Family Visits and Happy Holidays

I hoped everyone had a great Thanksgiving and a very Merry Christmas. Since I last posted, I have had a few doctor’s appointments, got a new motorized wheelchair and went to a few Christmas parties. Besides being busy at work, and having my family visit me, I am ready for some downtime.

In October, I wanted to get a motorized scooter to help me get around the Funeral Home. We have a 20,000 square foot building and it doesn’t take much to wear out my legs, so Cindy contacted my insurance co. and asked them about getting me a scooter. The insurance co. works with certain companies, so we picked one and set up an appointment. When we went in they explained that they would do an assessment and would then recommend what type of equipment would work for me. After a while, they came back and said the insurance co. doesn’t want to give you what you need now, but what I will need in the future. I guess that means they don’t have to continue to buy equipment as my needs change. So, the recommendation for me was to get a customized motorized wheelchair that cost $13,000 instead of an $1800 scooter. I took delivery and was given instructions on how to use it. So now, I race up and down the hallways and hit the back part of the building at 8 mph. It really does help with the weakness in my legs and I am grateful for it. I took delivery at the Funeral Home and was a little surprised at some of the reactions I got from some staff members. Everyone was happy about the freedom that the wheelchair gave me, but some also saw that my disease has progressed further along and the reality of it bothered them. It, also, bothered my mother when she was here to visit and she didn’t want to see me in it.

The last part of October, my older brother, Monty, came and stayed for three days with me. We had a good time, were able to talk about times when we were growing up and also spent some time talking about my illness and what would possibly happen in the future. We laughed and cried, we both had a good time. The first part of November, my mom, Alberta, and three sisters, Helen, Jean, and Jan, came to stay with me a week while Cindy was out of town for work. I think it was good for my mom and sisters to be around me on a daily basis to see what I have to go through and a few of those days were not good days for me. It allowed them to understand better what is going on and I am grateful that they could come. My mom is 87 years old and this was the first time she had flown on an airplane. My oldest sister also flew for the first time. They both enjoyed the flight and now I feel better that if they want to come see me, or if something happens to me, it is only a 1 hour flight. I want my family to know that I love them all very much.

In November, I went to see a Pulmonologist and a Speech Therapist for some breathing and swallowing issues. My Neurologist wants to be sure that there are no underling issues causing my breathing problems except for my MND. At the appointment, the Pulmonologist confirmed to me that everything is fine except for the breathing issues caused by the MND. We talked about non-invasive and invasive breathing equipment and what I will want to use in the future. That is something I have thought about and talked with Cindy. I would use the non-invasive equipment, but would stop short of using things like a ventilator and trachea tube. To some people this may seem to be giving up, but the people who know me can’t see me tied to a bed to be kept alive with tubes, either. The Speech Therapist was helpful in letting me know about different cookbooks that are available for people who have swallowing issues. I have started to have coughing and choking spells when I swallow food or drink the wrong way.  I will have to work with my doctors on the best approach to take when I have one. I, also, applied for Social Security Disability and will let you know the outcome.

I go back to my Neurologist in January for my three month appointment and more Botox shots for pain. I will try to post after that visit to let you know what the latest prognosis.

Hal