I may or may not have mentioned that Steve is in Nebraska right now. He and his family have gathered around his dad’s bedside to celebrate with him as he anticipates moving from this beautiful life to the next, even more beautiful life.
The decision to go was made quickly and Steve wasn’t able to fit his “breath stacking” equipment into his suitcase. I thought it would be fine because I knew he’d be spending most of his time in a hospital and someone would be able to help him find a replacement. But…nope. No one there seemed to know what he was talking about (breath stacking is a relatively new concept for ALS patients and it’s unfortunate that many doctors are not familiar with it) and he was at a loss as to how to find what he needed. We really believe that his commitment to breath stacking has had a positive impact on Steve’s breathing, so we felt strongly that going without it was not an option.
Steve doing some breath stackin’!
I sent a quick email to Betsy Paige, our advocate with the ALS Association here in Bend, asking if she could connect me to a chapter in Nebraska. Very quickly, I got a phone call from Shannon in the Omaha ALSA, asking how she could help. She was also unfamiliar with the concept of breath stacking so I explained it as best I could while she did an online search and found exactly what we needed. She then contacted a respiratory equipment company and had everything delivered to Steve in Lincoln by the end of the day. We received amazing, incredible care from this invaluable organization.
Since the beginning of our journey with ALS, I can’t begin to explain the volume of decisions we have had to make. They are weighty beyond words. The ALS Association has been with us every step of the way – not just as a shoulder to cry on or a listening ear (though they are that as well) – but as honest-to-goodness help. They’ve been down this road many times with many people and I can’t imagine how they stay hopeful every day but they do. At a time when your life feels like a burning building and you fear everyone might want to run away, the ALS Association runs in…and they bring water.
For all our friends who have donated, walked on a team, sported a wristband or volunteered at an event…thank you. This is why.
To Betsy and Shannon, Lance, Meagan, Aubrey and all our friends at the ALSA: thank you. We don’t say it enough, but we wouldn’t want to do this without you.
With hope,
Bo for Team Stern
P.S. I am speaking at this amazing event which benefits our chapter of the ALS Association on March 9. I’d love to see you there.
I can’t say enough good things about the ALS Assn. and how much I believe in them! They were there are every turn in the twisting road of ALS for my Dad and I am proud to be a Walk to Defeat ALS team captain. Even though my dad lost his battle a year and half ago, we still walk in his memory and in hopes of supporting all those who are still fighting! (and to find a cure for this monster of a disease). Blessings and prayers for you and your family.
God bless the people in all our lives who put actions behind their words!! Tony Cook from the greater Chicago ALSA Chapter drove in nasty snow to bring us a piece of needed equipment last week. I don’t think the breath stacker is known much in the medical community at all. Instead they recommend the Cough Assist Machine which costs lots to buy or rent. Thankfully Rainbow Hospice covers the cost for us at this time as it has gotten us through a crisis several times. Wish we had know about the breath stacker earlier, smart of Steve to utilize this on a regular basis! May God bless Steve and his family during this time.
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God bless them to help you with that! That is so awesome.
Oh boy do I understand and relate to this post. It isn’t very often that we travel with Ryan. And flying is almost out of the question. Ryan has to have about 5 pieces of medical equipment when staying anywhere overnight. And much like your experience, the docs/nurses in the hospitals know little about the equipment he needs. We bring our own, in fact, when he’s hospitalized. On another note, that’s awesome that he was able to get what he needed! And my prayers are with Steve and family as they go through this time.