How Huntington Disease Is Affecting Touch, Satiety, and GI Sensations

I don’t hear much about loss of proprioception or sensation. And even less about how it affects GI issues with Huntington Disease. So here goes, though it may be TMI. You were warned.

Sensation: What I Feel (Or Don’t)

My hands and fingers will sense, when touching my leg or arm, that I’m touching someone else’s extremity. Once I see blood I know I’ve cut myself (again) trying a mani/pedi.  I have to floss in the mirror to be able to tell which teeth I’m between. 

I’ve lost sensation in all the nether parts, too. For the last decade or so it’s been hard to orgasm. I can’t tell if I’m peeing (and can’t feel wetness), which can lead to some really awkward situations. I poo perfectly normally except that there’s no advance warning – once I feel I have to go, I have minutes, at most. Worse yet, I can’t hold it. I’ve lost a lot of underwear to public bathroom wastebaskets.  

Satiety

Is my lack of satiety related to other sensory issues? I haven’t felt ‘full’ after eating in years. At least a decade. I can literally eat and drink until it’s hard to breathe or lie on my stomach. And still won’t feel full.

Hacking the Situation

Since I can’t trust my appetite, I rely on timing and visual cues for portioning. I kegel and qigong tap and do proprioceptive and balance exercises. Wait to leave the house until the morning poop. Keep wipes tucked in my bra, since a public stall is no place for my shit coordination to rifle through a bag. I postpone eating if I’m leaving the house for more than a couple of hours, eat out only if I can get home soon after, and fast all day for air travel.

I know this will get worse, it’s HD. But for now I’m mid stage and looking to function as close to normally as possible.

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