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Hard to keep a good man down
With a positive attitude, support from his wife, Cathy, and a new medicine for mobility, Joe Derouche is walking again for the first time since April 2003. (Times photo by Bruce Farrin)
MEXICO -- A recent video of Joe Derouche has made its way over Facebook, bringing amazement and tears of joy to many who know him and what he's been through.
Joe, now 51, who has a rare form of primary progressive multiple sclerosis, has been restricted to a wheel chair since April 2003. But a video taken this past Sept. 24 at Rumford Hospital
(http://www.facebook.com/photo.php?v=533114320038281&set=vb.1000001915210...) shows him miraculously taking his first steps after nine and a half years. How was this possible?
MS affects the nervous system, so that the signal from the brain to the legs doesn't work correctly. Joe, who admitted had been a guinea pig of sorts for various types of treatment, tried a new medicine for mobility, called Ampyra. "In my case, it helped me to get my legs moving again."
"I had to go from not being able to feel my legs, which I still can't, to being able to move them, to get my brain to tell my legs to move. I had to learn completely how to walk again."
Asked how that experience was, Joe noted, "That was awesome. Got to give a lot of credit to Rumford Hospital for physical therapy. They really knew what they were doing and they pushed me."
Even then, it was a struggle. "For a long time, it was 'am I going to be able to do this?' and all of a sudden, it started with this leg that started to leg and then it went to this leg. And then I had to get to the point where they both caught up with each other," he said.
"You'd have a sit there and look at your foot and try to get it to move and it wouldn't move. What they would do is pick up my foot and bring out straight. They'd do that a few times and all of a sudden, my brain would kick in and it would start moving," said Joe.
"I never really got frustrated because my goal was to walk around with the walker in the house. That was my ultimate goal. I'm getting almost to that point. I can't stand up straight, but I can walk," he noted. On Nov. 22, this video
(https://www.facebook.com/photo.php?v=561029920580054) was taken of Joe at home.
"I was excited the first time I did it. The first time they put in like a hoyer in the hospital and got me to move my feet and move. When I did that, it was like, 'oh my God, I can do this!' Next thing you know, the following week, I did a little bit more and a little bit more. They said I'm way ahead of schedule with what I'm doing," said Joe.
On Dec. 15, relatives rented out the hall at Region 9 for a family Christmas party, where many witnessed Joe walking for the first time in some 8.5 or nine years.
"I had goose bumps walking in front of my family. They were all cheering me on. It was exciting. I had my sisters and brothers coming over to hug me. That film she (Pam Beauchesne, on Facebook) put out, I heard from people that they were crying. They were just in awe that this could happen. I never thought I'd be able to do that. I never thought there'd be anything to help me get going again," said Joe.
"I started the medicine nine months ago and it's taken that whole nine months to get to this point. I've had times where things went backwards on me...There is no cure for this disease. There's no medication for the whole disease. It's for the symptoms," he noted, adding, "They're coming out with so many kinds of medications for the symptoms of MS. It kind of gives people hope."
Joe's wife, Cathy, takes Joe to his therapy and documents everything with photos.
"I jokingly say that I'm behind Joe with a cattle prod. That's what keeps us going. We've got a sense of humor. We don't give up and it's exciting that he's walking."
"Since I got done with the pet shop, I've been here. Now I've started crafting, just to be in the room with him all the time. I think it's super that he's getting this far. A lot of people have been behind him since day one. Support is awesome. A lot of people pray, because he's been through a lot -- so many surgeries, and ups and downs, but we focus on the good times. That's what keeps us going," she noted.
It's been an up time for Joe for awhile now. "The last hospital stay was at my son's wedding. He got married in Berlin, New Hampshire. It got near the end, at the reception, and all of a sudden, she (Cathy) looked over at me and I was just sitting there with my eyes wide open. There was nobody home. My eyes were wide open and there was no response," said Joe.
"He overheated and there wasn't enough fluids," noted Cathy. "His body just shut right down."
Joe said, "They put me in ICU and I woke up the next day sometime."
"Heat is not a good thing with MS," noted Cathy.
Both noted that their kids have been very supportive.
Joe said, "I can't believe when she put that film out there, it spread like wildfire."
Cathy added, "Everybody was sharing and sharing."
"People were sending back feedback, 'way to go Joe,' noted Joe. "One lady said she watched it four times, and cried all four times."
He said that is the kind of impact "I hope to make with people who are dealing with MS, and also people with other diseases."
Joe goes for therapy twice a week at Rumford Hospital. His therapist is Alan Mitchell, who has been very supportive. Sessions last from 45 minutes to an hour. "That's long enough. I'm wiped out after that."
"Right now, we're trying to build up strength in my legs, so we do things that really push me. Like I said, you feel that burning so you know it's working. One time, I walked the whole floor in the old section of the hospital where physical therapy is. I walked that whole distance all the way around. I had to sit down a lot. I had the wheelchair behind me," he said.
Asked what he was thinking during that, Joe said, "Oh my God! Actually, I was concentrating so much, I wasn't thinking. They challenged me and wanted to see how far I could go."
He added, "They do need that kind of stuff for the insurance to pay."
And what was it like when Joe stood up for the first time?
He said he "felt this big relief of your body letting go. When your sitting in a chair, it's sore on you, on your butt. So when you get up like that, it was just this feeling of 'oh what a relief.' And then when I took the first step, it was like excitement. Of course, they're cheering me on. The therapists are. At the beginning, there was always two people in the room that were helping me. So they were very supportive."
"If it wasn't for my wife, I wouldn't be doing this. I tell you that right now," he noted. "To get through what I went through. Her being there was a life saver."
Joe said following his sessions when he does what he's supposed to walk, he is "wiped out."
He said the plan is to get him into a maintenance plan at home. "I have to keep the muscle tone up. If I stop doing exercises, I'll just go back to what I was."
Exercises include standing by the sink. He hangs onto the sink and go up and down to build his legs up. "And they burn, so you know you're out of shape. The burn is a good thing and it goes away when your done. Then I do some that deal with my upper back where you have a cord that you put around a door handle and pull back, row, is what you're doing," said Joe.
"I have like these fists in my back. The nerves are all entangled in them. I get injections all the time for them. They hurt. It's a nerve block," he noted.
Joe, who served as Mexico town manager from 1994-2005, was diagnosed with MS in April 2002. By the following April, he was in a wheel chair.
He spearheaded bringing in several businesses during his tenure, including the Walmart, which held their grand opening around 2000 on Joe's birthday, June 19.
At one point, Joe ran for senate and lost. "But I wanted to run for representative or senate again."
In August 2004, the River Valley Technology Center was named for Joe, who was more responsible than anyone else for the facility's development and opening.
Joe's face lit up when he was reminded about his saying during his days as executive director of the River Valley Growth Council.
"The train's coming in. Train leaving. The train has left," he said, to the laughter of Joe's wife and myself.
Where did that come from?
"It came from the tracks behind the tech center. We were saying the train is leaving. That's why I got it from," he noted.
"The train is leaving. You can either be on the train or off the train. But we're leaving."
Derouche said the tech center now has the whole first floor filled.
Joe made a lot of speeches in Augusta, not just to help the tech center, but for things like funding for the CareerCenter. "I liked doing that stuff."
"There were a lot of big changes for us when I left as town manager. Then we closed the store," he said, acknowledging that there was a lot that was not going their way. "But we're coming back. Excitement."
Cathy said they owned the Mexico Pet Store for 10 years, until 2008. Does she miss it? "I did for awhile but now I'm content where I am. Less stress. I don't have anything to worry about but what's here in the house. But I miss my customers."
Joe noted, "Since I was town manager, I went downhill for a long time. I really struggled, but never gave up being positive. It was touch and go there quite a few times. But I came out of it, stayed positive. I went through so much. A lot of people would be down about it, but in my case..."
He said, "It's been a long struggle back from 2008. What a nightmare. I have a special pump in my body that keeps my legs calm. There's a cathater that goes all way around into my spinal cord. That's why I've had so many surgeries. I've had 12 back surgeries, just in that area."
In 2008, that pump was not put in correctly. "I went into a coma. I went blind. I couldn't feel anything my neck down. I didn't know who they were," recalled Joe.
Cathy added, "For days. He kept repeating things over and over. It was all neurogolical stuff. It was crazy."
Joe said he was in a rehabilitation facility in Portland for a long time. "Just trying to get back. I did. People say I'm a fighter. I guess so."
"Stubborn," joked his wife.
Joe and Cathy are of the belief that there's a purpose with Joe having been through all this.
Joe noted, "It kind of goes back to that senate race that I ran. When I got done, a lot of people said 'there's something there telling you that you need to stay here.' In other words, stay as the manager and what you're doing with the tech center and Growth Council. Now that I think back on it, I think that was true."
"If I had left, everything I would have been working on would have dropped because there was no one there to run with it. You think of Mexico and think of all the construction we did and all the buildings that were put up. That was huge. You've got to go back a long ways before you find any kind of development like that, probably back to the plaza, I guess. Even then, it was just that building, not several of them."
He then noted, "We came close to so many others (businesses coming here)."
"I would always say I would never take 'no' for an answer. And that's the same thing with this. If somebody says to me, 'you can't do this,' no way, I can do this. You just have to find a way to do it. And it's taken a long time to get to this point," noted Joe.
Since this accomplishment of walking, Joe admits it's rejuvenated him in thinking, "well, maybe I can do this down the road..."
He continues as a longtime member of the Mexico Planning Board, and he still has a position on the Growth Council. Joe would like to get to the point where he could do some of the things he did in the past for economic development, but noted, "It all takes energy."
Cathy noted, "Everything happens for a reason. You just don't always know why."
"I guess I'm here to help people," noted Joe, "Whether it's through actions, my voice or showing them. The thing is -- don't give up. Don't sit down."
Cathy added, "And there's always somebody worse. Don't feel sorry for yourself when there's somebody worse off."
"I know people around here and through the network of MS that are in their houses and they have given up. It's a devastating disease. My arms, they twitch all the time. It drives ya nuts. The pain with MS is terrible. You have your good days and your bad days. More bad days than good days, but I know I'm going to get up the next day and move forward," noted Joe.
Joe said there's a lot of resources out there to help you. "They helped us tremendously. Having this house, just the upkeep of this place. There's things to help you with your heat, furnace, your insulation, your windows. We've gotten all of that, I don't know what we would have done without it."
Joe said he's slowly been getting on the computer, which includes visiting his Facebook page.
He agreed that maybe that might be something he could start a blog about. However, Joe noted that computers present a challenge for him because one of the symptoms of MS is double vision. "There are so many things that are wrong with me that come with MS. Every morning, I have a real hard time seeing things. Then all of sudden, it opens up and I can see again."
Following the interview, Joe asked, "You want to see me walk?"
He then got up and to his walker and went around the living room.
Cathy noted, "He can't do this when the grandchildren are here. They want to get right up in there and I'm afraid he'd fall."
"On your mark, get set...that's my man!" encouraged Cathy, adding, "You're doing a little better standing up straight."
"Yeah, I am," responded Joe. "This is the thing that freaks out the therapist. That I'm able to move around like this."
"I refuse to say no. Just in a different way," he said.
"This is the challenge of a lifetime here. It really is. By doing this, hopefully I can help somebody get out of that mode of staying in the house all the time, getting some positive energy and calling me up and talking about it. That would be nice," said Joe.