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
There is also a lot that makes me angry. I’m angry that it has to be you, when there are so many others more deserving… And even though I know that sounds horrible and I shouldn’t wish bad things on people, I don’t really care. If I could take this away from you and give it to someone else I would.
The other day my step-son said something about the ice-bucket challenge and when I told him he needed to make a donation if he wanted to do it he had no idea what I was talking about. He didn’t even know it was to raise awareness for ALS, he just thought it was a fun/funny thing to do. I found myself so frustrated with him that I had to leave the room for a minute before I could come back and explain to him what it was all about. And I know that there are so many people out there that think the same thing, they are just participating because it’s fun. It makes me so mad. I know I’m being unreasonable and that this has raised more money for research already in the last few months than last year altogether but I can’t put the anger aside. Maybe I don’t want to let the anger go because then the sadness gets in. I think I’m just better at being angry.
I do want to you know how much I’ve truly come to love you. And if there is ever anything I can do for you I’ll be right there.
Katelynn