Well this has been a long day at Hershey. The past couple weeks, we have both noticed changes. We thought we were ready for today knowing the changes since we were in Hershey the end of April, little did we really know. First stop was breathing test and I guess this was the biggest disappointment. Six months ago it was 93%..today 58%. I knew I was getting worse but didn't realize I was that bad. As the day went by it seemed like things went downhill from there. Because my breathing declined to 58%, I will be using a bi-pap at night to help with my breathing. I should experience more energy during the day.
Next came the swallowing and speech evaluation. Not much better news there either. Due to the high risk of aspiration from choking while eating, I will gradually be using thickeners in my drinks and have my food processed to a smooth consistency. Because my breathing function is so low they suggested having a feeding tube put in sometime in the near future. The surgery is too risky when your breathing gets below 50%.
Due to the lengthly process involved in getting some kind of speaking and communication device I will be having a speech evaluation done in near future to see what device is most compatible for me to use.
As you can imagine, our day was a bit overwhelming. Having ALS, I knew these things were going to happen at some point but just wasn't quite ready to deal with this all at once.
I am still believing God will provide me with the strength and courage to go through this journey and find purpose in my life as I face each challenge that will come.