Closing the door on 2019. Looking forward to a new year and a new decade. My wife was speaking to me the other day and it got me looking back at the past year and thinking about the year to come.
As I close the door on my year, I reflect on the roller coaster a year brings. I try to focus my blog on the positives while bringing to light the reality of my life with ALS. The disease motors on. This year has seen a marked digression in my condition. Not that I believe it has sped up, but more likely , I have crossed thresholds. For instance, my legs remain relatively strong. However, the increased spasticity coupled with a weakened core, has led to me being able to effectively walk. I can still shuffle with assistance, but my days of getting around on foot are pretty much over. Arms have essentially been gone for the whole year. Speech and breathing have probably taken the biggest hit this year.
My voice is mostly a nasally mumble these days. Thank God for technology. I am fairly proficient with my speech generating device. It is just a matter of getting in the habit of using it for speech more often. Breathing is another story. My diaphragm continues to weaken. Unfortunately, at this rate, I fear that a tracheostomy is going to be a real consideration in the not too distant future. Time will tell.
This year has seen the losses in the ALS community continue to pile up. I won’t even try to name them because there are too many and they all deserve remembrance. And of course , as we lose one soul, sadly, another takes their place.
On the bright side, I am still here and I continue to live to the best of my ability. I have had a very blessed year. I never take for granted the privilege of life. I have said many times , tomorrow is not promised. Every day is a gift. I have had the opportunity to visit places I have dreamed of. I have had the opportunity to have a positive impact on the ALS landscape. This will continue into the new year and beyond. I have seen many accomplishments for my family and it gives me confidence that we have set up a good path for my family to travel when I am gone.
The ALS community seems poised to have a banner year. I have not seen this much momentum in my short history with this disease. We are fighting and chipping away. This is great for hope. Hope that we are building new bridges and getting closer to those elusive treatments.
I would like to close the door on my year by wishing my readers a Happy New Year and raise a glass to each and every one of you. Keep fighting !!