In my family there's a joke that I'm the one who walks funny. I live with three of THE most amazing guys you'll ever meet. They all have Hereditary Spastic Paraplegia. It is a lower motor neuron disorder that affects their lower limbs, from the hips down. They have all been through loads of physical therapy and for a while we allowed Nathan to be our guinea pig whenever I read about something that could potentially make a difference. I cannot believe what all I put my sweet little boy through with the hope of finding the one thing that would be life changing. As if having painful cramps, spasms, falling, tripping, wearing holy shoes, wearing uncomfortable AFOs and being looked at all the time or told he couldn't do something wasn't enough for him to already be going through. As a mom and wife, I only want the best for my family.
I stumbled across a device about two and a half years ago that I thought might be the answer. I mentioned it to Nathan's PT and she tried a similar device that was painful and not very effective for him. Earlier this year his PT said that someone from that company was coming by and would be willing to try it out on Nathan and Jim and Brady. Ahhhhh, some things are worth waiting for.
We met with Cole Parsons, the Walk-Aide rep many months ago, thus beginning this long journey of what if. He first tested Jim out using the Walk-Aide. It's a device that is mainly used for traumatic brain injuries, such as stroke for foot drop. Well, you can say the boys have foot drop just by checking out their worn shoes! It stimulates (by shocking them) their foot to come up with every step. Yes, it's a bit painful and something that would gradually become the norm. How much more can that hurt than every stubbed toe or other scrapes? On that day we realized that Jim was what we feel like the perfect candidate for the device. The boys need to grow some more before it will work for them. The device is about the size of a deck of cards and worn just below the knee with a custom cuff. Most people only need one, my boys would need two. This device is relatively new in the medical world and especially for HSP patients and rarely covered by insurance. Here's a clip from the first time Jim tried out the WalkAide.
The night of the first "experiment" Jim said to me with tears in his eyes, "That is the first time I've ever walked." I knew in my heart that I would do just about anything to make this a reality for him. Can you imagine what parts of his life must be like and have been like for the past 38 years? He never complains about the pain or the arthritis that is kicking in because of the extreme wear and tear on his joints. It takes so much effort for them to walk, some days it's painful for me to watch how much effort it takes and yet they all just go and do without complaint. I contacted Cole to see what it would take to get the Walk-Aide for Jim. He gave me some crazy numbers to start with and said he would start the insurance process and for us to be prepared for it to go into appeals. We discussed renting the device to see the long term effects, but the rental cost was EXTREME, something close to $2000 that we would completely lose if it didn't work, but could put towards insurance IF insurance paid. It was just too risky for us. We were ready with letters waiting! We received a call that we were the first people private insurance has ever offered to pay their part without going through appeals. Certainly God was now on our side of this.
The cost of the device is over $10,000. Our insurance covers 80%, still leaving us with a substantial $2400 to pay out of pocket. On top of weekly PT and orthotics costs. Jim and I discussed it at length and decided it was something we could not justify on top of our other expenses and trying to get out of debt. He contacted Cole and thanked him for his time and said we would be in touch when the timing was better for our wallets. Cole was very nice and said he'd be waiting for us.
We received an email this week that after review, the company was willing to take over $900 off what we owe, reducing our total to about $1400. I was ecstatic! Jim still feels like we should focus our finances on getting out of debt and I agree. Staying home with the boys the first few years really took a hit on our finances and we're still digging out. But I still want to make this a reality for Jim. I still want him to have that feeling he had that first day when he walked.
So, here's where I would love your help. I have a very proud husband who is truly a gift from God to me and everyone he meets. I treasure him, he's an amazing father to our children and I couldn't ask for a better husband. If having this device gives his body a few more years to be with us comfortably and gives him a completely different way of life, then I'm up to the challenge of fighting his pride. We don't know long term how effective this device will be. Some HSPers have had success with it, others haven't. I know it's a lot of money for something that may not be effective for him in a few years, but for right now, it's the only thing we've got going. He claims I make very good chocolate chip cookies and other treats that I'm trying to avoid. So I had the idea that you (our friends) could help me out by buying some cookies or another requested treat. Baking is a great stress reliever for me, but the added weight then adds to the stress, I need to pass that part along to someone else. Below are some "stock" items that will be available for sale. If there's something else that you would like, please let me know and I'll get in the kitchen. I make very little low-fat or even attempt to make it look healthy, just taste good. My tastebuds and stomach could care less how things look!
*Chocolate Chip Cookies
*For our Northern friends, I make some great sweet tea I'd love to share with you! :)
I'm not putting prices on these items, I'm asking for your donation for these goods. Every penny will go towards lowering our out of pocket costs for the Walk-Aide for Jim. If we're blessed with excess we will use those funds towards the 3 month supply of new electrodes ($200 every 3 months) and more batteries! If you'd like to place an order, please send me a message on Facebook or at email@example.com.
Thank you for reading this. I know everyone has some burden(s) they are carrying and I so very much appreciate your prayers over this more than anything. During our prayer time tonight Nathan asked if we could pray for his toenails to stop growing so we wouldn't have to trim them ever again. Part of this is pure annoyance at the task and the other is it's a bit painful from the way his toes are beat up while he walks. Jim told him since God created Nathan the way he is, toenails and all, we wouldn't pray for change because God's design for us is perfect. Even for my boys with HSP. I would just like to make some revisions to their design if God allows.