S2E24 Coffee Break with community member Roy Bartlett

Geoff Allix  00:02

Welcome to Living well with MS Coffee Break. I’m your host, Geoff Allix, we decided to do something a little different in expanding the range of content we produce here at Living Well with MS. Since our community forms the beating heart of Overcoming MS, we are commencing this special series called Coffee Break, which features short interviews with members of the OMS community, talking about their personal journeys, adopting and staying on the OMS seven step recovery program, the challenges they encountered, and how they overcame them, and their tips and tricks for sticking to the path that leads to better health. We hope you enjoy and learn from these brief chats between our regular episodes. And as always, your comments and suggestions are welcome by emailing [email protected]. That’s [email protected]. And don’t forget, if you enjoy these and other Living Well with MS podcast episodes, please leave a review on Apple podcasts or your favorite podcast listening platform. Joining us on this episode of the Living Well with MS Coffee Break is Roy Bartlett from New Zealand. Can you tell us a little bit about yourself, your family, your life where you live and anything about yourself that you’d like to share?

 

Roy Bartlett  01:16

Yeah, I live in a place called Papamoa Beach in the Western Bay of Plenty. With my wife, Julie. We have been together for about 25 years and we have three adult children and three grandsons and the grandsons are all boys. We have two sons and a daughter. I originally grew up in England and moved to New Zealand in 1971. I spent the first half of my working life as an engineer. And then around the mid 80s. I made a midlife career change. And I became a member of a family therapy team, at Glenburn center in Auckland. And it was a special facility for working with residential facility for working with family therapy with children who had particularly challenging behaviors. So that was a great, great experience. And I guess I’ve been on a personal journey of recovery since about 1980. Because I had a pretty traumatic experience that year. And a week later, I ended up with blurred vision, which wasn’t picked up at the time. But I was told later when I was diagnosed was my first experience of MS in optic neuritis. So that was my wake up call to start looking at getting myself in a better shape as a human being I guess. And so I’ve been on the road from recovery from that. And I guess the 1980s and the early 90s. Were pretty rocky, but it’s been pretty good since then.

 

Geoff Allix  03:24

So when were you diagnosed with MS and how long have you been following the OMS recovery program?

 

Roy Bartlett  03:30

I was diagnosed in 1988. And the story to that is the hospital actually sent me to Sydney to go on an MRI because there wasn’t an MRI in the country at that time. And I been suffering symptoms and I was getting so frustrated because then the neurologist would not tell me give me any clue on what might be wrong with me. And I found that quite challenging to live with. So to get on the plane to Sydney, he gave me a letter to deliver to the MRI center and hand over to the receptionist when I arrived so I steamed the letter open it said “Please check this person out for lesions on the brain. strongly suspect MS.” And like three days in Sydney I had the scans. Then I had to bring the photos back with another sealed letter which I steamed open, which actually said ‘yes, there are lesions on the brain This definitely looks like multiple sclerosis.” So I came back and I had to take the photos back to see the neurologist and he read the letter, put the photos up on his little screen on and turned around him in his very austere voice and say, “Oh, well, boy, my team and I will have to study these, make an appointment and we can, they will be able to give you a diagnosis.” So I was not endured with the neurologist, my family that very, very, very, very hard to keep my control, but at the time and walk out, say thank you. But, but I actually knew a field worker for the MS Society, who through another organization I was involved in. So I got ahold of her. And she came and saw me and gave me stuff to read. And so I was pretty pleased to find that all that stuff out. Because at least I knew what I was dealing with, you know, after 18 months of worrying about what it could be what it couldn’t be, I actually had something I could actually deal with. And through my therapy, try. I use my skills there, I made an assessment of assessing how much control you have over the symptoms of MS, and how much the symptoms have over me, it was 20 for me and 80 for them. And that was the benchmark I sent to measure my progress from then on in. And the first thing I realized from reading about MS was, I’d probably be my own worst enemy, in that when I’d had a relapse, I never actually allowed myself to get back to remission, you know, with a big mortgage and kids and everything else, I would get back into working and I’d hate I could see that I just had a relapse on a relapse on a relapse and relapse until about three weeks behind to it, I’d had to give up work altogether. So yeah, so I decided I’ve managed with the symptoms rather than just sit back and wait for another relapse. And within and with looking at trying to understand and manage my fatigue. Within four months, I got back into the workforce in a 20 hour, part time position. So that was, that was great. And I could see as, as I went through the years, I was getting 70-80% control over the symptoms. And my life was you know, pretty good, really. And, and then in 2000 I had two relapses in a year. And a friend of mine came to see me who had been to a clinic in Mexico, which acuity cancer after he’d been given the death sentence in Auckland, and said he’d inquired whether they had the treatment for MS. Which they had, and he sent me over there. And, and I decided to go. And I started his treatment, about the same time that I first come across George Jellinek’s book back in 2001, on managing MS. So I started on a treatment, I read George’s book and I thought God, I could have wrote half of half of the stuff in this book from my experience of what I learned over the years. And but this treatment proved to be amazing. I was only the sixth person with MS in the clinic that was put on it. But it just my symptoms just disappeared. You know, within three months, I felt so much better. And within 12 months, it was like I was feeling like I was 90% in control of my body. So I kept on that treatment until 2010 and then the cost of going to Mexico every year and the treatment. I couldn’t sustain it any longer. And in that year my MS symptoms started to flare up again. So that’s when I went on the retreat in New Zealand with George into in 2011. And I’ve been on the program ever since.

 

Geoff Allix  09:45

And what was the treatment in Mexico you had?

 

Roy Bartlett  09:49

it was that they actually it was it was a holistic homeopathic treatment, in which they I drew but to my blood, knowing that the antibodies that attack the immune system are in the blood, and the culture and made a vaccine, in some all drops. And my wife used to inject me every week. And the vaccine acted as an anti antibodies used to knock out the, the rogue antibodies that were attacking, my meylin sheath. So it was a very new treatment and come out to Germany and the person who I was, it was a chemist who was actually in charge of my treatment. I used to go and see the doctor there. And they were giving you the full once over and then sent me off to the chemist. And each time I went, they would draw new blood out and keep it for the year when I come back. And I had to let them know, six weeks before I was coming back, and they’d make up the new serum from the blood they held back. So it was yeah, it was great treatment, because it had no side effects as well. So it was it was a treat, it was a vaccine made from my own blood.

 

Geoff Allix  11:25

So how long have you been following the Overcoming MS program?

 

Roy Bartlett  11:31

Well, similar story really, coming from my diagnosis, my first step was to decide once I’d read stuff about what MS was that I would manage living with the symptoms, rather than just cope with any sort of relapses that they, you know, having to crop up. And I made a self assessment at that time that I had about 20% control over the symptoms of MS and MS had about 80% control over me. And what I would I realized, from what literature I read that what had happened for me I had a relapse. And before I ever got into remission if you like as I started to get probably 70% back to normal, because of a big mortgage and kids and whatever, I would get back in to work. And I’d have a relapse on a relapse. So I never actually come into remission, I just sort of relapse on the relapse. And about three weeks before I went to Sydney out, you know, I had to give up work all together. I was struggling to walk across the room. So I went from there. taking that approach. The second thing was I was to manage my fatigue. And four months later, I managed to get back into the workforce, job part time, 20 hours a week. So, you know, that’s where I started. And it wasn’t until 2011 that I actually started on the OMS program. But I had known about George’s work way back beginning year 2000. I come across his first book on managing MS. And I actually come out three years later, I actually met Gary McMahon for the first time when he came to New Zealand and became manager of the Auckland MS Society. And I was the person who actually introduced Gary to the book and suggested that he take George over to New Zealand and having talked to the membership. So that’s how George and Gary got to meet.

 

Geoff Allix  14:19

So you’re actually quite key to the history of OMS.

 

Roy Bartlett  14:23

So, you know, and we know the story from there. You know, nine years later, Gary resigned his position after running about seven retreats in New Zealand and went back to become CEO of OMS.

 

Geoff Allix  14:38

So what’s your favorite thing about the OMS program? And what do you feel has made the biggest positive impact for you?

 

Roy Bartlett  14:47

Well, I think overall, the program is what I call a total package. What I mean by that is providing me with a framework and a structure from which to explore, although you know, whether it’s the biological, the psychological, or social factors, physical factors that determine the cause the manifestation, and of the disease and also of have wellness. So, it gave me that whole structure to hang everything on and keep me focused. And had a time I had a mantra that I’d had for a number of years was I’m at my best when I’m a learner. And so again, the program gave me plenty to learn once more. And I guess, you know, I’ve been on the program, I’m went on the prep, I went on retreat in 2011, in New Zealand, with George and now, I’ve been on the program since then. And I guess, you know, the program isn’t again, another thing that’s kept my life moving forward.

 

Geoff Allix  16:17

And is there anything you found difficult to to adopt in the OMS Program?

 

Roy Bartlett  16:25

No, not really. Because like, I was already on a vegan diet. I follow a spiritual path, which meditation is part of, so yeah, there was not a lot, and I don’t, you know, I hadn’t drunk alcohol or smoke for about 20 years. Those sort of things came easy to me. So no, not really. I think, you know, I just sort of just moved into it. And at the time, I actually in my coming back home. What I discovered from the book that I collected at the retreat, there was a GP in Auckland, who’d written a endorsement for for the, for the program. She had MS herself. So I, the one thing that I did was I changed my doctor and enrolled in her practice, so that was, you know, it was really great relationship to have a doctor with him with MS. And who had gone through the program itself.

 

Geoff Allix  18:01

Yeah, I think a lot of people are quite familiar with the, their GP knowing less about their condition than they do. And I think if you’ve got a good doctor that you understand that and that my doctor is very much open about that. And you know, he’s, you know, he’s a generalist, he has to cover everything, but having a having a doctor following OMS would be fantastic.

 

Roy Bartlett  18:26

Yeah, that’s right. Yeah, we have some good conversations.

 

Geoff Allix  18:31

And I know you’re quite active in the OMS community, and you’re the ambassador of the Auckland circle in New Zealand. So can you tell us a bit about about that community and how that’s changed your journey?

 

Roy Bartlett  18:45

Yeah, I guess, being part of the community. I guess it’s the collective wisdom and creativity of its membership, really, all the members. Yeah, it’s like, somewhat some of the ways that they they get to overcome some of their challenges that’s been quite inspiring. And it’s just that motivation that you get from being with a group of like minded people. We’re all on the same journey, wanting to live a better and healthier life. And I think the third part is, knowing that you’ve got that group there, who are really rooting for you when you have to go through a rough patch.

 

Geoff Allix  19:33

And how have you had to adapt your daily healthy habits to the new realities and posed by COVID-19

 

Roy Bartlett  19:42

When COVID broke out back in early March, earlier this year, because I’m 73 years of age and I have a compromised immune system. Julie and I decided that we would interpret voluntary entry level 4 two weeks before the government actually put the whole country on level four. And then when we, when we came down to level three, we stayed on level four for another two weeks, and then went down to level three, and then we went down to level two, we follow that same process.

 

Geoff Allix  20:22

So just to explain to people around the world, level four in New Zealand is that a complete lockdown in your house.

 

Roy Bartlett  20:27

No work, just you’re allowed to leave your house to exercise for a walk. Level three, you can leave the house, you can, you can’t have a group of more than 10 people. Level two is you can on you can only travel so far from your house level two, you can travel. You can travel basically where you like. And you can gather up to 100 people. So those are the those are the sort of the major implications. So we’ve always kept on the, you know, giving ourselves two weeks extra protection, if you like, before venturing out to the more freedom. And of course, after three months where we didn’t have a case, and then a family of four got infected in Auckland, and immediately the government stuck Auckland on level three, and the rest of the country on level two, well, where we live, we could have just gone to level two, but we went on to level three. Because we just wanted to make sure we did everything possible we could not to take a risk. Yeah, so But apart from that, we get to our regular routines. And probably the greatest fun of lockdown was creating some new ones. You know, we started having candlelit dinners, you know, we got into online shopping, which we we decided well, why do we ever want to drive and going shopping center again, again, music evenings at Zoom meetings with friends from America, Sweden, UK, Switzerland. And then And then same around the people around New Zealand, we would either Skype or Zoom and telephone. So the other the, I think was being in the new home, we we’ve been doing little projects inside the house and outside with getting the garden established and so on. And the other thing is, I started writing my autobiography. So that yeah, it’s been pretty, pretty busy.

 

Geoff Allix  23:16

And do you have any other tips or tricks that you could share with our audience that might help them on their journeys?

 

Roy Bartlett  23:22

Yeah, I mean, I think firstly, when someone receives a diagnosis, you know, they need to understand this is a natural, healthy thing to grieve, the loss of whatever they perceive, you know, the diagnosis is dealing to them if you like. But it’s also equally important for them to know and understand and believe that despite that they can go on to build a healthy life has been important. So giving example back in the early 90s. I was invited by the Auckland society to speak to newly diagnosed groups of people with MS. And I always used to start my talk off with the same opening statement, which was, let me see how we go. Yeah, before I was diagnosed with the symptoms of MS. I used to be able to do 1001 things in my life, and now I can only do 999 And the difference is that 275 of the 999 things I do now are completely new and different from what I did before. And some of those 275 things that I used to do that I couldn’t do until I asked myself the question Roy you have now can you do this differently than what you did before, so you can get the same satisfaction. So I learned new ways of getting the same outcomes of what I was getting before. So life, to me was more exciting now than it was before. I was diagnosed with MS. That was mostly my opening statement, and then we go on from there and answer their questions or whatever.

 

Geoff Allix  25:33

That’s an excellent way of looking at it. Yeah.

 

Roy Bartlett  25:35

And I guess, you know, that’s one of the things that the OMS website is so many positive, you know, motivating stories of how people have changed their lives in positive ways. You know, their inspiration to us all.

 

Geoff Allix  25:51

And with that, I’d like to thank you very much for joining us on this episode of The Living well with MS. Coffee Break Roy Bartlett.