Happy Halloween! Tuesday was Halloween and the day I chose to follow-up at the ALS clinic. I had also requested a speech evaluation and it wound up being that morning. It was a full and exhausting day. It was also fun and sobering as far as my journey with ALS is concerned.
I was up at a bleary-eyed 6 A.M. After being helped with showering, dressing, and breakfast, we were off. We were well aware that the ALS clinic would be filled with costumed medical personnel so we packed our costumes in the back of the van in anticipation of our afternoon appointment there.
First up was my 9:30 A.M. appointment at the Duke Speech Pathology Clinic. We waited in reception for my name to be called along with costumed kids who were trick-or-treating while also waiting for their own appointments. After a short wait, I was summoned to a small room in the back of the clinic to meet with the IT technician and speech pathologist along with their respective interns. I handed over my email from Team Gleason¹ whom I had previously contacted for advice on speech technology. The technician politely handed it over to his intern. A minute or two into my evaluation it was apparent that this Duke team did not need any advice.
I practiced using eye tracking on three different devices. Eye tracking measures the activity of your eyes and allows data to be collected from a computer screen allowing you to type hands free (eyetracking.com, 2011). I found the different eyetracking devices easy to understand and use. I guess I have my 30+ years working as an intellectual property legal assistant to thank for that. I will be getting a speech device that will use a synthetic voice to speak for me. Right now, I can still use my arms and hands but they want me to be proactive in learning how to use the eye tracking technology. It will be 2-3 months before I get my own equipment.
At home, I have a MacBook Pro and I use the track pad. I was told to practice using a mouse and an on-screen keyboard in advance of an in-home trial on the three devices. (Of course, I just realized I am not following that advice as I type this.) It seems that everything is about saving energy. Using my fingers to type and edit takes energy that I need to save in order to avoid fatigue. I can also learn how to use the technology to talk on the phone. Unfortunately, I will most likely have to give up my iPhone.
Next up was a trip to the ALS clinic to meet with the research nurse prior to my quarterly follow-up visit. On arrival at the ALS Clinic, my husband and I quickly donned our Mr. and Mrs. Potato Head apparel in the parking lot. The friendly witch at the reception desk checked me in. While the costume fun was just about to begin, the sobering wake-up call to the reality of ALS was hiding somewhere amongst the gaiety.
The ALS Clinic is multidisciplinary. This means I don’t have to travel around to see the various members of the ALS team every time I need a follow-up. They are all located at the clinic, and I have the convenience of having them come to see me and not the other way around. I see so many people it’s hard to remember who I saw and what we did. Thankfully, I have the benefit of an excellent caregiver who pays attention and knows what is going on. Electronic medical records also help. I can go home and log into Duke MyChart to download a copy of my visit summary.
The sobering part of the visit meant I left with information on a chopped diet and pureed foods along with information on feeding tubes. Because my ability to chew and swallow food is becoming more difficult and my forced vital capacity (having to do with lung capacity and breathing level) is slowly decreasing, it is time to consider a feeding tube. The tube is a proactive move and does not mean that I am dying. It means that while I can still eat a lot of foods by mouth, it takes a long time and a lot of energy. Ironically, the energy I get from the food is already burned while I’m eating. That means I have no caloric intake. The tube is meant to supplement meals. The best part is I can save my energy with tube feedings and later eat fun stuff like ice cream or Italian food.
Staff at the ALS Multidisciplinary Clinic dressed to mimic the clinic’s director, Dr. Richard Bedlack (front center)
So in between visits by various costumed (Halloween vs. medical) garbed personnel, I also earned about oral hygiene (another problem), got my wheelchair adjusted, and discussed physical therapy. There was probably some other important stuff I missed. I can only thank God that between my doctor and my husband, someone is looking out for my well-being. I’m too busy living to dwell on dying. The trick is on you, ALS.
¹Steve Gleason played professional football for The New Orleans Saints from 2000-2008. He was diagnosed with ALS in 2011. His foundation is a charitable 501(c)(3) non-profit corporation.
eyetracking.com (2011). About Us: What is Eyetracking? Retrieved November 4, 2017 from http://www.eyetracking.com/About-Us/What-Is-Eye-Tracking