-
. -
.
- Last in a three-part series.
Andrews After I was diagnosed with Huntington’s disease, I established a treatment relationship with Duke University hospital, a Huntington’s Disease Society of American Center of Excellence. Its neurologists specialize in movement disorders.
 |
The center offers regular Huntington’s clinics, which include meetings with speech therapists, occupational therapists, social workers and physical therapists. They all specialize in helping people with the disease. It was, and continues to be, a validating and supportive environment.
A dozen years later, my Duke file is thick, well worn. The twice-yearly visits, until recently, have served as informal preparation seminars. That’s because my first and only symptoms at first were psychiatric ones.
One symptom that I have exhibited is perseverating. When it happens, I fixate on an idea, and my mind just keeps going back to it – no matter what. This causes problems if I continue to dwell on a negative event or situation.
When the involuntary movement starts, it’s called “onset.” After onset, things decline more quickly; it’s different for everyone, even in the same family.
‘Using my power for good’
Dr. Mary Edmonson is a psychiatrist who is particularly adept at understanding not only how brain deterioration affects emotions and behavior, but how it impacts interpersonal relationships, especially with one’s caregiver – who, in my case, is my husband, Randy. She suggested ways Randy and I could work together, and we have woven her ideas into our Huntington’s journey so far.
For example, when I perseverate about something bad, Randy redirects me. We call it “using my power for good.” Randy also lets me use his brain as RAM when I need an external memory boost. If I am having a detailed conversation that I need to remember, I bring him into the conversation to do the remembering.
For many years, I perseverated about being stuck with this wretched disease. In doing so, I conjured up misery – and misery, I’ve since learned, begets misery. I clung to fear as if it were an antidote to Huntington’s. It made me feel I was on the verge of drowning, constantly.
A few years later, we learned that misery, along with fear, are two symptoms our family has control over.
Saddling myself with a layer of horror when each symptom manifested became tiring and boring. Fear could not cure me, so I realized it’s of no use to me.
My inner voice, which used to tell me I should be ashamed of inheriting this disease and all the flaws it creates, is a powerful force. When I convinced her to be my ally, all shame soon vaporized.
Then, since I no longer conflated my genetic flaw and my self-esteem, I begin to know acceptance.
The surplus of emotional energy is now directed toward things to come, but in a good way. When we look at what’s down the road, we acknowledge it, accept it and put things in to play that will help when it happens.
Acknowledge & prepare
I have chorea now. Involuntary movement of my arms, leg, feet and trunk. I can suppress it briefly if I really try.
The walker is a welcome option, as are ramps and handrails, but they don’t help when I don’t use them.
Since I am losing the ability to swallow, I have swallow studies regularly to see how well the mechanism that keeps food from entering the airways is operating. I use a straw and am transitioning to a soft diet.
When Randy discovered that our white refrigerator could serve as a three-sided dry erase board, it delighted me. Now we both write and draw all over the refrigerator with a dry erase marker. It’s another source of external RAM for me.
I have never been able to remember what clothes are in a dresser, even if it is labeled. We (he) took off the closet doors, and now I can see everything and keep track of it.
I create a rotation of activities to keep myself busy. They are simple things that I can accomplish, such as making playlists of different music for different moods. I send music and photos to my sons and friends. If things get too complicated or stressful, I simplify.
My phone has a loop on the case so I can walk around with it, and so my service dog, Rupee, can pick it up. Pull ropes on doors enable Rupee to go get help if I tell him to.
Any sort of medication that I might need at night, like Tylenol, is on a basket on my nightstand along with water in a spill-proof cup.
The big no know
Oddly, not realizing that you have Huntington’s symptoms is actually a symptom for many people with the disease. It’s called Anosognosia. While it was a blessing not to know earlier in life, being aware of my symptoms has helped me manage them.
In Huntington’s disease families, the life partner often becomes the caregiver. Few resources exist for caregivers of people with neurodegenerative diseases.
My husband, Randy, works at the Cherokee Scout full time, and has another full-time job with overtime taking care of me.
It’s much more than just making sure I don’t get physically hurt. I have emotional dysregulation, which is like expressing emotions through a pressure cooker. When I cry, seethe or otherwise let out this emotional steam, he listens. When I feel myself slipping away from the real world, he holds me. He gently suggests that I do things that might make me feel better – like exercise and outings – then does them with me.
When I blame myself or feel like I’ve screwed up, he always contradicts me. Randy helps me maintain control of my emotions before and after his work day. Sometimes I wake him up several times a night.
Randy considers work to be his respite. Listening to other people’s stories has always been his favorite part of journalism. Watching people in Murphy embrace him means more than I can express.
Navigating my onset and decline is akin to preparing for a new member of the family, one who will move in gradually and never leave.
We are as ready as we will ever be.
The writer is a resident of Andrews. Email her at ibsarahfoster@gmail.com.