Living with Lou Gehrig’s Disease: Follow Up 

Joy Hollowell

Three months ago, we introduced you to the Kingsbury family.Jim Kingsbury is battling Lou Gehrig’s disease.He could still do many day-to-day functions in May of this year.The Kingsbury family invited Joy Hollowell back to their home recently, for an update on Jim’s progress.=============We first met Jim Kingsbury and his family in May of this year. The Bangor man had been battling ALS for about three years.The Kingsburys invited TV 5 into their home, to see first-hand the devastating effects of the disease. At that time, Jim still had some use of his arms, legs and other voluntary muscles.This is Jim today.”It’s getting harder. Talking is very labored now. I can’t lift my arms,” says Jim.Lou Gehrig’s disease attacks voluntary muscles. Just three months after our last visit, Jim has now lost much use of his neck muscles which makes talking, eating, sleeping and even breathing difficult at times.”During the day, he’s fine. But at night, in order to talk, he either has to put his neck brace on…or he has to stop and lift his head and say what he has to say, and then his head will drop forward. Which is scary because sometimes it drops so hard I’m afraid- is he going to break his neck?” says Lisa Kingsbury, Jim’s wife and caregiver.Jim says his biggest goal right now is remaining independent.”You get used to doing things all your life and then you can’t, and I don’t want to lose the ability to do what I can,” says Jim.Lisa says Jim’s progression is right in line with what she’s read about ALS. Still…”I don’t know if you can really prepare for it, you just try and keep up with it.”That includes a new motorized wheelchair and van, as well as this. It’s called a Dynavox and Jim controls the electronic device…”With my eyes.””He can turn the tv on and off, he can turn lights on and off…he blinks and the blink works like a mouse click. So he can turn the tv up and down, he can turn the channel, which can be annoying by the way (laughs),” says Lisa Kingsbury.The Kingsburys say their now three and a half year old son, Jack, has adapted quite well to daddy’s changes.”If we go for a walk, or take Jack to the park, he get in his chair and Jack jumps up on his lap and we go to the park,” says Lisa Kingsbury.When the Kingsburys talked to TV5 back in May, Jim said he was just taking one day at a time. Jim was asked if that was still the case.”It’s still a day. I mean I wake up, I got a whole day ahead. I like that,” says Jim. ===============Alpha One on Union Street in Bangor hosts an ALS support group the third Wednesday of each month.It goes from 4-6 PM.There’s also a support group in Augusta.For more information, you can call the ALS Association at 1-866-257-6663.