Dancing with Huntington’s Disease

Being diagnosed with Huntington’s, the trials and adaptation this man had made in his life, translated…

One Morning, He Was, Taken Over by Misery, He’d Swallowed a Tranquilizer, and, Thankfully, After He’d Passed Out, He Woke Again, and, in the Suggestions and Advice of His Own Wife and the Instructor at the Foundation, He’d Gone to See a Neurologist………

Fate Had, Selected Him

Flipping open the medical records, the diagnosis of the new patient entered into the eyes: Huntington Disease, depression. In the geriatric neurology psych wards, there were, surely, only a handful of cases like this. And, it’d gotten me curious, why he was here, and, where did his depression came from?

from the papers…

At midlife, his hair already, turned all white, he’s gentle and mild-mannered, he looked, a bit nervous, with light uncontrolled tremors in his hands and head. He’d spoken in a flattened tone, and started recounting to me what had happened: several years back he’d started becoming less and less mobile, the work he used to be able to do swiftly, he’d started making mistakes in, and, his coworkers gained up on him, but, he’d not realized, that that, was the onset of his Huntington’s, until a year ago, he’d taken a leave of absence from work and gotten into the hospital for a checkup, then, the diagnosis was, confirmed.

Huntington Disease is a hereditary chromosomal anomaly. In the early stages, there would be the uncontrolled movements of the limbs, and the unrhythmic movements looked like dancing, which was how the name came about. In the latter stage, combined with emotional disorders, and, in the late stages, there would be a decline in cognitive abilities, causing the motor and neural functions to deteriorate completely, just like his own mother who’d been bedridden for years on end in the nursing homes.

in a “nutshell”, that, is what the illness looked like, from online…

He’d felt defeated, and couldn’t accept the fact that he was ill, lost ALL his confidence, and needed to perform the simplest tasks such as eating and brushing his own teeth, step, by step. He’d often felt difficulties breathing and swallowing, and became anxious, and even more depressed. Several months later, his wife who was burning on both ends in work and at home fell ill, he’d blamed himself, and the snowball of guilt and helplessness rolled and rolled, gotten bigger and bigger. One morning, he was drowned by his pains, and, swallowed a handful of tranquilizers, and gladly, after he’d become dazed, he woke back up, and, in the lecturer of the foundation, and his own wife’s suggestions, he’d gone to see a doctor.

I’d listened to him telling me what happened quietly, tried empathizing, and understanding his moods, and at the same time, trying to figure out, if his depression was caused by his neurological deterioration or was it psychological? Or maybe, both? The truth is, we can’t tell. And still, fate had, chosen him, to dance this dance called Huntington’s. I’d asked myself, if the diagnosis is confirmed, what else, can we do?

Thinking on the matter will only lead to dead-ends and I can only, take out the weapons of the psychiatry department—anti-depressants and anti-anxiety meds, and, in the protective environment of the hospital wards, help him through his crises.

During his stay, he’d complained constantly, that he was coughing hard, couldn’t get enough air, but, we’d only seen him, clearing his throat a lot; his temperature was a bit too high, but, we can’t find out why, in the end, we’d suspected, that he’d lost the temperature detection abilities, that it was caused by how heavy his clothes were o him; his anxieties, nervousness, seemed to have improved after the meds, but, we’d still known very little about him.

Finding His New Rhythm

One day, as a patient with dementia wandered around, it’d waken him who was asleep in bed. He’d become all of a sudden, anxious and flustered, as if, he couldn’t react to this sudden onset of events, and all the negative thoughts filled up his mind. He’d broken down and told how his entire body fell out of order, how he felt very suspicious, that what the other man did was directed toward him, that he was, being critical toward him, to the point of wanting to kill himself. He’d not cried, but there was, desperation that’s filled up in his tensions………

His wife’s worries spilled out in words, she’d doubted the environment of the hospital, what he’d encountered here, that it may worsen his condition. Seeing how lost she’d become at the moment, having taken care of him all the way up to this point, we’d helped to communicate with her with the team of social workers on the nursing staff. I can’t help but admit, that all of these questions remained, unanswered for now, and we can only, do our best, to persuade them, that hospitalization is the best choice for him, and give the alternative measures later.

We’d stepped up the suicide watch prevention measures, and, told the family to accompany by his side 24/7, with the anti-psychotic drugs administered. And magically, a few days later, he’d become, calmer, smiled a lot more too, and, thought more positively. He’d practiced walking in the ward, to keep his physical abilities up, and can hold conversations with the nursing staff, and gone to the activities as well; and, he’d interacted very well with his wife and the lecturer at the foundation when they visited too. It seemed, that his depression was, gone, and, it’d made me wonder, if it was him, putting on a stronger front outside? Or maybe, he was, actually, stronger, than we’d, given him credit for?

We’d set him up for psychological testing, and, the evaluations showed, that he’d scored low in areas of memory, emotional expressions, and ability to execute things. Even so, after the crises, his depression seemed to be gone, and, he’d found that new rhythm, and started marching forward again.

This dance called Huntington’s, is his fate, and, our team of neurologists met up with him, alongside his own wife, the lecturers of the Foundations, joined in his dance. We’d accompanied, encouraged, and at the same time, learned to understand him, to find that tempo to which he’s dancing to.

He’d successfully recovered and got out of the hospitals, and readied for the community outreach support groups, and walking toward the next phase. How his dance will go, how will the steps, the tempos change, maybe, it’s, written in the secret codes of his own body. About him, there are still, many unknowns we have, but I know, that he is still, dancing, with his Huntington’s Disease.

So, this, is how a man is still in the process, of living with his own illness, and, it was, hard for him to cope, because he used to be able-bodied and could do everything on his own, and now, he’d needed to rely on someone else’s help to live, and this sort of a drastic change would require a LOT of adjusting to, and, there is only so much the doctors, the psychiatrists can do for the patients, and it’s still UP to the patients themselves, to decide what will happen to them next, and it’s all in the attitude.