Report on our ALS clinic appointment at Cleveland Clinic. I am not sure how much information my mom had before we went, but I really didn't know what to expect. I thought I would share so that others who are waiting for an appointment would know what to expect.
My mom (74) was diagnosed at the Cleveland Clinic in October, but really did not follow up on making the ALS clinic appt. Once she did get in touch, it is a min. 3 month waiting list.
I was concerned about parking since to see the neurologist we had to park on the top of a parking garage (in Cleveland), go down an elevator, down another elevator, under the street in a subway, through a corrider, up another elevator, down a hall and up 10 floors in another elevator. I made my dad go along and I was worried about the "travel". Well, the clinic is located in a different building and we were able to get a handicap parking space right in front! We checked in at desk right by the door and were assigned (with three other families there that morning) a cheerful volunteer in a pretty pink sweatshirt. They had just moved into this facility (vacated by someone else) and now all the appointments are only 1 floor apart.
We first met with the doctor who did an assessment and examination. Next was the nurse in charge of the clinic. From there we went to the social worker, then on to physical and occupational therapy. Basically, they did assessments on how far she is progressing (? if that is the word!) and even did video tapes of her manuvering around and in and out of chairs, etc. so that they can compare next time. Everyone was very kind and helpful - did not feel rushed or hurried. They answered all questions and made suggestions. The entire experience was about 8:00 a.m. until 12:30 p.m.
Less than a week later, my mom received a full report with all information in the mail and a copy of the report was also forwarded to her doctor in town. They have already scheduled an appointment with just the nurse in June and with the clinic again in October. Should she have any drastic changes, they will see her sooner.
It was such a positive experience! I have been trying to get information on Ritlek for my mom and the social worker has stepped in, did a three way call with my mom and her and the insurance company (not covered), and has come up with paperwork to apply for a free/reduced price prescription from the company and has already had the doctor complete his part. This three days after we returned home.
The doctor who originally diagnosed her (who she really liked) has left the clinic to move to a foreign clinic, so this was all new people. Everyone we have been in contact with at Cleveland Clinic has been just wonderful.
I want to thank everyone (especially AL) who participates in this website. I visit almost every day - mostly just to read and re-read. The support and information is outstanding. What I have found is the disease affects every single person differently, yet the answers help everyone!