This post is a celebration of the community of family and friends who have stepped up to support and love my wife, Phyl Gerber, who was diagnosed with ALS (Lou Gehrigs Disease) in the spring of 2017. We have posted Phyl’s speech which she (and I) delivered at the opening ceremony for the 2019 Western Massachusetts Walk-a-Thon fundraiser in Look Park on May 18. Several hundred people attended including about 75 who walked with Phyl.
The following is Phyl’s speech…
Hello family and friends! It does my heart and soul good to see so many people out here to support those of us dealing with ALS. At this time, I am dealing with one of the many symptoms of ALS, a weakened voice. Since I plan to chat a lot today, I want to save my
voice for that so I will turn the rest of my speech over to my husband John. The rest of this speech was delivered by John in Phyl’s words:
I am honored to have been chosen as this year’s patient speaker. Three years ago, I could never have imagined I would be here, sitting before you – as a person with ALS! I was healthy and athletic all my life. I jogged 4 times a week, went on long bike rides, played tennis, swam, gardened, did yoga and hundreds of house projects! I was rarely sick. With this lifestyle, I assumed I’d be spared any awful illness! Especially something like ALS! But I was wrong!
So why me?
There are lots of theories out there, but we still don’t really have an answer. It can strike anyone – at any time – no matter your age, ethnicity, or socioeconomic background! As of now there is nothing that can be done to prevent it – nothing to stop it in its tracks – and nothing to cure it!
That is why we are all here! We need to educate and make folks more aware of this devastating disease. Lou Gehrig of course put this disease into the public awareness. It was rarely spoken of before his famous speech! Now – every day, 15 people are newly diagnosed with ALS. That’s about 6000 people a year! As many as 30,000 people are currently living with ALS! It can strike anyone!
Last year my daughter-in-law’s Grandmother died of ALS. My neighbor around the corner has a cousin with ALS and they are here today. My son’s friend was newly diagnosed. When it is mentioned, everyone seems to know someone living with ALS. And the list goes on and on. It doesn’t feel rare to me.
So…. What can I do – what can we do – together? We can support the Western Mass ALS Association! Their Mission Statement states… “Our mission is to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.” Here’s the short list of all they do. They provide:
- no-cost services which include support groups,
- home visits,
- insurance counseling,
- referrals to community resources,
- durable equipment loans,
- the Care Connection program,
- education and support.
The National ALS Association has a shared mission: “to lead the fight to cure and treat ALS through global cutting- edge research and to empower those of us with ALS and our families to live fuller lives by providing us with compassionate care and support.”
Compassion is a key word. All the folks John and I have met thru the Association have been wonderful, loving caring people. And they know their stuff!
We are very lucky here in Massachusetts. Thanks to the ALS Association of Massachusetts for organizing our walk today.
So why do I walk?
I walk because we need to continue to raise awareness of this dreadful disease! No one should ever have to go through this debilitating disease that progressively takes away the ability to move every part of our bodies!
I walk because:
- I want to hug my grandchildren when they graduate from High School.
- I want to applaud wildly when they graduate from college.
- I want to dance at my niece’s weddings.
I walk today to raise awareness…. and money!
Thank you all for being here. LETS HELP FIND A CURE NOW!
For a related story on what its like being a caregiver for someone with ALS, see: https://changingthestory.net/2019/04/12/caregiver-suffering/