As her Huntington’s disease (HD) progressed, Sarah Foster found herself in need of some extra help. But, although she doesn’t feel ready for an in-house caregiver just yet, the idea of a service dog trained to help with Huntington’s disease filled her with hope.
But are there service dogs for HD? Not as such… but Sarah soon found Ears Eyes Nose and Paws (EENP), a company that took her needs seriously.
When I feel helpless about where Huntington's disease will take me, I try to do things that will help the future me. I am sharing playlists of my favorite music—songs I already use to sand and smooth rough emotions like frustration and loneliness.
My caregivers will have this tool when I can't use it myself. But I know my husband, Randy, will need more relief than just a playlist one day.
With that in mind, our house has a basement that a live-in caregiver could inhabit. So, I'm waiting for that, too.
I had to accept that I needed some extra help
HD degrades how I walk, swallow, speak, and think. When I struggle to talk, I sound drunk. Combine my halting, garbled speech with my deteriorating balance, and I seem very drunk. The first impression people have is based on a misinterpretation.
Even though the misunderstanding is quickly cleared up, it casts a pall on every new relationship. It is frustrating, and it adds insult to injury. I want to form a strategy to improve my first impression. It seems unfair to have HD working against me from the very beginning.
I accidentally inhale food sometimes. I don't chew it enough and can't swallow it down, or I do swallow it, but it feels stuck. I have actually begun to choke in a room full of people who didn't notice because they're plugged into phones. And everyone is connected to their phone these days, including me.
I am never prepared to go anywhere because I lose track of what I need every time. I fumble and lose my keys, my medicine, and my phone. Every single day, over and over. The frustration has brought me to tears more than once.
My mobility is getting hit from many different angles. Multitasking, transitioning, or looking around too much jeopardizes my balance. My brain doesn't interpret my location relative to my environment as well as it once did. I only sometimes notice when a path is uneven, but often only when it's too late.
Sometimes, my body thinks that the curb, the road, and the sidewalk are all on the same level. I also forget how many steps are left on a staircase, only to leap over the last one and hit the ground.
I misjudge direction and distance when I sit down. Because I often change my mind about where the seat is during the action of sitting, I fall into chairs. I am starting to need help to transfer to a seat or shower. I use a safety rail in the tub but soon could use some assistance maintaining balance when getting in or out.
I now hold onto whomever I walk with because I am afraid to walk without help.
Every day seems to have another unpleasant surprise due to HD
Accordingly, outings have become miserable, dangerous, and frustrating. I know a walker is in my future. I already purchased it. But I'm not ready for that yet.
Randy spends so much time caring for me that he struggles to relax at home or have any respite when we go somewhere. He worries that something will happen to me when he goes to work—a fall, an aspiration (when food or drink is inhaled into my airway), or an outburst. But I'm not ready for an institution, nor am I prepared for an in-home care provider yet.
Not a human one, at least.
I’m not ready for a human caregiver… but how about an HD service dog?
A well-trained service dog can help with emergencies that could befall me. A dog could alert people when I choke, if I fall, or am unresponsive. The dog could help me walk more steadily without human assistance and transfer me to a seat, toilet, or shower.
They could also help find and retrieve lost objects and even help me find my car in a parking lot.
People with Huntington's disease rely on daily habits and schedules, even simple ones. Routine is one of the few things that we can control. A service dog for HD may help build a healthy daily ritual with walks, errands, and social events.
At times, I can't self-soothe renegade emotions. But with a dog? Dogs are equipped with the ability to make people feel better. It's in their genes.
Researching dogs gave me something healthy to obsess over
If I don't choose something positive to mull over, my brain will default to spiraling over negative experiences. So, I wholeheartedly embraced the process of researching service dogs. I read about dogs trained for medical emergencies, dementia associated with Alzheimer's, and mobility. But to my knowledge, there's no such thing as a Huntington's disease service dog.
Yet, since my symptoms are a cross-section of all these categories, I supposed that a service dog for HD was a strong possibility. So, I began checking out organizations online and contacting them.
I chose Eyes Ears Nose and Paws (EENP) in Chapel Hill, North Carolina, and hoped it would choose me back. As its website explains, the organization trains dogs under various circumstances. The process even includes a period of being taught by prison inmates.
The application process included a need to verify my disability and provide detailed information on how an “HD dog” would help me. I also submitted supporting letters from all members of my medical team.
EENP replied to my application!
After EENP received my completed application, they invited me to an in-person interview. The organization made an extra effort in trying to understand my disability. The panel included a nurse who knew about Huntington's disease, and I was very thankful to EENP for arranging that. I answered questions about the layout of my house, steps, rugs, and other safety hazards. I also described the typical day. I demonstrated my walking abilities to the nurse.
This interview was the final criterion needed for EENP to decide whether to place me on the waiting list. I was so excited about finding out that I peppered EENP with a few too many emails!
Very soon, I was invited to be on the waiting list, provided I logged my daily activities for two weeks. The client team training, where you get matched with the dog that suits your needs, lasts for two weeks. It's strenuous, with a lot of walking. They wanted to ensure I had the stamina I needed to succeed. When I fulfilled this request, I was officially on the waiting list. And so the celebration began!
I have so many dark hours, and the idea of an “HD dog” to help me through them... well. My dreams started to look like real pictures.
A year later, I’m off to find my HD canine companion
I received an invitation to a “meet and greet” for the latest class of graduate dogs. I arrived early to be in the waiting room with all the dogs. A few of them were litter mates, and they frolicked like puppies, even though all of them were about two years old. I was invited to the next client-team training session, and the final countdown began!
The organization came to my home with one of the service dogs, Cooper. The visit was to check out the layout of my house and for EENP to gauge what kind of help I'd need and where.
I'm busy packing for the client-team training. I will be away from home for two weeks and return with a service dog. For the first two days, we rotate learning with all the pups. Then, on the third morning, I’ll get matched with my HD canine partners!
It could be Cooper! Or another dog that I have already met! Either way, I'm so excited right now.
Wish me luck!
The information presented is solely for educational purposes, not as specific advice for the evaluation, management, or treatment of any condition.
NPS-ALL-NP-00725 MAY 2023