Transcription of Roy Bouchard for the show ALS #137
Dr. Lisa: This is Dr. Lisa Belisle and you are listening to the Dr. Lisa Radio Hour and Podcast show number 137, ALS, airing for the first time on Sunday, April 27th 2014. Today’s guests include Kate Gawler, Roy Bouchard, and Ron Hoffman.
Amyotrophic lateral sclerosis is a disease of the nervous system that causes problems with muscle control and function, also called Lou Gehrig’s disease. It is considered a rare disease by national standards but is nonetheless thought impact 30,000 Americans at any given time. It is invariably fatal.
In the May issue of Maine Magazine, I wrote about artist Jon Imber and the challenges he has faced as a result of his ALS diagnosis. Today, we speak with Kate Gawler and Roy Bouchard, family members of Sue Gawler, the individual with ALS, and with Ron Hoffman of Compassionate Care ALS.
We hope our conversation gives you insight into what it means to be impacted by this disease and how we might use this lens when thinking about wellness in our own lives. Thank you for joining us.
I had the good fortune to spend time with Jill Hoy and Jon Imber in their home in Massachusetts and observe what Jon was going through in his relatively recent diagnosis of ALS. Today, I am with Kate Gawler and Roy Bouchard who have been dealing with ALS in the family since 2010. Kate Gawler is the sister and Roy Bouchard is the husband of Sue Gawler. Sue has been living with ALS herself since 2010.
Kate is a nurse working in women’s health at Maine Family Planning in Augusta. She and her husband Stew have three grown daughters. Roy is a lake biologist, now retired from the Department of Environmental Protection and is Sue’s main caregiver. He spent decades working all over Maine, monitoring and improving water quality. He and Sue have a son and a daughter in their early 20s. The two families have lived next door to one another for more than 30 years.
Thanks so much for coming in and talking to me today.
Kate: Thanks, Dr. Lisa.
Dr. Lisa: I know it was an effort for you to come in because taking care of Sue and working with Sue it’s a very collaborative process in your family.
Kate: It is. It largely and Roy is by far the main caregiver, but to come here today a lot of pieces had to be put together by Roy.
Roy: I think one of the things that you rapidly learn is that the value of friends and family is paramount. In speaking with ALS patients that don’t have that kind of support network in the community or in their family realize how fortunate you are because they are truly dire straits dealing with it sometimes. I have a lot of supports.
Dr. Lisa: It helps also to have a family that was close before the diagnosis took place, which sounds like you must have been if you live next door to each other for this amount of time.
Kate: Yes and brother lives next door to me so there are three families all in one place spread out over top of a hill. We’ve all made our homes there, raised our kids there. The kids all grew up together and so they’re closest cousins. Before Sue’s diagnosis, it might have been weeks between seeing each other but if anything happened and any of us needed anything, we would just pick up the phone and the rest of us would be right there, so we are really [tight bunch 00:05:40].
Roy: A testament to that is the fact that her three grown daughters come back all the time, brother John’s daughters come back all the time and our kids are usually in and out. We see the rest of the extended family and cousins and everything else on a regular basis, which is really important, too.
Dr. Lisa: Kate, your daughter Emily works here as the assistant publisher of Maine Magazine, Maine Home Design. When she heard that we were doing an ALS show, she said, “You really should talk to my family because my Aunt Sue has had this for several years.” It’s been an interesting experience from what I hear, because ALS is not a disease that we have a cure for yet.
Kate: No and I’m not sure I would use the term interesting in the sense of something that you would want to find out more about. I wish nobody had to learn anything about this disease. Not only do we not have a cure but they don’t even really know, understand what the mechanisms are for this disease.
Indeed, it may be a constellation of diseases. It may not be just one disease. It’s a neurodegenerative disease that’s progressive and they’ve found the genetic component, but that only affects about 5% of people with ALS. The research is active but they’re so far to go in the understanding. We really don’t understand what this disease mechanism is yet.
Roy: There’s a lot of effort in trying to find biological markers in blood serum or proteins or whatever, or common environmental cues that might trigger the expression of disease. As Kate said, if it truly is a constellation of diseases or causes that end up at more or less the same endpoint, then we’re really dealing with a multiply-driven situation where the disease or the research is much more difficult. There’s a lot of emphasis on epidemiology looking at the population, the distribution, common factors that relate to the onset of disease and only now that they’re starting to statistically tease out some possible things like geographic location that might contribute to some cases.
We’re really early in that kind of investigation and the understanding of physiology which is key to developing any kind of treatments let alone a cure is hardly in its infancy yet so it’s a long ways to go unlike many other degenerative diseases where there’s really some understanding of the basic mechanism. It’s pretty opaque right now.
Dr. Lisa: It’s thought of as a rare disease, but I don’t really think it is. I think at any one time there may be a fewer number of people with ALS than with other neurodegenerative diseases like Parkinson’s, but that’s largely because people with ALS don’t have a very long life expectancy. In talking with people, I know an awful lot of people who know somebody in their life who has been affected by this disease. The ramifications of family member with this disease are so enormous and I have never even been able to really imagine what Sue is actually going through. It’s profound.
Roy: The expression of this is you have not just the person with the disease that’s affected. Anyone who has a serious ongoing disease, there’s a ripple effect. It spreads first to the families and then it spreads to the community and then to the economics and ALS is particularly this way. Again, the short duration of the disease, the average life expectancy is three to five years and that’s an average.
The point is that the person’s influence in the community is reflected by their response to that person no longer being around to do what he or she did. You start to see the value of people in the community as persons, the interconnectedness and the ties and the friendships. The huge cost to society of a disease like this it can’t be ameliorated. People not only lose opportunities for themselves but the community is impoverished by this.
It’s a huge drain and you don’t really appreciate it until you have to live with it in the family, for example. Our community has come forth with a lot of love and kindness and response to her, missing her everyday presence, the volunteer work that she did and the like. I think the thing … I’m rambling on, but the thing that really we’ve all missed the most is her voice. We can’t hear her on a daily basis and she can’t express herself and sing like she used to. It’s a very quiet household now.
Dr. Lisa: Here on the Dr. Lisa Radio Hour and Podcast, we’ve long recognized the link between health and wealth. Here to speak more on the topic is Tom Shepard of Shepard Financial.
Tom: Sometimes I meet with married or partnered clients and when we get to talking about their financial lives, a cultural divide bubbles to the surface. One person feels one way about their money and the other seems to be on their own financial island where the set of beliefs and rules that have created unnecessary borders and boundaries. It’s not an uncommon thing. When I hit those situations, I do my best to help both people understand that neither it’s 100% right or wrong that they simply have to take a step back and look at their own financial life and a new light.
It is also true in politics and economics what we need to do is see money as a living thing that can be used to grow our lives together without disagreement or so-called border issues. It’s a great feeling for me. It’s like I’m helping people negotiate peace treaties with their money.
Be in touch if you want to know more Tom at Shepard Financial Maine. We’ll help you evolve with your money.
Male: Security is offered through LPL Financial. Member FINRA/SIPC. Investment advice is offered through Flagship Harbor Advisors, a registered investment advisor. Flagship Harbor Advisors and Shepard Financial are separate entities from LPL Financial.
The Dr. Lisa Radio Hour and Podcast is brought to you by Dream Kitchen Studio by Matthew Brothers. Whether your style is contemporary, traditional or eclectic, there are team of talented designers who are available to assist you in designing the kitchen or bath of your dreams. For more information, visit www.dreamkitchenstudio.com.
There was a time when the Apothecary was a place where you could get safe, reliable medicines carefully prepared by experienced professionals coupled with care and attention focused on you and your unique health concerns. Apothecary by Design is built around the forgotten notion that you don’t just need your prescriptions filled, you need attention, advice and individualized care. Visit their website, apothecarybydesign.com or drop by the store at 84 Marginal Way in Portland and experience pharmacy care the way it was meant to be.
Dr. Lisa: This person that you’re describing still is with you.
Kate: Absolutely.
Roy: 100% she’s still with us.
Dr. Lisa: She’s just with you on a different way.
Kate: She cannot move her muscles but she is totally there. That’s one of the most compelling things about this condition, is that although it eventually leads to paralysis the mind is not affected and is exactly as sharp and acute as ever. In Sue’s case that is means of the high order and sense of humor is intact and Roy was saying how she can take a ribbing but she could also give it back and so her mind is very entirely sharp and unchanged. The personality is unchanged.
Roy: The personality is unchanged. The outward manifestations are really not … and that teaches other things about value of outward manifestations and actions and things that what we normally take is the outer shell that’s really not what’s going on. The inner shell or the nuance and the glint in the eyes and things like that make a difference.
What she has done with this, as Kate has alluded to, is quite amazing. I have seen other people with other diseases that have given up and she decided that literally, “I’m not going to give up. I know I can’t be cured. I know this thing is going to kill me eventually.”
She’s a statistician among other things, not just the bell curve but this is few distributions as people on the low end of the life expectancy, high end of the life expectancy. She says, “I’m going to do whatever I need to, to keep a high quality of life and be on the outer into the bell curve. I’m going to beat the odds for a while but I know it’s going to get me.”
That’s the same attitude of persistence and planning, thinking ahead and always trying not to be a burden on other people and has kept her going. She’s extensive of adventure. Just the last two weekends, we went up to Sugarloaf and she slid in the Maine Adaptive Ski Program.
Dr. Lisa: What ski?
Roy: She went skiing. They put her in the sit-sled, especially designed. They put her in a leash. [Ever thought 00:16:04] see Susan on the leash and skid her down the mountain at Sugarloaf. There are amazing volunteers, wonderful people, but they just love to hover there because she got down the end freezing cold just spray all over her face and just frost and she was just grinning.
Kate: Grinning from ear to ear, yeah.
Dr. Lisa: When I was writing the story about Jill Hoy and Jon Imber and I spent time with Jon and with their family and he’s an artist from Maine and this is in an upcoming issue of Maine Magazine. I also spoke with the wife of Dr. Bruce Churchill …
Roy: Who?
Kate: Cindy?
Dr. Lisa: Cindy. He was one of my teachers. He passed away of ALS. It was a really different thing for me to do and I’ve been a writer a long time. I’ve been doctor quite a while. It was really difficult because it’s this place of groundlessness. There are no answers. As a doctor, there’s nothing I can do. It just brought up all these feelings for me.
I imagined that if you have this network of people in the community who are coming in to help with Sue, I imagined that you and Sue have had to deal with other people and their own stuff around ALS. How is that then for you?
Kate: I think that because of who Sue is it’s been a journey that everybody is willing to go on. It does have an element of not surrender but you do have to let go of … Roy and I both [cited this 00:18:01] to Sue, of course, so trying to understand it when there really isn’t. You can only understand a little tiny piece of it that can be frustrating and, of course, the initial impulse is the one actually do something when there isn’t really anything you can do, but people have just hung in there.
Roy: It’s interesting because people initially will have a difficult time dealing with someone in a situation like this. They’re very hesitant because it’s almost like you think of yourself in the community and seeing up persons visually impaired in the street. You don’t know how to help them across the street. You don’t know if they’re sensitive to being helped and the like and what’s the proper way to do it because you don’t deal with folks every day like that.
When someone has got a serious illness, folks have a hesitancy. They’re worried about making a mistake when they care for them. They’re worried about saying the wrong thing and bringing up images that will make them feel depressed or whatever. That’s the brilliance of many of the people I’ve seen with ALS when I’ve had the chance to run into them, say in conferences and like that.
They’re the people who haven’t given up. They’re the people who are still engaged and they exude this way of making you feel comfortable with them that they’ve accepted their lot to some extent and their businesses to have something resembling a good time when they can and sees opportunities.
It gives you a sense of perspective I your own life when your much more petty problems are seemingly knock on you door every day and say, “This is nothing. I can work through this in five minutes rather than taking five days [to maul or rip 00:19:48],” because they saw problems all the time, just trying to figure out how to keep your head from flopping over. It’s a big deal.
Kate: I used to love to complain, but boy all the joy has gone out of complaining for me. I really can’t do it anymore.
Dr. Lisa: I’m glad.
Roy: I’m glad you can’t do it.
Kate: I still do it but it doesn’t take me long to get a reality check and remind myself of what my perspective is.
Roy: It takes a lot of inner strength for people in a situation like that. It doesn’t matter if you got other disease like Parkinson’s or ALS or whatever. It takes a lot of inner strength to keep hold of a joy in life.
We were joking in Sugarloaf when the skier that was going to guide her down the mountain says, “Conditions are really icy today so I hope you avoid any trees.” I look at her and I said, “What are you going to say?” She says, “When we take the bark out of my teeth, I’ll be able to identify which tree it was that you hit.” There you have it.
Dr. Lisa: Every day she is looking for something to find to enjoy?
Roy: One of the things with ALS it’s important to recognize is that because there’s no cure, there’s no real treatment, a lot of energy goes into palliative work just trying to keep people together, keep them comfortable, keep their mental energy up and in the case of folks with a lot of support network, try to get the basics, just the basics there so you can have a wheelchair you needed. You have the caregivers you need and so a lot of energy goes into that.
Right now that’s where the ALS community is focused. They do focus with the national community working a lot on advocacy and research. The local community is really focused on quality of life issues for the family and friend for the people with ALS, their pals, or patients with ALS. They are not just subjects.
Dr. Lisa: I believe there’s an ALS Walk that takes place every year?
Roy: Right. In Portland, it’s September the 6th and in Bangor I think it’s the 23rd of August and both are really successful. I don’t know much about the one in Bangor. A friend of ours who was organizing her team up there just passed away from a different disease, but I know it’s very active. We have relatives that have actually walked in it, but the one down here is a big deal, overrun Marginal …
Kate: Back Bay.
Roy: … Back Bay, yeah.
Kate: Sue’s team was called the Subaru Group Kicks ALS. We were the top fundraising team for two years. We got eked out last year but Sue is the top individual fundraiser for three years in a row. She didn’t know. She has a natural competitive streak so it’s a good fit.
Roy: Yeah, tell me about it. What it does is it draws the larger community like the Chamberlains or the Churchills rather, excuse me. The Churchill family it’s huge. They got a huge following. They raise a lot of money, people show up, and they reaffirm each other’s friendship and kinship. It’s a big deal and so that’s extended network that’s managed to draw in a lot of funding for … a lot of it some goes to research, a lot of it to things like getting wheelchairs for people that don’t have medical support, things like that. Just getting counseling and having people around that can connect to what you need.
These walks are really big and they’re good occasion. We have like over 600 people, right?
Kate: Yeah. You feel like you’re actually doing something. You are doing something. You’re showing up, you’re walking so you’re actually physically doing something and it helps stave off that feeling of helplessness.
Roy: 90% of life is showing up.
Kate: That’s right.
Roy: It’s a good way to do it. It really is.
Dr. Lisa: How can people find out more about the ALS Walk and about Sue’s team/
Roy: If one just simply searches for ALS Walk Maine, they’ll get right to a link that takes them to the Maine Portland Walk and also the Maine New England Chapter for the ALS societies has got a really nice website. It’s got a lot of information, links to as deeply as you want to go into the current research and the thinking about how this works, so it’s a good place to start.
Kate: I think the national website is alsa.org and then our section is ALSA Northern New England. It’s a great organization. Sue and Roy had the opportunity to go to DC a few years ago sponsored by this organization and do some efficacy down there. We would love people to go and check out our team or start your own team or beat all the different teams and pick one you like. It’s a really good effort.
Dr. Lisa: I appreciate you both coming in and talking to us today and I appreciate Sue being with us. I think she is here. This is a tough disease and I give you a lot of credit for I guess doing what you just have to do you just have to do it. I hope the people who are listening who might have a family member who has ALS or someone in their lives that has ALS, I hope people will take the time to look more into these organizations you’re talking about, maybe get involve in the ALS Walk and just be present. Show up as you’ve described it and I think that’s a very valuable thing.
We’ve been speaking with Kate Gawler and with Roy Bouchard and indirectly through both of them with Sue Gawler. Thank you for coming in today.
Roy: You’re welcome. We appreciate it.