Category: ALS Caregiving

Heroes and History Makers-Gala

On By tomstroopsIn Alpha Lima Sierra, ALS Caregiving1 Comment

Amazing. Beautiful. Energizing. Heartfelt. All words to express my thoughts on the Elizabeth Dole Foundation’s Gala. I have one more but will save that for later.

The Gala is not only the Foundation’s fundraising event but also a chance to spotlight caregivers the Foundation supports as well as those sponsors that help support the Foundation. It was beyond my expectations in many ways but more importantly I underestimated how this event would make me feel or how the Gala would fill me with gratitude.

Let’s get some of the initial thoughts out of the way…First, who doesn’t like putting a fancy dress on and going to a good party-This girl definitely does. Second, the ability to be in the same room with the Doles, Tom Hanks, Rita Wilson and of course Michelle Obama was so very exciting. Third, meeting the sponsors and donors that help the Foundation carry out its mission gave me along with the other Fellows our ability to show our appreciation.

Just how did this event fill me with gratitude? Well, I had been keeping a secret for several weeks leading up to the event that was shared that night by non other than Tom Hanks. The Foundation launched a new campaign called the Tom Hanks’ Caregiving Champion. When you join this campaign, you are given a Caring Tag. The Caring Tag is inscribed with the name of a military caregiver, along with their family’s story. The tag is a symbolic token of the support you will provide to the 5.5+ million military and veteran caregivers nationwide.

Drum roll….I was asked to be the first caregiver identified on the caring tag. The Big He is mentioned as well as my veteran/spouse. Tom Hanks introduced the new campaign along with our story. The words, service connected ALS, were mentioned in a room of close to 1000 people, many were hearing it for the first time. The awareness that occurred in a moment was more than I could have ever dreamed. From the onset of the Big He’s diagnosis, our family has been determined to bring awareness to the veteran/ALS connection. Awareness for a terminal disease is often hard because many people would rather have a tooth pulled without meds than hear about death and dying. This very topic is common place for people with ALS.

What is also important is that, Service connected ALS, was mentioned in a community of disabled veterans and their caregivers. There are pretty good odds that some in that room will be diagnosed with this disease in the future. Those veterans that have served since 911, have combat related injuries have the same high chance of being diagnosed with ALS. This is why it is so important to spread awareness. While there is no cure, one is coming. With awareness and advocacy we are helping to ensure consistent care by the VA.

While in DC I went to Capitol Hill to make my “asks” to elected officials. Today, I ask you to be a Caregiving Champion. You can donate here: https://hiddenheroes.org/caregiver-champions/donate/

As a token of appreciation you will get a caregiver tag with my family on it. I ask you hold it or put it someplace where you will see it. Think of my family and the thousands like us and know that you are part of the awareness and advocacy that the Big He and I want very much to spread.

Can you find yours truly? Who else can you find? Yes, I was that close to them.
My partner in ALS advocacy and awareness-Mary Hahn Ward. Her husband and Marine veteran has ALS. I look to Mary not only as a mentor and friend but a sister as well.

All my love,

The She

Storm is coming…

On By tomstroopsIn Alpha Lima Sierra, ALS Caregiving, Day-to-Day1 Comment

This phrase, Storm is coming, in my family is actually my Daddy’s way of getting rid of all the kids. Even when the sky is absent of any clouds, when we hear Storm is coming, we start packing up to head home.

Tonight, that phrase popped into my head but for a completely different reason. That reason, Alpha Lima Sierra. Tonight, we are in Houston because The Big He has ALS clinic tomorrow. For those not in the ALS know, Clinic is an all day event. You meet with a Neurologist, Pulmonologist, Respiratory Therapy, Physical Therapy, Occupational Therapy, Nutrition, the wheelchair vendor, and various others that do research into this disease. For many, going to clinic means hearing how much you have progressed. There is no rehabilitation for this disease. Most pray for a plateau in their progression but for many this doesn’t happen.

The storm I see heading our way is progression. Some progression is like a breeze, you feel it but there is not much to see. The storm of progression that is approaching us will change things, will leave a path of tears and fears in its wake. The Big He is getting weaker. His ability to breath on his own is becoming harder. He is losing his ability to do those things we take for granted like standing up, eating dinner, showering, and talking. Tonight, we had to quickly figure out the transfer from wheelchair to shower seat. Unfortunately I was not able to get a room with a roll in shower. We got an accessible room with a tub and bench. The difference is HUGE when it comes down to taking a shower. He was frustrated with me, I was scared that I might drop him when I helped him get up…in a split second I was running the “what if’s” in my head and what I would nedd to do if he fell. All is fine now. He is in bed, mask on and trying to get some sleep. The drive, dinner and shower exhausted him. That’s ALS. Tonight, I felt the fear and anxiety of this upcoming storm. This next change in the progression will be drastic. It will be a huge shift for the Big He, for the whole family. He will become more dependent on others.

I hate this disease. Nothing is holding back this storm. We must just watch. We are helpless when it comes to the progression. We know all we can do is try and stand as strong as possible to withstand this storm. We also know the calm will also come. We will adjust to the changes that come. We will get back to a routine…until the next storm.

A storm is coming. I can feel and see it. Our faith and love will keep us strong.

All my love,

The She