As I write this, it is February 14th — Valentine’s Day! And I really can’t think of a better way to show my love for my husband and best friend, Sam, than to make sure that he has everything he needs and, to a certain extent, wants.
Life with ALS continues to present an abundance of challenges, some that we hadn't even considered. And it can be difficult to acknowledge that this wretched disease continues to advance.
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 is a little recap of how your donations helped Sam last year.
Last summer was 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. Most importantly, we learned that Sam would benefit greatly from having a Baclofen pump placement.
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. That has completely healed, and I am able to transfer Sam with less difficulty again.
So, because of your generosity, Sam was able to have the operation he so desperately needed, for an Intrathecal Baclofen Pump. This outpatient procedure involved 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.
This has been one of the best decisions we have made! We continue to attempt to find the best dosage of Baclofen for the pump to release around the clock, but we have been happy with the significant improvement in pain management and increased flexibility. Sam recovered quickly and easily from the surgery with no complications.
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%. We also were gifted another grant to cover the remaining $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. Sam’s progression continues to remain slow and steady, so he will continue to take this drug. We are so grateful for all of the above!!
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.
So what is our big need this year? Care.
Being an around-the-clock-caregiver is both physically and emotionally exhausting. And while I wouldn’t want anyone else to do it, I am grateful when I get a break.
Private care is expensive! But we have some very generous family members who are sacrificing to give me two afternoons a week to take and uninterrupted nap, go for a walk, attend a yoga class, work on my writing, get a massage — anything I want to do!
Sam is also doing this for me because he loves me and wants to give me time to cultivate the best parts of myself.
Every donation only goes to the following:
— extra afternoons of private care
— copays for medical appointments
— copays for prescriptions
— copays for wheelchair repairs
— items that insurance does not cover, i.e. pillows, cushions, other bodily supports (ALS is a very uncomfortable disease. As the body loses muscle mass, bony prominences can cause discomfort. Medical pillows, etc. also give Sam more comfort.)
— anything that I give or put on Sam to keep him healthy and/or pain free and relaxed: vitamins, probiotics, lotions, creams, essential oils, and smoothies.
— repairs and checks for our accessible van
Thank you for taking the time to read this and for thinking of us this Valentine’s Day.
Please feel free to contact me with any questions, concerns, etc.: [email redacted]
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