Pete's Story – Why your help reminds him and his family they are NOT alone!

It was twelve years ago. I was 34 years old. I’d tell you, and now I can be sure, that I was in the best shape of my life. I was working out each and every day and had recently retired from a long and rewarding career in the US Army. I served from 1985 – 1997. After I left the army, I was looking forward to life’s next chapter – a new career – so much to be ready for.  It was around this time that I began noticing weakness in my legs as I ran – I ran miles and miles every day.

In the year 2000, my world was rocked when I received the devastating diagnosis.

During this time, there was no local resource for people with ALS. There were no support groups. There was no multidisciplinary ALS clinic. There was no medical equipment loan closet. There was no community of support. I was told to get my affairs in order and just wait for the inevitable. I had no answers to my million questions.

I was forced to go it alone.

Things have changed for the better. I can honestly say this because I know it’s true. I have been part of our local chapter since its inception in 2002. I’ve seen our region without The ALS Association and I’ve seen our region with. I’ve seen the benefit.

In fact, I’ve helped create change in the ALS community.

As a veteran, I was part of the incredibly important study that helped researchers learn that veterans are twice as likely to be diagnosed with ALS. I traveled to Washington DC for the chapter’s first Public Policy Conference and by sharing my story, helped advocate for additional funding for ALS research.

I also remember my first Walk to Defeat ALS®. I’d easily be exaggerating f I said there were hundreds of people there. It was small, but finding any community at that time was incredibly powerful. Ten years later, stepping foot on Portland’s World Trade Center for the 2012 Walk to Defeat ALS®, I was amazed. I am actually more than amazed by the growth of this community. I am very proud that ALS is something that people are more aware of, because it happens more than people realize or would like to think about. Without this community, people with ALS would not have access to the resources that make our everyday challenges just a little bit easier.

This disease has absolutely changed my life. Everything is more difficult. From lifting a pen to opening a bag of chips, to even picking something small up from the table. Everything is more difficult. Everything takes longer. But now that I can share best practices with others living with this disease and I have access to VA benefits, a medical equipment loan closet, ALS experts and more, they can be made just a little easier.

Even though I’ve been living with ALS for fourteen years, I’ve experienced tremendous joy, too. That joy comes from marrying my wife, Raina, seven years ago. Six years ago, we had our daughter, Malia Rose. I have two adult children and have been happy to see them grow and become successful, and yet, I’m thankful that when Malia was a baby, I had enough arm strength to hold her and to help change her diapers. I couldn’t do those things now.

From the monthly support groups, to the medical equipment loan closet, to even just the informational and emotional support, The ALS Association has become the one-stop shop for people living with this disease.

If you were to ask me why has this community grown? Why do more people know about The ALS Association and ALS in general? Why have things changed for the better?

 Why don’t I feel alone anymore? Three words. The ALS Association.