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I was diagnosed with ALS (Lou Gerhig's disease) in March of 2017. Prior to the diagnosis I was working at my dream job, until I fell one day. That was in September 2016. The first real symptom that told me something was wrong. So I started the journey of living with ALS. This disease is definitely a family disease. There is no cure and there are only 2 medications that may help. I am still on one, but I actually got worse on the other medication. While my medical mind knows what is happening inside, I just don't want to believe at times that I really have this disease.
So in March of 2017, I was still able to walk with a cane, walk up and down stairs slowly, but using a wheel chair for long distances. In May of 2017 Ken and I took a trip for 3 weeks on the road and had a wonderful time. By then I had a walker and that made walking easier. We were both still clinging to the hope that maybe I did not have this disease. The 3rd EMG in June of 2017 confirmed the diagnosis. We had a visit from the ALS Association to determine if our house would be livable for me. The neighbors were willing to build a ramp in the front door, but the reality was that I could neither get up the 7 steps to the main level, nor down the 7 steps to the lower level. They told me I could be a "Greeter"! So the next part of the journey was to find a place to live where I could get help.
July 2017 found us on our way to Wisconsin to visit my 103 year old Mother who was in pretty good health at the time with a clear mind but a frail body. I received her cabin property and became her financial support. After the visit to her and a visit with dear friends in Minnesota, I went into a deep depression. Something I had never experienced before. Medication, counseling and a lot of love and support from family and friends got me back to an even keel. The disease was worsening and I was now using a scooter to get around, still walking with the walker some.
November 2017, my car had been sold, my home was under contract and with the help of family and friends we downsized in order to go into an assisted living facility. This was another time of huge losses, not physically, but things that I had gotten over the years, some wedding gifts, and other treasures, could not be kept and were given away or given to places like habitat for humanity. It was also during this period that I was started on the new ALS drug which was given IV. I did my own medications.
January 2018 we realized that where we had moved could not provide the care that I would need. Many medical horror stories made us start looking for some place that would work for us. God had sent us in this direction for a reason. We met and became good friends with Mike & Cecilia, who were also feeling they needed to be somewhere else and had found a place. I also got my power chair as getting up from the scooter became more difficult. We put a down payment on an apartment in this facility that was being built.
March 2018 - 1 year anniversary living while dying with ALS. IV meds stopped. More weakness in right arm, left leg, and neck muscles. My church put in a ramp so I could get into the choir loft to sing in the choir and to play my beloved handbells.
June 2018 - Weakness continues and I now have a neck brace to keep my head from going down. Seems my neck muscles just have a hard time holding up the 15# bowling ball on top of them. Our new home should be ready by the end of July.
This is the story until now. I have God by my side and my hand is in the hand of Jesus as I continue this journey. Someone told me to look for the flowers in each day that I have. I think I will look beyond that to all of nature that I have before me.
I slept like the dead last night until this morning. A solid 8 h0urs. I can't remember when I had that kind of sleep for a long time. I had a little nap this morning. A little nap this morning but not enough. Went to see the movie Selma who was part of the MLK marches and her most fast was the one on the capital. Very good bit of history.
I'M tired tonight again. Have not caught up so this will be short..
Love to you all - I have something to live for = a new toy!!!
The v=beast thing this day was waking up knowing the I will have a new communication tool very soon.