Family Affair

Every chair and stool in the small room has a person in it and the nurse and social worker stand against one wall. Few patients bring so many family members, but this man has Huntington’s disease, a genetic neurological disease characterized by chorea or spontaneous uncontrollable movements, and such patients tend to have non- typical families. The patient sits in his wheelchair. His face is unshaven; he wears glasses and keeps his hands fixed in his lap between his knees.
The nurse taking his weight and blood pressure notes he has lost fourteen pounds since his last appointment in June. The patient’s sister mentions this to the physician when he enters the room. The doctor asks the patient whether he has had trouble swallowing, and he shakes his head. The ex- wife comments when she comes by with meals he has been sleeping in bed, and she thinks he has been sleeping too much, and not eating enough. The doctor gazes at the patient telling him he sleeps like a teenager, while he informs the family in the room patients with HD have increased metabolic needs. He wheels his seat in front of the wheelchair, asking the stubbly- faced man how much exercise he gets, commenting he could use an exercise routine and to consider riding a stationary bike or walking every day. The sister remarks,
Well that went over well…
The patient rolls his eyes, as the sister concedes she has tried to get him to walk around the apartment complex he lives in, to no avail.
The doctor recommends Boost, Ensure or smoothies; added calories will thwart further weight loss. The patient’s voice is unintelligible, yet the physician knows him and the remark he makes. Heavier patients with HD tend to have an easier course of illness. The physician asks about the time the patient retires to bed at night, and the patient responds when he feels tired, around one, and sometimes later. The physician nods in understanding, commenting under those conditions one might sleep later in the morning, but not until 4:00pm. He examines the list of the patient’s medications on the computer and suggests decreasing the nighttime risperidone dose by half.
On physical examination, the patient feels rigid. The doctor inquires about when he first received his diagnosis, noting he is in the rigid phase of illness, which occurs after in advanced stages of the disease when most chorea has subsided. The ex- wife and sister agree it has been ten to eleven years.
Wearing a black dress and blue glasses, the social worker comments she is beginning a support group for those with HD, and their families. They will meet in the Orlando area. She takes several email addresses so various arms of the family will be informed about future activities revolving about Huntington’s disease.


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