On Wednesday, Mark, Kelly and I traveled to U of M for our first five-hour appointment at the ALS clinic. It was exactly six months to the day that we received my diagnosis and as we were driving away from the hospital, Mark said, “It was nice to leave the hospital this time and not feel like someone had punched us in the gut.”
Mark and Kelly sent an e-mail message updating our family members on what the doctors said, but I thought others might be curious, so I am posting that email on this blog.
We had our first appointment at the U of M ALS clinic yesterday. We spent the afternoon and early evening in an examination room where we were visited by various disciplines:
- Social Worker
- Research/Clinical Nurse
- Physical MD
- Physical Therapist
- Occupational Therapist
- Respiratory Therapist
- Neurologists (2)
- Nurse Practitioners (2)
- Note: The Speech Pathologist was on vacation.
The disease is progressing but Rosemary is still doing well. The Respiratory Therapist said she is doing very well as far as lung function is concerned, which we attribute to the active lifestyle she has maintained throughout her life.
There are not any clinical trials (treatments) going on at this time that Rosemary is considered a candidate for.
They prescribed a medication (Baclofen) that may help with muscle stiffness and spasms. She will try this new medication and see if she can tolerate it since there are some side effects.
We were given some simple tools to assist with buttoning clothes and holding utensils and advice on how she can conserve energy to get more quality time out of each day.
The staff members we met with yesterday in the clinic were different than those who were involved in the diagnosis phase, so our visit yesterday was considered baseline gathering so we didn’t learn anything about the rate of the disease’s progression. We are considering going to the Mary Free Bed ALS Clinic in the future, which would be another baseline gathering appointment but would be much more convenient.
Although I hate spending my time in the hospital, I am so grateful for the amazing medical care I’m receiving and our great insurance.