Today is my last day of silence. I am definitely looking forward to talking tomorrow. This week has been difficult. Not difficult with physically not talking, but just the strained social interaction with others. Even with all the love & support coming in from you all, I still felt disconnected and alone.
Since ALS limits patients physically, they often feel isolated enough. I will now begin praying that each patient who has lost their ability to speak has access to some form of speech generating device that allows them to communicate.
I also observed how others treated me when I could not talk. At times, some were impatient and didn’t want to figure out what I was saying. Others were sweet and attentive. A young lady at Dilllard’s last night was helping me find something. I had typed her a note in my phone and showed her what I needed. She was so kind, but I thought it was so funny how she whispered to me the whole time as she gingerly walked me around the store. I had to resist laughing out loud.
I know how uncomfortable it is to approach someone who is different, especially someone who can’t talk. Just because someone can’t talk to you, doesn’t mean they don’t require connection with people. We all need other people in our lives. Whether it’s ALS or something else they have, approach them. Even if it’s eye contact and a smile. I found that I used a smile and a thumbs up more than anything this week. Trying to provide confirmation that I could still hear and understand what was being said.
When I set out to do my “Shut Up & Cure ALS” week, I wanted to do it in memory of so many of my friends who have died from ALS. In addition, I wanted to honor others who are living with ALS today. To wrap up my 7 days of silence, allow me to introduce to you 7 additional faces of ALS. If you live in the Cincinnati area, they are your neighbors. I asked them why it’s important to them that you advocate with us. Here’s what they said.
“So many people with ALS lose the ability to write or speak, and advocates can provide this service for them by receiving updates and alerts and forwarding them on to their legislators, keeping our issues as a top priority.”
– Charlotte Dowd Age 58 (Diagnosed March 2015)
“I am now one of the faces of this devastating disease. Please take the small step to become an ALS advocate today. A cure is out there that could save my life and countless others.”
– Paul Rinderknecht Age 42 (Diagnosed March 2016)
“Nuerological diseases are not contagious not behaviorally driven… they just come.” Please become an ALS Advocate now!” –
– Bob Thieman Age 66 ( Diagnosed August 2013)
“When ALS is cured, entire families (and friends) are healed.”
– Jack Mott Age 62 (Diagnosed November 2015)
“Advocating for ALS is the first step towards finding a cure.”
– Diane Houston Age 72 (Diagnosed 2013)
“The more voices we have, the louder we will be.”
– Kari Robben Age 29 (Diagnosed January 2015)
“Advocate with us for the sake of the next generation.”
– Bob Budde Age 54 (Diagnosed February 2013)
We are packing to leave for Washington D.C. in the morning to participate in the National ALS Advocacy Day & Public Policy Conference. The National Advocacy Day is Tuesday, May 10th when hundreds of patients & caregivers will be meeting with members of Congress. Follow us on Twitter@ALSKids4Cure and retweet our posts at your members of Congress. Almost all of them are on Twitter.
Thank you again for all your love and support! Please save the date of Sunday, September 18th. We invite you to our 13th Walk to Defeat ALS. Join our Kids4Cure team today as a Walker or Virtual Walker! Donate.