Theater lover faces real life drama: Man afflicted with ALS sees community support

Johnny Arnold and his wife, Donna, made The Colony their home almost 25 years ago and quickly made a name for themselves in the Lakeside Community Theatre.

Johnny's carpentry skills have transformed the theater on several occasions; from sets to general construction, Johnny has given his handiwork whole-heartedly to the community theater.

But in August 2011, he was diagnosed with ALS, commonly referred to as Lou Gehrig's disease.

Amyotrophic lateral sclerosis is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, according to the ALS Association website. Motor neurons reach from the brain to the spinal cord then to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. Patients in the later stages of the disease may become totally paralyzed.

ALS was first described in 1869 by French neurologist Jean-Martin Charcot, but it wasn't until 1939 that Gehrig brought international attention to the disease when he abruptly retired from baseball after being diagnosed with ALS. The disease most commonly strikes people between the ages of 40 and 70, and as many as 30,000 Americans have the disease at any given time.

"It has been pretty scary for both of us," Donna said. "We are very outdoorsy people. We like to hike and camp and do a lot of things outdoors, and he misses that tremendously. Mentally, it took us a while to get to a point where we could let people come into our lives and share this. In the beginning, it was very difficult because we are very private people when it comes to our personal lives. Now, because we have opened our lives up in an area that we have never done before, it's made it a little easier with the support we have."

The smoldering Texas temperatures are detrimental to Johnny's health, and walking long distances or for long periods of time are no longer an option. This realization has been a struggle for the Arnolds.

"Physically, it is very, very difficult for him," Donna said. "He sees his body changing and he still feels like the same person he was before this. Whenever he goes outside he can't spend a lot of time out in the heat. When we are out and about, one of our friends who has multiple sclerosis has let us borrow a power chair and we take that with us if we know we will be walking around a lot because we know he just can't do it. He tires out too easily. Eventually he will be in a wheelchair and his breathing will be affected, which it somewhat is already."

He now relies on the use of a cane and is no longer able to make the commute to his previous place of employment. Though he still has use of his arms and legs, both have weakened considerably, Donna said.

In addition to impacting his ability to walk, ALS has also attacked Johnny's speech.

"Right now he has difficulty speaking and uses a Kindle Fire to type out things," she added. "He has difficulty walking, walks with a cane and wears two leg braces. He has a neck brace that he wears. He asked for another gentleman to come in and take over his responsibilities at the theater because he simply cannot do it anymore."

The Arnold's 20-year-old home is two stories with steep steps leading to the front of the home that Johnny has difficulty navigating. All the bedrooms are located on the second story, as are the full baths and doorways are not large enough for a wheelchair to navigate through. After much financial deliberation, the Arnolds decided to add a bedroom and bathroom to the first floor and expand the doorways to the kitchen and living areas to compensate for a wheelchair.

"Ralph [Crescini], a friend of the family, came in and gave us a quote and said it's going to cost $15,000," Donna said. "We were very surprised that was all it was going to cost. He's only charging us for materials. He has been building this room on his own time, coming in at 7 a.m. every day. We have the patio, we have the foundation and he brings in a guy or two to help him, but he has pretty much done this framing all on his own."

The Arnolds received additional help on the room by another friend of the family who is doing the electrical work and only charging for material, Donna said.

"We have had friends that are there for us no matter what. They have cooked dinner for us, have come and stayed with Johnny and taken him to the doctor," she said. "There are not enough words to express the thankfulness we feel for our support system."

During a fundraising walk, the Arnolds met a young married couple and their two children.

"We didn't even know this couple and they came out to support him then two weeks later her 2-year-old had a seizure at the park and passed away," Donna said. "She is an amazing woman. I know very little about her, but what I do know is that she's had to deal with the death of her child and still came out to support someone she doesn't even know. The son became an organ donor, and she is just an amazing woman. Those are the kinds of people who are coming out to help us and support us and make our lives easier even though they have things going in their life right now."

Johnny is still involved with the Lakeside Community Theatre including helping at concessions and at the box office.

"I have been overwhelmed with the support of family and friends," Johnny said. "I stay involved with Lakeside Community Theatre still, which makes me very happy. My LCT family is amazing."

The Arnolds are currently pooling their resources and hoping to raise enough money to pay for the construction on to their home. Longtime family friend Gisele Franks convinced the Arnolds to set up a donation website at giveforward.com/thejohnnyarnoldbenefitfund. Any leftover funds will be used to pay for medical expenses.

"Ralph has been heading our project of adding the room bathroom and patio," Johnny said. "He is an amazing contractor. Dave Edminston has done the electrical and Joe Melo has done all the plumbing. These guys are fantastic at what they do. As I said, my family and friends are making a world of difference in dealing with this disease. This would be much more difficult to handle without them and I am so lucky to have them in my life."

The Arnolds are also hoping to convert their van to make it wheelchair accessible, though the funding is not currently in place.

"People are very kind and we do very well, but financially it will be a struggle," Donna said. "Johnny was working full time and he will go on disability, which is very small, so financially it will be very difficult.

We will look at our budget again and figure out how to do this on a very limited income. Life is short and if this is all we have to worry about then we can do without some things and change our lifestyle. As far as what we need, the support of people being there and knowing that if we have to fall backwards, we have someone there to catch us."

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