I am Kimberly Kampmueller
a family member of someone we've lost to ALS
Every day became difficult, because he never knew what he would lose that day.
My father was diagnosed with ALS and sadly has since passed from the disease. Before ALS, my dad was a strong, motorcycle riding, golf loving, independent and funny man. He was 21 years sober from drugs and alcohol and lived his life helping others who lived with addiction.
He was supposed to have so much more life to live. He was supposed to watch his grandkids grow up and live a beautiful happy long life with his wife as they grow old. This was stolen from him because of ALS. His independence was stripped from him and he found it hard to find joy in some days. Because of his addiction, he refused to take pain medications. This was so brave of him, but it caused him so much pain every day. He tried the experimental drugs but he could never really decide if they worked.
As an ALS caregiver, it was very eye opening to see the lack of assistance that is available through this disease. Our local ALS organization was such a blessing. But we still wish there was more that could have been done to keep him healthy for longer, to fight, to improve his quality of life. Every day became difficult, because he never knew what he would lose that day. Would he lose his ability to grip something, would he have trouble talking, would his legs hurt, would he cough all day, would his neck hurt, would he be able to control his wheel chair or would his arms not work good enough? It was such a slow period of grief for him and for us. I hope that more efforts can be made to find a cure or at the very least improve someone quality of life while they are on this earth. No one deserves to die slowly, with their mind intact, as their body deteriorates. It’s like torture.
In the end my Dad decided to die with dignity, on his own terms. He was not going to allow this disease to win. I thank god that the dying with dignity act is in place. My father was able to say goodbye and be at peace knowing he could be free, before the disease put him in a hospital bed with tubes and wires.