What a CRAZY year it has been, one that will never be forgotten. Who would ever have thought we would live through a pandemic and see much of our country shut down? It feels almost apocalyptic as young children beg their parents if they can take off their masks and fear and stress are running rampant amid so much confusion. Social distancing has been HARD for everyone, and isolation and loneliness have become common ground for many.
I want you to understand something. For many, many ALS patients, this isolation and loneliness is nothing new; it is their norm. Feeling trapped in their own home began long ago as just the acts of showering, dressing, and eating could take several hours, leaving them and their caregivers absolutely exhausted. Then there is the equipment that must come too: the respiratory support equipment, suctioning machine or cough assist machine to clear excess mucus, back-up batteries and hoses, feeding supplies (many patients have feeding tubes), extra clothes (for bathroom accidents), communication device, not to mention personal items such as purse or wallet, cell phone, etc. You can understand why many opt to just stay home. To make matters so much worse, by no choice of their own, visits from friends and invitations to meaningful gatherings become scarce as many friends and family members don’t know what to do with the new normal. They often feel sad, scared, or very awkward around their loved one as they lose the ability to communicate and take part in many activities. So, they avoid visiting altogether. Can you imagine how this feels? Can you try? Most years my walk letters are upbeat and filled with personal stories and family updates. This year I want you and I to focus on those people whose lives won’t return to normal once this COVID-19 crisis settles down, who have it so much worse than us. Those people who won’t be able to return to the parties and social gatherings or go to movies and restaurants and church again. Maybe you think it odd that, after living with ALS for 23 years, I would include myself in the “us”, but my life is a walk in the park compared to most ALS patients. I know that could change at any moment, but for now it is my job to advocate for my fellow pALS.
ALS is a costly disease in every way: physically, emotionally, and financially. The ALS Association is dedicated to provide patients and families with care services that include help with education and management of this disease, loan equipment, respite care funds, support groups, advocacy, as well as providing funds for valuable research.
The Walk to Defeat ALS is the primary fundraiser to help do this. The Walk is NOT canceled; it’s just going to look a little different this year. We will have a statewide walk on October 3rd, and every team will do their own thing, whatever works for them. Carianne’s Committed Cure-seeking Cavalcade will have our walk in Sevenoaks West neighborhood. Meet at our house at 10 am and we will walk the streets followed by a backyard picnic. We will wear our masks and practice social -distancing, but if you can’t be here, walk where you live and facetime with us or send us selfies. The important thing is we can’t let Rona keep us from moving forward in our fight against ALS! Please join me today in making a donation to help those living with ALS! We would love for you to join our team or make your own wherever you are to help raise awareness for this horrible disease and money for much needed care services and research. We desperately need a cure or at least a promising treatment to slow it down!