October 1, 2016
Today, I sit in our beautifully remodeled home in St. Paul and start this Caring Bridge page to share with all of you my journey with ALS. I am eager to use this site as a way to keep in touch with all of you, my dear friends and family.
This past year we packed up and moved out of our home and into our friend’s beautiful condo in downtown Minneapolis, overlooking the Mississippi River. We lived there for six months while our home was being remodeled for my disability. In early May we moved back into our beautiful new home. I have such gratitude for the amazing and endless amount of support we received from friends and family to make this all happen.
While I could provide you with a detailed chronology and stories of how the disease has slowly progressed, let me just say the first symptoms I noticed started in the summer of 2011. Not uncommon to others with ALS, the challenging progression of the disease included frequent and unexplained falls, weakness in my limbs, fatigue and changes in my speech. After two years of numerous medical tests I was finally diagnosed with ALS in December 2013.
The diagnosis was actually a relief. I now had an answer to what was amiss with my body and had something definitive to work with. The constant sense that something was seriously wrong but having no idea what it was had taken a toll on me, my work, and my husband. As Bruce Kramer, author of We Know How This Ends: Living While Dying had said something like, “ALS spills all over one’s family and friends.”
Almost three years from my ALS diagnosis now, I feel incredibly blessed and fortunate to be supported and tenderly cared for by my amazing husband Dick, my loving family, a circle of very dear friends, and a group of talented and compassionate medical providers at HCMC. The ALS Association and its MN/ND/SD Chapter has provided me with a number of critical resources: a volunteer, weekly visits by a personal care attendant, monthly MDA/ALS support groups and support from their staff. All of my equipment is from the ALS loan pool: walkers, commodes, manual wheelchairs, a recliner, and communication devices. Medicare paid for a M300 Permobil power wheelchair that allows me to be more independent and mobile inside and outside of our home. Everyday I am able to walk and run our 3-year old standard poodle Bali through the streets of Mounds View. She runs along side me at 6 mph, both of us totally in the zone, breathing in nature and bonding with one another. It’s such a joy!
I will celebrate my 60th season this month. My intention is to continue being at peace and to cultivate contentment and equanimity. The serenity prayer guides me on this journey: “God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”
May you be happy and well.
*If you’d like to learn more about Amyotrophic Lateral Sclerosis (ALS)/“Lou Gehrig’s Disease” please visit the ALS Association’s website: http://webmn.alsa.org/site/PageServer?pagename=MN_1_about_als
*Bruce Kramer’s book (mentioned above), his wonderful blog and interviews about ALS with Cathy Wurzer/MN Public Radio are also insightful and inspiring: https://diseasediary.wordpress.com/author/emerkram/