Sue Gamble is the caregiver for her brother, Ray Glasser. He has been in Lakeland Skilled Nursing and Rehabilitation Center in Angola, Indiana, since January 23, 2014. Sue says that working as a team with the nursing home staff has helped to ensure that Ray’s needs are met. Ray’s picture was chosen by the Huntington’s Disease Foundation for a billboard that appears in South Bend, Indiana, and on the back of buses in Fort Wayne. Ray is now fighting kidney cancer in addition to battling Huntington’s disease.
This week marked the 22nd anniversary of the start of Ray battling Huntington’s … I don’t know the exact date, but January 4th is when the MRI was done, and I know that we all knew something was not right when Ray was 35.
Our mother had taken Ray to a free clinic in Ft. Wayne, Indiana. The doctor was very knowledgeable about Huntington’s, and I can’t imagine hearing that she was 99.9 percent sure it was Huntington’s. Of course, our mother and Ray had no idea what “Huntington’s” meant as we had never heard it before. The doctor ordered an MRI; our mother took Ray for it, and they had to put pillows all around Ray because the chorea was awful!
Ray didn’t go back for the MRI results; he instead went to prison for a year for back child support. In priso📷n, Ray befriended a lot of inmates, and although the guards would yell because he couldn’t do things fast enough, the inmates would put Rays boots on and lace them up so he didn’t get yelled at. They would help him with his meals.
When Ray got out of prison, he came to live with Mike and me. I went to the hospital and got his MRI and took Ray back to the free clinic and was told yes, it is Huntington’s. We looked things up, and I was shocked by the things we saw and read. Ray would read whatever he could and would tell me what was going to happen. A month after I got the MRI, I filed for disability for Ray. We went to three doctors; Ray struggled so badly with each one, but within a month, he had his first check. A few months later, we went to Indianapolis to have blood work done by a neurologist. The neurologist’s words have stayed with me all these years . . . “No matter how many twists and turns you take on this roller coaster ride, always remember, even when it gets to the point he can’t talk, he’s in there. Don’t ever treat him any different than you always have.”
Ray’s CAG is 42, which means his Huntington’s gene [huntingin] repeats 42 times, and it should be like 17-20 [to be in the normal range]. The neurologist also told us that Ray would pass within 10-12 years. Ray has beaten every challenge that’s been put before him. Many times over the years, I thought, “This is it,” but he managed to bounce back. Now when things happen, I don’t get upset . . . I just say we have to wait and see how this goes.
📷Years ago, Ray’s attitude was, “Shit happens.” I say now that that attitude has carried him through to today. We face more challenges as we travel down this road, but I know that Ray has been able to touch sooo many lives. He had told me a long time ago to spread awareness as much as I can . . . through social media, the billboard, and now on the back of buses . . . I think he’s done a great job!!
I hope that someday in the near future, there is a cure for this worst disease known to man. I hope Ray is here to see it. Our family has grown stronger facing this battle with Ray, and I know he appreciates everyone that has walked beside him through this journey. Ray faces every challenge with such grace and dignity. He has taught all of us sooo much!
Thanks for beating the odds, brother, and I hope you never lose that beautiful smile!!! Ray is our Huntington’s Warrior!!!