My final story is living with ALS. I feel so fortunate to have support beyond anything I could have imagined. First of all my husband and primary caregiver is so good to me. I often say I don’t have ALS, WE have it, because it has has a major impact on his life too. Then there is the wonderful support of our kids who come up often. My son has a background in caregiving as a PCA and in an emergency room so has a lot of information and experience to share. My daughter is a social worker and had just started a new job before my diagnosis for which she was learning about ALS, so when it was mentioned as a possibility, she was able to inform me about the ALS support at Essentia in St. Paul and in Duluth. I immediately made an appointment in Duluth telling them that I would be happy to cancel the appointment if it turned out to not be ALS and we could all celebrate. By the time I got the actual diagnosis, I already had an appointment about a week away. The team is so helpful being made up of a neurologist, PT, OT, speech, nutrition, ALS Association rep, social worker, and pulmonologist. I see that group quarterly. There is also a support group that meets online once a month for people with ALS and we share ideas.
Next is the help from my sisters. They are all willing to pitch in and help so my husband doesn’t get burned out and I get taken care of. One sister, in particular, who is a nurse has come and stayed with us to help through many transitions which has been so great. I also get help from good friends. One friend, who was my neighbor at my old house, comes to visit and help me on some of her days off. New friends we met since moving permanently to Moose Lake come and do our laundry, bring treats and share conversation with me. I had briefly looked into assisted living and got a call one Sunday morning from a home in Minneapolis. When I told him I didn’t think I needed their service because I had so much support from family and friends, he said, “You just made my day". I have had old friends and nieces and nephews who make time to come and see us, too. I feel so blessed.
Up visiting Mom this weekend with my sister-in-law and most of our kids :) Mom and Dad are enjoying the company of the little ones but I'm sure they will also appreciate the quiet when we take off tomorrow. Mom says there isn't anything she needs to ask for help with right now. Dad concurs. They are looking forward to some visits with family and friends over the next few weeks.
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