r/HirayamaDisease • u/Background_King_2860 • May 29 '25

Hd diagnosed in 20s, 36 now my journey

I swim a mile almost every other day (of course. Free style with out moving my neck, I will rotate whole body to breath)

I drive a motorcycle to work ( with a black neck collar and helmet )

I bike 4 to 8 miles couple of days a week,

There are days I used to hike 10 miles a day 5 days a week. ( trails like high lane pass in glacier national park etc) I drink, party etc

Sometime I do get lazy and not do anything and stay home as well for months.

  • When I got diagnosed, obviously I have no clue what this is and not soo many resources. But I made sure I used collar for the first few years, just to make sure there won’t be anymore damage. Once the disease stops progressing, I stopped using that collar at the same time, I trained myself to not to make any movements with my neck, so if someone calls me I rotate my whole shoulders to see them and not my neck.

Make sure you use collar in the beginning days, life is soo long, I know it’s hard to do it especially when you are going to school. But if you go thought this first few years, you have all your life to not use it.

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u/Tuffy-the-Coder May 30 '25

kinda sad tho the best we can expect is that the problem won't get any worse i wish there was a way to recover the damage also you said you ride bikes i wanted to ride too but my grib strength isn't enough to handle clutch altho i do drive cars but for handbrake i hv to use my right hand

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u/Background_King_2860 May 30 '25

From my understanding, gym helped me little to have a nice grip, dude it’s ok there are soo many thing in this world you get still experience and enjoy.