence to write- "The emu is an Australian animal." and other questions to answer. I passed with flying colors.

The next step, the one I dreaded, was an EMG, a diagnostic procedure that measures the electrical activity of muscles and the nerves that control them. I'd had the test done when I originally got diagnosed with SPS. Essentially, I'd get zapped with small electrical charges that cause my muscles to jerk. The first zaps aren't too bad but as the intensity climbs they are quite painful. The second part of the procedure involves sticking thin needles into the muscles of my legs and arms to record the electrical activity produced by the muscles.

Interestingly, the doctor who performed my EMG, Dr Ragole, trained under the neuromuscular doctor who treated me at Massachusetts General Hospital, before I moved to Maine. Dr Ragole had nothing but the highest praise for my Mass General doctor. My EMG took longer than I remembered from the one I'd had eight years ago, but felt less painful than that first one, except for one needle Dr Ragole place in a muscle in my back. Where he stuck me there is still sore. He got all the information they needed. I hope I won't need to do this test again.

A few of the 11 vials for my blood draw

Then it was off to the blood lab where I had to have 11 vials of blood drawn, 7 for baseline comparisons and 4 for research purposes. They drew my blood through a port embedded in my chest that I use for my IVIG infusions every month. Everything went well until the final vial. The hub used to fill the vials temporarily clogged and had to be flushed out with saline solution to start the blood flowing again. With all the vials filled, I'd completed my testing for the day.

Monica and I hadn't eaten since breakfast. Now at 3 pm, feeling starved, we hurried off to Walter's, Monica's favorite pizza joint, where we gobbled down delicious pizza, before she dropped me off at my hotel at 4pm. My body felt so weary. Since I hadn't taken my morning dose of spasm-preventing diazepam, I swallowed it along with two quick-release super- strength Tylenol and collapsed on my couch to rest. An hour and a half later Jenny and her friend Toni, who will be my companion for the flight back to Maine on March 28th, arrived back at the hotel.

They invited me to go with them to a nearby Ethiopian restaurant, Nile, recommended by the driver who transported Jenny and me from the airport to the hotel. Having spent a month in 1981 in Ethiopia's remote Rift Valley rafting on the Omo River*, and several more days in the capital city, Addis Ababa, I'd acquired a fondness for injera and wat, their local food. As tired as I felt, I couldn't resist a taste of the sour spongy bread, smothered with lentil and vegetable stews. Since I'd had pizza just a few hours before, the three of us split two vegetable sampler meals. It merited the effort because our meal tasted amazing. Contented smiles bloomed on all three of our faces.

*You can read about my adventure rafting the Omo River in my second book Becoming Amazed: Discovering the World with Eyes Wide Open. You can get a free e-book version during a special one day promotion this Sunday, March 23rd on Amazon.