ALS #137

Kate Gawler:

The thing that is so amazing to me is the way that Sue's responded to this disease. It's really important to her to be connected with people and her attitude is just astonishing. Amazes me every day. And not just me, but there's a wide swath of people that she inspires over and over and over again.

Roy Bouchard:

Our community has come forth with a lot of love and kindness and response to her missing her everyday presence set, you know, the volunteer work that she did and the like. And I think the thing that really we all miss 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, but we

Ron Hoffman:

have to be willing to pay attention to ourselves. We have to be willing to step in that fire and feel whatever it is we need to feel, tend to tend to ourselves, tend to the shadow, tend to the darkness, tend to the uncertainties. I continually learn to ask for that assistance, to ask for that help.

Dr. Lisa Belisle:

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 27, 2014. Today's guests include Kate Galler, 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 to impact 30,000Americans. At any given time, it is invariably fatal. In the May issue of Maine Magazine, I wrote about artist John Imber and the challenges he has faced as a result of his ALS diagnosis. Today we speak with Kate Galler and Roy Bouchard, family members of Sue Goller, an 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

Dr. Lisa Belisle:

in our own lives.

Dr. Lisa Belisle:

Thank you for joining us. I had the good fortune to spend

Dr. Lisa Belisle:

time with Jill Hoy and John Imber in their home in Massachusetts and observe what John was going through in his

Dr. Lisa Belisle:

relatively recent diagnosis of als.

Dr. Lisa Belisle:

Today I am with Kate Gawler and Roy Bouchard, who have been dealing with

Dr. Lisa Belisle:

ALS in the family since 2010. Kate Galler is the sister and Roy

Dr. Lisa Belisle:

Bouchard is the husband of Sue Goller.

Dr. Lisa Belisle:

Sue has been living with ALS herself since 2010. Kate is a nurse working in women's health and main family planning in Augusta. She and her husband Stu, have three grown daughters. Roy is a lakes biologist now retired

Dr. Lisa Belisle:

from the Department of Environmental Protection and

Dr. Lisa Belisle:

is Sue's main caregiver. He spent decades working all over Maine

Dr. Lisa Belisle:

monitoring improving water quality.

Dr. Lisa Belisle:

He and sue have a son and a daughter in their early 20s. The two families have lived next door

Dr. Lisa Belisle:

to one another for more than 30 years. Thanks so much for coming in and talking to me today.

Kate Gawler:

Thanks, Dr. Lisa.

Dr. Lisa Belisle:

And I know it was an effort for you to come in because taking care of sue and working with sue is. It's a very collaborative process in your family.

Kate Gawler:

It is largely. Roy is by far the main caregiver. But to come here today, a lot of pieces had to be put together by Roy.

Roy Bouchard:

I think one of the things that you rapidly learn is that the value of friends and family is paramount. And in speaking with ALS patients that don't have that kind of support network in the community or in their family, you realize how fortunate you are because they are truly dire straits dealing with it sometimes, and I have a lot of support.

Dr. Lisa Belisle:

It helps also to have a family that was close before the diagnosis took place, which it sounds like you must have been if you lived next door to each other for this amount of time.

Kate Gawler:

Yes. And our brother lives next door to me. So there's three families all in one place, spread out over top of a hill. And we've all made our homes there, raised our kids there. The kids all grew up together, and so they're closest cousins. And it's, you know, before Sue's diagnosis, it might have been weeks between us seeing each other, but if anything happened, if any of us needed anything, we would just pick up the phone and the rest of us would be right there. So we are a really tight bunch.

Roy Bouchard:

And a testament to that is the fact that her three grown daughters come back all the time and brother John's daughters come back all the time, and our kids are usually in and out. So we see the rest of the extended family and cousins and everything else on a regular basis, which is really important too.

Dr. Lisa Belisle:

Kate, your daughter Emily works here as the assistant publisher of Maine magazine, Maine Home Design. And when she heard that we were doing an ALS show, she said, you know, you really should talk to my family, because my Aunt sue has had this for several years and it's been an interesting experience from what I hear, because ALS is not a disease that we have a cure for yet.

Kate Gawler:

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, but not only do we not have a cure, but they don't even really know understand what the mechanisms are for this disease. And 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 a genetic component, but that only affects about 5% of people with ALS. And the research is active, but there are so many. There's so far to go in the understanding. We really don't understand what this disease mechanism is yet.

Roy Bouchard:

There's a lot of. There's a lot of effort in trying to find biological markers in blood, serum or proteins or whatever, or environmental cues that might. Common environmental cues that might trigger the expression of disease. But 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

Ron Hoffman:

with

Roy Bouchard:

a multiply driven kind of situation where the research is much more difficult. And so 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 are they starting to statistically tease out some possible things, like geographic location that might contribute to some cases. So we're really early in that kind of investigation. And the understanding of the field's physiology, which is key to developing any kind of treatments, let alone a cure, is hardly in its infancy yet. So there's a long ways to go. Unlike many other degenerative diseases, where there is at least some understanding of the basic mechanism, it's pretty opaque right now,

Kate Gawler:

and it's thought of as a rare disease, but I don't really think it is. I think at any one time there aren't. 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 very long life expectancy. And, you know, in talking with people, I know an awful lot of people who know somebody in their life who's been affected by this disease. And it is. The ramifications of a family member with this disease are so enormous. And I can't even. I've never even been able to really imagine what Sue's actually going through. It's profound.

Roy Bouchard:

The expression of this is you have not just the person with the disease that's affected, and, you know, 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, you know, the average life expectancy is three to five years. That's an average. But 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. And you start to see the value of people in the community as persons, you know, the interconnectedness and the ties and the friendships and the huge cost to society of a disease like this that can't be ameliorated. People, you know, not only lose opportunities for themselves, but the community is impoverished by this. So it's a huge drain, and you don't really appreciate it until you have to live with it in the family, for example. So our community has come forth with a lot of love and kindness and response to her missing her everyday presence set, you know, the volunteer work that she did and the like. And I think the thing I'm rambling on, but the thing that really we all miss 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.

Ron Hoffman:

Now,

Dr. Lisa Belisle:

here on the Dr. Lisa Radio

Dr. Lisa Belisle:

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[Unidentified voice]:

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Dr. Lisa Belisle:

So this person that you're describing still is with you.

Roy Bouchard:

She's just with you 100%? She still is.

Dr. Lisa Belisle:

She's just with you in a different way.

Kate Gawler:

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. And in Sue's case that is means of the high order and sense of humor is intact. And Roy was saying how she could take a ribbing but she could also give it back. And so her mind is is very entirely sharp and unchanged. The personality is unchanged, the personality is unchanged.

Roy Bouchard:

I mean the outward manifestations are really not. That teaches us other things about value of outward manifestations and actions and things that what we normally take is the outer shell is really not what's going on, it's the inner shell and the nuance and the glint in the eyes and things like that that make a difference. What she has done with this is as Kate's alluded to is quite amazing. I have seen other people with other diseases that have sort of 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's going to kill me. Eventually. I'm going to be. She's a statistician. Among other things. There's this. Not just a bell curve, but there's a skewed distribution. It's people on the low end of the life expectancy. High end of the life expectancy says I'm going to do whatever I need to to keep a high quality of life and be on the outer end of that bell curve and be around for. I'm going to beat the odds for a while, but I know it's going to get me. And that's the same attitude of persistence and planning, thinking ahead, and always trying not to be a burden on other people that has kept her going. And she's a sense of adventure. I mean, just the last two weekends, we went up to Sugarloaf and she slid in the main adaptive ski program.

Kate Gawler:

She went skiing.

Roy Bouchard:

She went skiing. They put her in the sit sled, specially designed. They put her on a leash. Never thought I'd see Susan on a leash. And skied her down the mountain. A Sugarloaf. And they're amazing volunteers, wonderful people. But they just love to have her there because she got down to the end freezing cold. Just spray all over her feet and just frost. And she was just grinning.

Kate Gawler:

Grinning from ear to ear. Yeah.

Dr. Lisa Belisle:

When I was writing the story about Jill Hoy and John Imber and I spent time with John and with their family, and he's an artist from Maine. And this is in the upcoming issue of Maine Magazine. I also spoke with the wife of Dr. Bruce Churchill.

Kate Gawler:

Cindy.

Dr. Lisa Belisle:

Yeah, Cindy. And he was one of my teachers. He passed away of als. And it was a really difficult thing for me to do. It was maybe. And I've been a writer a long time. I've been a doctor quite a while. It was really difficult because it's this place of groundlessness. There's no answers as a doctor. There's nothing I can do. It just brought up all these feelings for me. And I imagine that if you have this network of people in the community who are coming in to help with Sue, I imagine that you and sue have had to deal with other people and their own stuff around als. How has that been for you?

Kate Gawler:

Well, I think that because of who sue is, it's been a journey that everybody's willing to go on. It does have an element of not surrender, but you do have to kind of let go of. Roy and I are both scientists, as is sue, of course. So trying to understand it when there really isn't, you can only understand a little tiny piece of it. That's. That can be frustrating. And of course, the initial impulse to want to actually do something when there isn't really anything you can do. But people have just hung in there.

Roy Bouchard:

And it's interesting because people initially will have a difficult time dealing with someone within a situation like this. They're very hesitant because it's almost like, think of yourself in the community and seeing a person who's visually impaired on 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. And so when someone's 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, you know, make them feel depressed or whatever. And that's the brilliance of many of the people I've seen with ALS when I've had a chance to run into them, say, in conferences and the like, that they exude this. They're the people haven't given up. They're the people who are still engaged, and they. They exude this way of making you feel comfortable with them, that they've accepted their lot to some extent, and their business is to have something resembling a good time when they can and seize opportunities. And it gives you a sense of perspective in your own life when your much more petty problems are seeming to knock on your door every day and you say, well, this is nothing. I can work through this in five minutes rather than taking five days to mull over it, because they solve problems all the time. Just trying to figure out how to keep your head from flopping over, you know, is a big deal.

Kate Gawler:

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. I'm glad 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 Bouchard:

But it takes a lot of inner strength for people in a situation like that. Doesn't matter if you've got a disease like Parkinson's or ALS or whatever. It takes a lot of inner strength to keep hold of a joy in life. If we were joking on Sugarloaf, when the skier that was going to guide her down the mountain says, well, you know, conditions are a little icy today, so I hope we avoid any trees. And I looked at her and I said what she would have said. She says, well, you know, when we take the bark out of my teeth, I'll be able to identify which tree it was that you hit, you know? So there you have it.

Kate Gawler:

She does. Every day. She's looking for something to find joy in, to enjoy.

Roy Bouchard:

But it's one of these 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 without a lot of support, network try to get the basics, just the basics there. So you can have a wheelchair, you need it. You have the caregivers you need. And so a lot of energy goes into that. And right now, that's where the ALS community is focused. They have a dual focus with a national community working a lot on advocacy and research. And the local community is really focused on quality of life, life issues for the family and for the people with als. They're pals. They're people with or patients with als. They're not just subjects.

Dr. Lisa Belisle:

I believe there's an ALS walk that

Dr. Lisa Belisle:

takes place every year, right?

Kate Gawler:

Yes.

Roy Bouchard:

And In Portland, it's September 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 was, by organizing her team up there, just passed away from a different disease. But I know it's very active. We have relatives that actually walk in it. But the one down here is a big deal over on Marginal. Not Marginal.

Kate Gawler:

Back Bay.

Roy Bouchard:

Back Bay.

Kate Gawler:

So Sue's team is called the Subu Crew Kicks als. And 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. And she, you know, she has a natural competitive streak. So this. That's a good fit.

Roy Bouchard:

Yeah, tell me about it. But, and what this does is it draws the larger community, like the Chamberlains, you know, like.

Kate Gawler:

Yes.

Roy Bouchard:

Or the Churchill's, rather. Excuse me, the Churchill family. Like, it's huge. They've got a huge following. They raise a lot of money, People show up and they Reaffirm each other's friendship and, you know, kinship. It's a big deal. And so that's this 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, you know, getting wheelchairs for people that don't have medical support, things like that, and just getting counseling and having people around that can connect you with what you need. So, yeah, these walks are really big, and they're a good occasion.

Kate Gawler:

And you can actually.

Roy Bouchard:

600 people, right?

Kate Gawler:

Yeah, yeah. And you feel like you're actually doing something. I mean, you are doing something. You're showing up, you're walking. So it's. You're actually physically doing something. And it. It help helps stave off that feeling of kind of, you know, helplessness.

Roy Bouchard:

Yeah, 90% of life. Right. Showing up.

Kate Gawler:

That's right.

Roy Bouchard:

It's a good way to do it. It really is.

Dr. Lisa Belisle:

How can people find out more about

Dr. Lisa Belisle:

the ALS Walk and about Sue's team?

Roy Bouchard:

Well, if one just simply searches for ALS Walk main, they'll get right to a link that takes them to either the main or the Portland Walk. And also the main 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 that's a good place to start.

Kate Gawler:

So I think the national website is alsa.org and then our section is ALSA Northern New England. And it is a really. It's a great organization. Sue and Roy had the opportunity to go to D.C. a few years ago, so sponsored by this organization and do some advocacy down there. And we would love people to go and check out our team or start their own team or read all the different teams and pick one you like. It's a really good effort.

Dr. Lisa Belisle:

I appreciate your 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. But 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 involved in the ALS walk and just be present, show up as you've described it, because I think that's a very valuable, very valuable thing. We've been speaking with Kate Goller and with Roy Bouchard and indirectly through both of them with Sue Goller. Thank you for coming in today.

Kate Gawler:

Thank you Dr. Lisa.

Roy Bouchard:

I appreciate it.

Kate Gawler:

Yeah,

Dr. Lisa Belisle:

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Dr. Lisa Belisle:

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Dr. Lisa Belisle:

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Dr. Lisa Belisle:

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Dr. Lisa Belisle:

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[Unidentified voice]:

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Dr. Lisa Belisle:

aLS is a disease that I think as a healthcare provider I struggle with and I know most of my fellow healthcare providers also struggle with because it's something that we have yet to cure and aren't even necessarily completely certain how to deal with it on a day to day basis. Today we have with us Ron Hoffman of Compassionate Care als.

Dr. Lisa Belisle:

Ron is an individual who does deal

Dr. Lisa Belisle:

with this on a day to day basis. Ron Hoffman founded Compassionate Care ALS and

Dr. Lisa Belisle:

has served as Executive Director for the past 10 years. He helps support people living with ALS by coordinating needs evaluations, instructing on ALS disease progression and end of life care. He facilitates and guides intimate discussions with ALS patients and their families who are nearing death or or actively dying. Ron is also the author of Sacred Transforming Trauma to Grace While Attending the Terminally Ill and is in the process of building an education and retreat center.

Dr. Lisa Belisle:

Ron, thanks so much for coming in.

Ron Hoffman:

Thank you for having me.

Dr. Lisa Belisle:

We're very fortunate to have you because I know that you go all over the country with the work that you do and you actually live in Massachusetts.

Ron Hoffman:

Yeah, I'VE been in Falmouth since 1997 on a full time basis.

Dr. Lisa Belisle:

And we came to know you. I know you've done work with families in Maine, but we came to know you through Jill Hoy and John Imber and an article that we have been writing about them and John Ember's struggle with ALS for Maine Magazine. So when I went to visit them in their Massachusetts winter home, they handed me a copy of Sacred Transforming Trauma to Grace while tending the terminally ill. And the person I was with, Kevin Thomas, who publishes Maine Magazine, he said, why is there a bullet? And what's the relationship between the bullet and what Ron Hoffman does? I've read your book, so I know the answer, but why don't you tell our listeners?

Ron Hoffman:

Wow. Well, one way of describing the bullet would be oftentimes, metaphorically speaking, in the world of ALS or any fatal or terminal illness, I think sometimes people looking for that silver bullet. And for me, one piece about Sacred Bullet is just that it is a sacred bullet. Now, obviously there's a part of my story, and I'm not going to share a whole lot of it with you, but as a child I had an unfortunate experience, experience with a shooting which pretty much permeated my life until I was willing to really take a look at it. It's just something I lived with my whole life. And part of the book obviously was about that. The book is a memoir. It's about my life. It's about the work that I do. And in the book, the book is in four sections. The first one is called Showing Up. And in my experience and the things I've learned in the last 10, 11 years, and I've been doing this work since 1997, when I was a caregiver for Gordon. But what I've learned is the importance of showing up. Then, of course, the book takes you from there to doing one's mending, or what we will call mending, which is about my own inner work, my own tending to myself, if you will. And then it goes into the next book, next chapter called tending. And then of course, overcoming. So showing up. Mending, tending, overcoming. And in my experience, in all the years I look at our healthcare system and I look at our physicians and I know some incredible physicians and there's some wonderful components of our healthcare system. But in my experience, the institutionalization of our healthcare gets in the way of our healthcare. And from my perspective, they can certainly put lots of money into it. But from where I sit and what I view is our system isn't going to change. Healthcare is not going to change unless we're willing to bring the right type of support for the people who are in health care, the people doing the work. I sat for three or four years on the Palliative Care and Hospice Federation board in Massachusetts, so I got to learn a lot. And I'm a huge proponent, huge fan of the world of hospice, the world of vna, and, you know, a question that I often ask individuals, and I love speaking with nursing students and medical students. I'm really passionate about that because that's where things will change. But the question I ask them, the question I ask neurologists, the question I put out there, is, are you willing to do the work necessary on yourself in order to better tend to the people that you're serving? Sometimes people look at me like I have horns. They're not quite getting it. And just put another way, are you willing to do your own inquiry? Are you willing to address your own healing work? I firmly have a hunch that we all have trauma that resides in our bodies. It doesn't have to be to the extent of the traumas that I experienced as a child and other parts of my life. You can get hit in the head with a hammer and have trauma in your body unless we're willing to pay attention to it, work with people in order to release it. So bringing that forth to health care, if you're not willing to do the work necessary on yourself, truly, how can you show up for people in catastrophic circles, circumstances? So that's what my work is about. Showing up, being present, listening, bearing witness to those circumstances. So are we not only willing to do the work on ourselves, but are we willing to go out there after we get our degrees, which I don't have, from school, and continue that work, continue that education? Because there's extraordinary people in the world, extraordinary programs, the world that are available. And one other piece is, you know, organizations, from my perspective, are only as innovative as its leadership allows them to be. And for me, it's, you know, I've gotten in trouble before because along the way there are people in healthcare didn't quite understand what I was doing. You know, who is this guy out there or who does he think he is? Or some of my families would go in and share with them. Well, you know, Ron Hoffman says this, well, who is this guy? And so again, there's extraordinary physicians and doctors in the world, and there's some wonderful components of health care, but unless we're really, really serious about bringing education and tending to the people who are doing the work. All right. Especially in the world of hospice. Because in the world of hospice, I mean, my book is also about a great deal about end of life. And, you know, I've just seen too many times, it's, you know, all hospices are not created equal. For me, it's about who's walking in the door and what are they bringing with them.

Dr. Lisa Belisle:

So tell me about compassionate care als. What does this organization do?

Ron Hoffman:

Yeah, what I don't do, and this is relevant to what I was just saying before, what I don't do is walk in and tell a family or individuals everything they don't want to know. And it happens far too frequently from health care. What I don't do is go in and tell people everything I think they should know. I've learned to leave my baggage at the door. So the things I don't do are the things. Things that we do do. And I think what that allows to happen is, wow, somebody who's walking in the door who is just authentic and is not here to give me advice and to tell me what to do. So what we do do is bring physical, emotional, and spiritual care to the table, which can look very different from one family to the next. What we have created over the years. And, you know, I will give credit to a chaplain named John Sheeran who worked for me some time ago, and he said, ron, what you've created here is a relational model, and it's beautiful. Oh, okay. Yes. That's exactly what's been created. Everyone is uniquely different. And until healthcare learns that, you know, there can be difficulties. You know, when I was taking care of GORDON Back in 97 and 98, what we learned together and what I learned is there was an incredible lack of support for individuals living with als. And I even at that time, didn't know what all that looked like or what it meant. I just knew something needed to be different. So as I honed my skills, because in the beginning, I really didn't know what I was doing. The seeds had been planted, and I knew there needed to be a different way or there was just some lacking. And so I learned as I went and, you know, I learned that there was equipment out there that it made sense for us to buy because insurance certainly wouldn't cover it. Insurance covers your basics, you know, and so if we can attribute or contribute some of what we bring and put it into equipment, you know, just high end, uniquely different things that bring quality and dignity into people's lives.

Dr. Lisa Belisle:

So some of these things are maybe things like lifts, lifts that enable people to.

Ron Hoffman:

Well, a lift is a lift is not a lift. It's not a traditional Hoya lift. I mean, you know, and that's what, what our system gives their manual. And oftentimes in the world of als, the person doing the tending to the caregiver, the carer is incredibly exhausted. So here you have this manual lift from our healthcare system. That one, it's very generic. It takes a lot of work and it takes a lot of effort. That said, some people make it happen and it works.

Dr. Lisa Belisle:

And this is something that lifts an

Dr. Lisa Belisle:

individual from the bed, from the bed

Ron Hoffman:

to the chair, from the chair to the bed bed. It allows someone, rather than to physically lift someone with a bear hug or under their arms, it's an assist. But rather than bringing a traditional lift, you know, over the years I found some really high end pieces, some high end lifts, if you will. We have what we call a medicine bag, which just has lots of really nice little items in there that make for really wonderful assists. And again, bringing dignity to people's lives. Oftentimes people don't know where this stuff comes from. They don't even know it exists oftentimes. One of the downsides to the upside is over the years, my friends in the world of hospice have seen all. I get all these calls, do you have this? Do you have this? Do you have this? So I have to take a deep breath and say, well, wow, okay, we'll do our best. But all of these are items that are out there. But rather than people having to pay for it, we've learned along the way we can assist them in that. Not always, but it can look different ways for different families. It's really dependent upon people's circumstances.

Dr. Lisa Belisle:

You've mentioned Gordon's name, and Gordon was, I believe, the first person that you cared for who had als. It was his wife Betsy that you approached when you said, I think we can do something bigger here.

Ron Hoffman:

Well, what happened was about a month before Gordon passed, I sat down with him and Betsy came in on the conversation with the idea of why don't we do a fund in your name? Because just along the way we saw how difficult it was for other families. And they said, yeah. And I said, well, wait. I said, do you want to support research or do we want to help families? So they kind of talked about it. And again, Gordon couldn't speak, so we talked without his words. So finally I said, yeah, let's help families. Which I was grateful for because had they said research, I wouldn't be here.

Dr. Lisa Belisle:

The goal of the Dr. Lisa Radio

Dr. Lisa Belisle:

Hour is to help make connections between the health of the individual and the health of the community. The goal of Ted Carter Inspired Landscapes is to deepen our appreciation for the natural world. Here to speak with us today is Ted Carter.

[Unidentified voice]:

From time to time, I get calls from people I know or former clients, and they kind of let me in on what's going on around them. And one lady called recently about a letter written in 1956 to Kenneth Roberts, and it talked about a woman who wanted some dowsing done. Kenneth Roberts did a lot of work with Henry Gross, and she knew that I did dowsing, and she remembers when I went out to dowse her property. This woman that called me, she said the end of the dowsing rod flew off at the time I was doing the dowsing work. And a lot of times I do work on land and detect subtle energies. And a lot of times things show up on the land in vortices and things of that nature that really speak to the properties of that land through the subtle energies. It's amazing how intuitive we are in nature and how nature speaks to us in very subtle ways. Ashes on properties are easily detected. Pets and people ashes I've time and time again detected where people are buried, for instance. And people are always amazed at saying, oh, well, that's a place where my husband was buried. And I'd say, oh, well, we should honor this place. And she said, oh, I did. I planted this tree here. But I said, well, we can have another little ceremony or something. So it's always important to realize that there's much more that's going on beyond the scene and behind the scenes that we can't see on your landscape and your land. I'm Ted Carter, and if you'd like to contact me, I can be reached@tedcarterdesign.com

Dr. Lisa Belisle:

the Dr. Lisa Radio Hour and podcast understands the importance of the health of

Dr. Lisa Belisle:

the body, mind and spirit.

Dr. Lisa Belisle:

Here to talk about the health of

Dr. Lisa Belisle:

the body is Jim Greatorex of Premier Sports Health, the division of Black.

[Unidentified voice]:

Many medical conditions are a family affair, and we understand it. These conditions can seem embarrassing to not only you, but to your family as well. Now, rest assured that our family at Black Bear Medical is only concerned about you and how we can help. You are a person, a human being, and deserve to be treated with dignity and respect regardless of your situation. So whether you are looking for incontinence supplies or ostomy supplies, or just feel embarrassed because you need an aide to live your daily life. Rest assured, our team at Black Bear Medical understands your concerns and will make you feel like family. Visit our locations in Portland and Bangor or blackbearmedical.com to see why. We respectfully keep you active and in the game of life with medical equipment, sports, health and rehab products, wellness products and more experience.

Dr. Lisa Belisle:

you've also been doing your own work

Dr. Lisa Belisle:

and I know that you've worked with Roshi Joan Halifax and you've worked with actually quite a large community across the country of people who are really interested in their personal the personal narrative and how their own need for healing impacts how they deal with the world.

Dr. Lisa Belisle:

I'd like to read this.

Dr. Lisa Belisle:

That is from your book from the mythologist and storyteller Michael Mead. When you step further into the story you came to live, not only does the mythic territory open, but the deep

Dr. Lisa Belisle:

self moves and the world of imagination

Dr. Lisa Belisle:

and meaning comes toward you.

Dr. Lisa Belisle:

When we are oriented to the to the core imagination seated in our souls,

Dr. Lisa Belisle:

we can find meaning again.

Dr. Lisa Belisle:

Even our worst experiences can become revelatory

Dr. Lisa Belisle:

and healing rather than traumatizing and alienating. This really is, it's very central to what you do is helping people move towards that core of themselves.

Ron Hoffman:

Right? I couldn't do that if I hadn't done my own work. And what I've learned about myself and I still have a lot of work to do. I don't think we're ever healed. There's always more to be done, more to be paid attention to, more tending of ourselves. To be done is to if I have an awareness of what's going on in my own body, if I can really truly pay attention to what I'm feeling at any moment, not just when I'm not with my families, but when I'm with my families, then I'm able to know when something is amiss, if I'm paying attention and I have that in that moment of knowing I just said something I shouldn't have said, my body's going to tell me that. Opposed to as I was early speaking with someone, someone about and I think of John and Jill, in my experience, that's the ultimate of relationship for me, that's the ultimate example of a relational model. The first time I met John, we just dropped into this extraordinary place where all the masks and all the layers for the most part were enough, where things were just peeled away. And it was an incredible authentic sharing of words and sharing of silence and just an eye to eye contact where we just dropped into this extraordinary place. And since that time, an incredibly beautiful relationship has unfolded with John, Jill, their son Gabe, and myself. And so I think on some level that's what Michael Mead is speaking to. But we have to be willing to pay attention to ourselves. We have to be willing to kind of like step in that fire and feel whatever it is we need to feel, tend to, tend to ourselves, tend to the shadow, tend to the darkness, tend to the uncertainties. And it doesn't mean I've mastered that, far from it. I continually learn to ask for that assistance, to ask for that help, if I can remember to do that more often, whether it's asking God for help or my ancestors for help. But I know when I can do that, I'm not walking alone. And oftentimes I'll think of my other families. When I'm walking in to see another family, you know, it's like walking side by side with people, you know, in order to, in order to truly show up and to continue to do. In fact, I was speaking with someone earlier in your office and I was reminded I often get the question, how do you keep doing what you're doing? And not long ago it was like, well, I asked for that assistance, be it from God, be it my ancestors. The ancestral piece is really big for me, but also the, the connection I have, the relationships I sometimes have with some of my families, like John, like Jill. It's kind of like a mutual sharing. And in that sharing there's a feeding, there's a nurturing going on, it's giving and it's receiving in a very beautiful, appropriate place. And you know, just out in your office, I realized, yeah, that's how I keep doing what I'm doing. Because it can get incredibly hard, you know. You know, families are very, very different. And some have a little need and some have many needs. And it's not so much whether it's little or small, it's about the unfolding in that relationship, you know, and that unveiling of what's coming forth from them.

Dr. Lisa Belisle:

It is one of the more difficult

Dr. Lisa Belisle:

things to do, remaining present, being fully present with another human being. And whether you're doing it as a doctor, as I am, or whether you're doing it as a care provider, as you have been. Why is it so difficult. Why is it so difficult to get into that space with someone who, even if they're not going through something significant

Ron Hoffman:

like als, I think, you know, in the world of our healthcare. I was visiting a friend of mine, an elder. Her name is Janet, who's 83, I think. She was in the hospital. This was yesterday. And she's a dear friend. Her son's been living with ALS for a long, long time, and quite frankly, in a pretty good place. And I found out she was in the hospital, so I went to go see her. And it was one of the large hospitals in Boston. And I got there, and it was just huge. I hadn't been in this hospital corridor after corridor. I got up to her room, and her daughter was speaking to one of the doctors, I think. And I was just watching people come and go, come and go, come and go. And I was thinking of the doctor, I was thinking of the nurse who is paying attention to them. They're so, I would say, overworked. And I saw this doctor really listening to the daughter. I was really touched, and it was a beautiful thing to see. But again, it gets back to the institutionalization of our healthcare system. There's just not enough heart. There's not enough time. You know, you have all of your forms to fill out. In my world, I don't do paper. I really try not to. We have maybe one form, and that's if somebody's borrowing a vehicle, because I remember what that was like for Gordon, you know, in clinic one day. And this is in 97, 98. How many times are y' all gonna ask this man the same questions? One doctor after the next, after the next? So I knew there could be a different way, and I understand it needs to be done. But it gets back to, are we willing to tend to ourselves? Are we willing to do the work necessary on ourselves? And will the system allow the institutions to do that, to support the individuals? You know, my hunch is you're a doctor that really shows up for her people. I don't like the word patience, okay? And that's what I know about you. And I see that with others, and oftentimes those that don't, and it's not that they don't wish to or don't want to, I'm not sure they know how to. Right. I know Roshi Jones, Joan Halifax, who I met Long ago, does some incredible programs at Upaiah. One in particular being with dying. You can't get in it now because it's filled with doctors and nurse practitioners. She's had to over the years because they're calling for it now, but it. When they leave there, there's another whole sense of what it means to be present, what it means to show up, right? And there's a lot of that work going on. And until we really come to a place that we understand that, you know, it's hard. Another question that I ask, because I hear this from my family, Families once, often when they receive a diagnosis, and certainly not all the time, oftentimes receiving an ALS diagnosis, and I would certainly assume other fatal diagnoses. It's not an easy thing, certainly, to hear, but I know that it's not an easy thing for a physician to give. And I hear that from my families. And so oftentimes I ask. And yet I have some families, their doctors are hugely important, and they put them on this pedestal and it's go for it. I hear you. I honor that. But a question I'll sometimes ask another question is truly, what qualifies a physician to talk about end of life? I'm not sure they teach it in schools. It gets back to the same thing. Unless a doctor, a physician, is willing to do their own inner work, review their own terrain about what it means to die, how can we truly have that conversation? It's just a question, and it's a way to inquire. In my perfect world, everyone in healthcare would go to the desert for two or three weeks, you know, and that's what we support. I support that work for healthcare professionals. I support that work for our families to bring in the resources that I know are in the world that can really have a profound influence and share in a really beautiful way other ways of living in this world that I really believe we know, that's ingrained in us. It's just culturally, we're not used to peeling the layers away. You know, are we willing to crack open a little bit, open up our heart where we can wallow on the floor for a little bit and cry with no one having to pick us up, but for someone to be there to support us.

Dr. Lisa Belisle:

Ron, I know this is just the beginning of a kind of ongoing conversation on this subject, and one that I hope that people will find thought provoking. I hope that people who are listening will spend some time thinking about not just als, but, but their own experience with end of life issues and their own need for mending and tending. How can people reach you? What is the website for compassionate care ALS?

Ron Hoffman:

Yeah, our website is ccals.org, c as in compassion, C as in care A L S.org that's our website.

Dr. Lisa Belisle:

And as you are, you're going through this process of you're early on in the process of building this education and retreat center and I imagine you'll keep people updated through the website.

Ron Hoffman:

Yes, it is a reality. It has become a reality. This has been a dream of mine for many, many, many years and many, many years ago it was a reality, but I walked away from it for many reasons and it's come back several times over the years and now it came back to us again and so we're doing it. And yeah, we'll keep you posted on that for sure. You can go to the website in the next coming weeks and there'll be some information on there. It's happening.

Dr. Lisa Belisle:

And people can also find your book Sacred Transforming Trauma to Grace While Tending the Terminally Ill, I imagine through same

Ron Hoffman:

website CCALS and the website should be up shortly.

Dr. Lisa Belisle:

I feel like after leaving this conversation, I just need to go sit somewhere and think because there's a lot of things that just sort of bubble up and there are a lot of things that we didn't even have a chance to talk about in the book. But I do encourage people to visit your website to read the book to learn more about what you're doing. I appreciate all the things that you are offering to people around, really around the country, but also in the state of Maine, patients and families with ALS and others. We've been speaking with Ron Hoffman of Compassionate Care ALS and author of Sacred Transforming Trauma to Grace While Tending the Terminally Ill. Thank you so much, Ron.

Ron Hoffman:

Thank you for having me.

Dr. Lisa Belisle:

You've been listening to the Dr. Lisa Radio Hour and podcast show number 137, ALS. Our guests have included Kate Galler, Roy Bouchard and Ron Hoffman. For more information on our guests and extended interviews, visit Dr. Lisa.org the Dr. Lisa Radio Hour and Podcast is downloadable for free on itunes. For a preview of each week's show, sign up for our e Newsletter and like our Dr. Lisa Facebook page. Follow me on Twitter and as bountiful one on Instagram. We'd love to hear from you. So please let us know what you think of the Dr. Lisa Radio Hour. We welcome your suggestions for future shows. Also let our spirit sponsors know that you have heard about them here. We are privileged that they enable us to bring the Dr. Lisa Radio Hour to you each week. This is Dr. Lisa Belisle. I hope that you have enjoyed our ALS show. Thank you for allowing me to be a part of your day. May you have a bountiful life.