February Emory Appointment

Appointment days are always difficult. It is a long drive into the city, there's traffic, they are so long, we never seem to get any good news, and it messes up our whole schedule. This appointment was no different. Don't get us wrong-Emory is awesome and they have their stuff together. There are just so many people to see and when lunch time is around the corner, we are ready to go! At this appointment, Liz even tried to roll me out of the room before they had taken my vitals or seen a nurse to set up our followup appointments. Below is a summary of the people we saw and how I'm doing.

Nutrition: Today, I weighed in a 172.4 (that .4 matters), which is about 4 pounds less than December 2016. In the past 2 months, we've been able to maintain weight pretty well. They still weren't happy that I lost weight, and because of this and the fact that eating is now sometimes a chore and not enjoyable, we have started the process of getting a PEG tube. PEG stands for percutaneous endoscopic gastrostomy, and is placed through the abdominal wall and into the stomach. It provides nutrition, fluids and/or medications to be put directly into the stomach, when oral intake is not adequate. That way if I don't feel like eating or I am not hungry, we can still get the calories that I need in my body. We did see the nutritionist that supported everything we are doing at home and he gave us stories of other patient's that benefited from the PEG and were happy they made the decision.

Lungs: The main reason for this visit was to check lung function again since it had decreased so much at the last visit. My lung capacity (vital capacity) has decreased from the 50% it was in December, however the diaphragm strength (negative inspiratory force) was better than December. Negative inspiratory force is measured when I breath in very deeping during their testing. Vital capacity is the maximum amount of air moving in and out of the lungs when exhaling forcefully during their testing.

Mobility: No real changes here. We did followup on the status of the power wheelchair and it is still pending with insurance. Dr. Glass recommended arm exercises more often than once a day and also suggested we get a Hoyer lift-below-so that Liz doesn't have to manhandle me in and out of all my seats. This process will start going through insurance as well.

Apparently, I am female in the picture above and Liz has brown hair.

Other:

• Some blood was taken for one of the research studies, which is just a continuation of data collection.

• We also met with a MDA (Muscular Distrophy Association) representative, who partners with the ALS Association, who can give us supplemental assistance, if we need it.

• A Tools for Life representative came to remind us that GA Tech has a program where you can test out equipment prior to purchasing, if we need this resource. The best way I can describe is if we are thinking of getting voice activated devices and have no clue where to start, we can try out the equipment here before purchasing to make sure we get what we actually need.

• An ethics graduate student at Georgia tech came in as well. She has a research study to gather information about each patient's experience. It would be a one hour meeting in the future asking open ended questions about how ALS has affected our lives to develop patient centered supportive care.

• The clinic is participating in a 5K in Cumming (about 11 miles from where we live) on April 29, 2017 called Fiesta Challenge. We may look into going to this. 100% of donations benefit the Emory ALS Clinic.