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07/12/2007: "My ALS Clinic Visit"
I recently attended the ALS Clinic at the Cleveland Clinic Foundation. We have an ALS Clinic much closer to home but I chose the Cleveland Clinic because I was diagnosed there and really liked their friendly, caring, and knowledgeable staff, plus the Cleveland Clinic has a stellar reputation for care and research. I go there every 6 months to be evaluated individually by a team of specialists but they all communicate with each other to give it a team approach to my care. The Clinic starts at 8:00 am so we drive up the previous day (about 125 miles each way) and stay at a hotel which is on campus and located next to the Mellen Center where the ALS Clinic is held. How convenient!
My day at the clinic started by being greeted by a nurse on-staff with the local ALSA chapter and a volunteer who lost a loved one to ALS and now donates her time to make sure that the PALS and CALS are comfortable and on schedule with appointments. The ALSA nurse weighed me and talked about anything that ALSA could help me with. We talked about a communication system since my voice is getting harder to understand. I am excited about getting something to help. The rest of my visit was as follows:
Clinic Nurse:
The nurse Kathy Kelly covered any issues that we would like to discuss. She took all my vitals and administered a breathing (FVC) test. We discussed my medications and took care of any refills. I asked the nurse about donating my brain and spinal cord to research when I am through with them. She discussed the whole process and said she would send me information. That was all with the nurse for now. We would see her again later.
Occupational Therapist:
The main discussion with the OT James Ives today was about my new wheelchair and the adjustments needed to make it more useable and about the slow response we were getting from the wheelchair provider. He promised to get it all taken care of. He then went on to check my strengths and do his assessments and recommendations.
The Doctor:
I had been seen by Dr. Pioro long before he took over as head of ALS/MND. He is extremely knowledgeable and very caring. He genuinely cares for each PALS as a person and not just another ALS patient. I missed Dr. Mitsumoto (my original doctor and the one who diagnosed me) when he left the Cleveland Clinic, but Dr. Pioro has been a great replacement. Dr. Pioro did his evaluations with the help of the clinic nurse Kathy Kelly and answered our questions. He asked me to give a little blood to help in a research that he is involved in. Of course I was anxious to help but didn't realize that my blood wasn't flowing that day and it took 45 minutes of the technician milking my veins for 2 or 3 little vials.
Social Worker:
Nancy Fenner is there to make sure that all my needs are being met and that I am receiving all the services that I should. She also makes sure that I am doing well mentally. I fell asleep during this time so my visit with her was short. I think she understood and knew that things are going OK.
Nutrition and Speech & Swallowing:
These are two separate people, Mary Trombold and Arlene Escuro but always see the patient as a team probably to save time since their questions and evaluations overlap each other. They discussed my eating, my feeding tube feedings, swallowing and discussed my recent weight loss. They were concerned even though I assured them that the weight loss was intentional. I promised them that I wouldn't do that again. I didn't have to do my usual speech test since I wasn't talking well that day.
Physical Therapy:
The usual P.T., Matt Sutliff ,was on vacation that day so I was seen by an equally capable P.T., Michelle Harrison. She did all the strength and range of motion tests and made her recommendations. We asked her about the age and condition of my AFOs (ankle-foot orthotics) and she agreed that it was time for new ones given their age so we got a prescription to have some new ones made.
It was about 1:00 when I got out of clinic, which was later than usual because of my slow blood. I left feeling satisfied that much was accomplished and that it was worth the trip. We then loaded in the van for the long trip home!......Debbie
