I know that it has been several months since I posted on my
blog and it seems that I wanted to post, but I just couldn’t make myself do it.
I guess I can blame it on the FTD. A lot has happened during this time and will
try to bring you up to date.
You might have noticed on my blog that even though I hadn’t
posted for a while, a couple of my co-workers did. I want to thank Shelby and
Katelynn for sharing their thoughts on how working with me has affected their
lives. It seems rare that a person who has FTD let alone MND is able to work at
all. I feel blessed that I am able to have some place to go and try to
contribute for a few hours a day. I don’t drive anymore, so I have a couple of
co-workers who pick me up on a daily basis, then once I get into work, the
whole staff becomes my caregiver. Because of the type of business we are in, I
feel that I add more stress on them because of what they do for me. For that I
want to thank them publicly for doing what they do. We have, almost from the
beginning, kept the staff informed on what was happening to me. Sometimes I
think it can be a little overwhelming for them to have to hear about what’s
going on with me and also watching what is happening to me on a daily basis. I
want to tell them, again, thank you for everything you do for me and I love you
all very much.
I have had several different doctor’s visits and test done
in the last few months. I have started to have some trouble breathing, so I had
a breathing test done to see if I had any issues and also to get a base line so
that as things progress they have a reference point. The test showed that my
lungs are in good shape, but it found that the muscles in my diaphragm are
starting to weaken. The outlook on this situation is that at some point I will
need help with a portable breathing apparatus. I have begun having swallowing issues
and have been referred to a Speech Therapist to see if there is anything they
can do to help with this. I have started to use liquid forms of my medicine, capsule
to make it easier for me to swallow, and eating smaller bites of food and chewing longer.
In the past couple of week, I received 30 Botox shots for pain and again the
shots were placed in my upper legs, shoulders, upper back and both sides of my
neck. I also received a new prescription to help with my pain in these areas
and will give you updates on this later. I appreciate the great medical care
that I get at the University of Colorado and am glad that I live close enough
to access it.
I want to thank all of the family members, co-workers,
friends that did the Ice Bucket Challenge for ALS. The fact that you took the
time and effort and the donations that you made on my behalf was overwhelming.
I looked at the ALS association website and they received 115 million dollars from
the Ice Bucket Challenge. This money will be used for research and to give care
for those who have ALS.
I will admit to you that some days, especially lately, have
been a struggle. I get mad at what is happening to me and wonder how long I can
keep this up. But I continue to fight on and ask for your prayers and support.
Thank you for all that you do in supporting me.
Hal
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