Huntington’s Disease – The Reality and Hope
The blue night sky peers across the bridge, rain dropping onto the windshield and trickling down into the swoosh of the wipers gliding back and forth. Another long day, running a business, watching my dad lose his faculties, worrying about everything my mom must be going through, trying to stay strong for my husband who has been so supportive, and choking down my emotions to get through each day. I blink ever so slowly and the car begins to fly over the bridge into the icy cold water recently thawed and deepening with the spring rains – and yet I feel no fear, instead I feel serene and peaceful.
In reality, all four wheels of the car are touching pavement. The car is not flying, instead, I find myself eerily daydreaming of a peaceful ending.
When I was in an extreme depression in previous years, thoughts like these were very conscious and showed an intense desire to self-harm. But this was different. I completely and unconsciously journeyed into a dreamland. A land where I found a morbid sense of peace. I know my mind and soul longed for a resolution, and that subconsciously the overwhelming circumstances I am in caused me to dream of something I would not now consciously choose.
And yet, here it was.
A longing for an answer, a break, just for a moment.
Lately, my dad is not able to eat. For quite a few months his choking, coughing and sputtering has increased. A swallow study has shown severe risk of the aspiration that can lead to pneumonia. But now, he does not even try to chew the food, instead it just spills out of his open mouth. He will drink his shakes and perseverates on water quite often. And now, my mom is left with the decision of whether to implement a feeding tube. I am thankful she has let me weigh in on the decision. We have also both talked to my dad about what he wants, too. What many people do not understand about Huntington’s Disease (HD) is that it is like having Alzheimer’s, ALS, and Parkinson’s simultaneously. This makes it difficult to know how much he is currently comprehending.
Thus, one week after the bridge vision, I find myself in the surgeon’s office with my parents. We are consulting with a surgeon about a feeding tube for Dad. Restless as he has been for a few weeks now, we cannot get him to sit down during the appointment. The surgeon is amazing and patient. His staff is much the same. They explain everything to us in detail and answer our questions. We set the appointment and walk towards our individual vehicles.
I sit in my car, text my husband, and begin to back out of my space in the parking garage. As I head toward the top level of the ramp, my car once again soars over the concrete wall. Sailing above the people walking into the hospital as I see a beautiful view of downtown Des Moines. Once again, I find myself somehow snapped back into reality and facing the emotions that lie beneath these visions. I find myself scared, overwhelmed, grieving, and confused. I can only guess that my mind keeps trying to come back to this daydream as a survival mechanism – a reprieve from the reality of HD.
Just a few weeks ago, when I began to reach a depth of sadness and bitterness I never thought I would feel, someone reached out to me from Huntington’s Disease Society of America to ask me to share my journey as a daughter of a dad who has HD, my family, what I want people to know about HD and how we are dealing with the emotions. Until now, I have not been able to assemble even two words on the subject.
Honestly, I have not been dealing with the emotions. I soldier on, sometimes I break down, but then I ignore it and move forward. In the last few months, however, I have been faced with the truth that I cannot use denial as a coping mechanism. And it is not healthy for me or for my mom. She needs to know she is not alone with the sadness.
I strongly believe in looking for the positive moments and the silver lining, but I also believe there are times when we will be hit directly in the face with the brevity of our lives. Fortunately, I was also struck with a new reality last Sunday. As we sang in church, I found myself moved so powerfully that I knew I had to tell my story. I knew there was no way for me to tell it without admitting to that moment on the bridge or without my faith. I know many people do not believe what I believe, and I do not want to close anyone’s mind to what I think is still valuable even if you do not believe exactly what I believe.
These are the words that bring me back to my reassurance when discouragement reaches its hand out from the deep seas, grabs hold of my body and tries to drown me in sorrow:
“Cause death could not hold you down.
You are the RISEN King.
Our God is RISEN
He is ALIVE
He won the VICTORY
He REIGNS on high”
For years, our family has pushed ever onward. My mom has tried to honor the way I deal with emotions and allow me to view my dad the way I want to forever hold him in my mind. We have continued to make sure Dad receives physical training two to three times a week. We developed methods for mental stimulation after he lost the ability to drive safely. We noticed a quick and obvious decline in his mental capacity – so we began piano lessons.
I have noticed a tremendous difference in my dad’s body equipping him to slow down some of the effects of the disease. We lift weights – a physical activity that has shown major benefits in all age groups including the elderly – so we were hopeful it would also help HD. Once a week my dad does lower body work ranging from weighted squats and leg extensions to step-ups and agility work. On his second lifting day with me, he bench presses with a barbell, lifts dumbbells, uses the weighted equipment, and does more agility work. He takes piano with me once a week. His lesson with me includes flash cards, pieces with hands alone, and even some with hands together.
We have maintained that we do not have to lay down and take what Huntington’s Disease wants to dictate to us. And now, though we feel haulted in our steps, that same approach remains. We will fight what we are able to as we also rest on the ultimate promise that one day my dad’s body will be restored. Come what may, we know and rest in the only promise that matters. And that is a promise from the only Healer we can fully put our trust in, the Emmanuel who delivers me and my family from the depths of all our darkest thoughts. And now I know how I deal with the emotions – seeking counseling with a therapist, meditation, prayer with friends, and music.
No matter what comes – no feeding tube, no wheelchair, no chorea – no battle is fully lost because I rest on this promise that He will restore us all to Him, with or without Huntington’s Disease:
“Death could not hold you
The veil tore before you
You silence the boast of sin and grave
The heavens roaring
The praise of Your glory
For you are raised to life again
You have no rival
You have no equal
Now and forever God you REIGN
Yours is the Kingdom
Yours is the Glory
Yours is the name above all names
What a POWERFUL name it is”
This is the name that rescues me from the depth of all waters and the darkness of all thoughts – there is light and air because of this promise.