Hey, fans, supporters, and lovers of Sam!
To put it simply, we need your help.
Life with ALS continues to present an abundance of challenges, some that we hadn’t even considered. And it’s difficult to ask for help, especially at an age when both Sam and I should be able to revel in our health and independence.
But every time we have expressed our needs, God has provided. You have given to, shared with, prayed for, worried about, and comforted us. So, here I go.
This summer has been filled with worry, starting with a fall at the beginning of June. During an especially difficult transfer, I was unable to pick up Sam, something I can usually do. So, I lowered him to the concrete on his knees and went to retrieve the Hoyer lift (a medical device that allows me to transfer Sam using a kind-of-hammock). He was in pain, obviously, but I thought he would feel better after resting a few hours. Sam has a spark about him that continues to give him the energy to push past any setback, any fear, any despair. He doesn’t stay down for long, as many of you have probably noticed.
But the next morning he woke up in screaming pain. I was in a panic. No medicine or stretch or gel was helping. At that point, we had never been to the ER, although I had heard horror stories from caregivers in ALS support groups. I just knew that wouldn’t be us.
But it was us, and it wasn’t all bad. We learned that Sam’s leg pain was due to his severe spasticity (think: the worst charlie horse you can imagine along with the inability to bend your legs). Now, in ALS, tone and spasticity can be your best friend. I think Sam’s spasticity has allowed us to maintain a semi-normal life. When someone with ALS loses muscle strength, they lose the ability to do anything, standing included. But I rely on Sam’s ability to stand due to his spasticity, despite his muscle weakness.
After spending a few days at Erlanger, we were transferred to Siskin, which ended up being a good and bad thing. At Erlanger, they didn’t know what to do with Sam. At one point, they were worried that he had pneumonia or that he had fluid in his lungs or that he had an infection or that he couldn’t take a deep enough breath. It’s interesting how many medical professionals have only the slightest clue about neurological diseases, like ALS.
So, we were moved to Siskin and stayed there for over two weeks. Every nurse, doctor, CNA, therapist, etc. has a passion for their job there. Despite this, it was a difficult transition for Sam. His privacy and dignity were not the first priority, and this was an adjustment for him. But we did learn that any stress, sickness, fall, etc. could set off Sam’s spasticity to point that he would be unable to get out of bed. That has always been my nightmare for Sam: being bedridden. He has too much life for that kind of living. Fortunately, we have been to the ER only once since then, also for a fall during a transfer. We learned that he fractured his left scapula. Donations will also go to any medical device he may need that insurance will not pay for.
So, all of this leads me to why we need your help. We have decided to pursue an operation for an Intrathecal Baclofen Pump. This is an outpatient procedure that involves placing a device (a pump) the size of a computer mouse near Sam’s hip with a catheter running to his spinal cord to release Baclofen, the most effective drug known to treat spasticity. Many people in wheelchairs suffer from this kind of pain and have this procedure done.
At this point, this operation is absolutely necessary. We had hoped to avoid this as an option because it is costly and invasive, but Sam’s liver is in jeopardy. He cannot safely take the amount of Baclofen he needs to not be in pain without destroying his liver.
This is an outpatient procedure, so insurance will pay for 80%, but that leaves us with 20%, roughly $7,000.
Also, Sam continues to take Radicava, an infusion drug known to slow the progression of ALS by 33%. Fortunately, insurance pays 80% for this very expensive drug and a grant pays for the remaining 20%. That leaves us with $350 every month for the cost of shipping the drug and any supplies we may need: gloves, alcohol pads, disposable IV kits, Sodium Chloride flushes & Heparin, dressing kits, etc. I have included the cost of that every month for a year.
Finally, especially after this summer, we have an average of $250 every month for medical bills (of all kinds: ER, ambulance, testing of all kinds, clinic, copays for every doctor you can imagine, and meds).
It seems like every year we have some big purchase that so many of you have donated to, making our life infinitely better: our bed, Sam’s wheelchair, the blessed accessible van, his eye gaze technology. This is one of those necessities. Please know that our gratitude extends beyond a thank you note from me. We cannot thank all of you enough for the past, present, and future help.
Please feel free to contact me with any questions, concerns, etc.: firstname.lastname@example.org