S3E16 Coffee Break with community member Joia Lewis

Geoff Allix  00:01

Welcome to Living Well with MS Coffee Break a part of the Overcoming MS podcast family, made for people with Multiple Sclerosis interested in making healthy lifestyle choices. Today you’ll meet someone living with MS from our global Overcoming MS community. Our guests will share their personal perspective on the positive and practical lifestyle changes they have made, which have helped them lead a fuller life. You can check out our show notes and for more information and useful links, you can find these on our website at overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. Finally, don’t forget to subscribe to the show on your favorite podcast platform so you never miss an episode. So get your favorite drink ready and let’s meet our guest. Welcome to Living Well with MS Coffee Break Number 18, where we are pleased to welcome Joia Lewis as our guest. Our coffee break series is your chance to get to know members of our diverse OMS community, in each episode you will join me for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories large and small. We hope you find common cause and a source of inspiration from the stories of these very special people. As always, your comments and suggestions are welcomed by emailing [email protected]. We hope you enjoy this episode’s conversation with Joia coming to you straight from Estoril in Portugal. So Joia, welcome to Living Well with the MS Coffee Break. We’re very pleased to have you on our program and just to tell you the purpose of this series is to get to know you better as one of the diverse members of our community, and we couldn’t get much more of a representative example than you. You’ve had quite an international and multicultural life, which has taken you full circle back to Portugal so could you tell us a bit about this whirlwind trajectory?

 

Joia Lewis  02:01

Well, I’m 66 now so it doesn’t feel like a whirlwind in retrospect, but let me start from the beginning. I was born here in Lisbon in the British Hospital in 1954. My family is from the United States, but they were here teaching in a Baptist seminary they were evangelical missionaries. So my younger brother and I were born here and I was here 10 years, they went back to the United States in 1964. So I was not returning but moving there as kind of an invisible foreigner because my adopted culture was certainly Southern European Portuguese, but my family’s culture was obviously from the United State and we lived in Massachusetts, Minnesota. I subsequently travelled back to Portugal and quite a bit around the world, but I ended up teaching in the United States, my career as a Professor of Philosophy of Science was mostly in California and Minnesota for about 30 years and after my mother passed away, my daughter who is now in her 30s, I thought perhaps it’s time to go back to Portugal. I always wanted to come back and live here. My MS neurologist in Minneapolis at the time was all for it, I’ve had a stable case of the rare form of MS; Primary Progressive, and it had been fairly stable for about 10 years. I had then done a medical retirement from teaching and she said maybe I have another 10 years in this kind of stability without too much progression. So I did return here in 2018, I live outside of Lisbon, and we’ll see how long you know, as long as I can live independently and move around with a cane and a walker, I will stay put.

 

Geoff Allix  04:22

And when were you diagnosed with PPMS? Could you provide some context?

 

Joia Lewis  04:27

It was in the year 2009. I was teaching at St. Paul College in St. Paul, Minnesotta and with the state insurance I was able to go to Mayo Clinic. It was not clear for several years what was going on. I had had symptoms on my left side, my left foot was refusing to leave the ground after walking on it for a bit and then by 2008 I could tell immediately in the morning that that foot you know, was not functioning like my right foot. So I began to go around to all the doctors, it was quite a mystery; was it orthopedic was it neurological was it, oh, I went to many, many different doctors. So the confirmation of Primary Progressive MS really came in 2012 from Mayo Clinic in Rochester, I had gone there and seen a team of physicians and by that time, I was having trouble with my entire left side, my hand as well. So I continued to teach it was quite a shock to me because I didn’t fit the profile of Relapsing Remitting MS. I had grown up here in Portugal, I had spent most of my career in California, again, Portugal, temperature in southern and northern California. So I had never heard of Primary Progressive and I went to the program director from the MS National Society in Minneapolis and I said, so where’s the support group for me? And he said, there isn’t one in the five state area, there were no groups for Primary Progressive and there are quite a few differences. So I started a group at the local darts bar comfort food place below my apartment, in St. Paul and 12 people showed up, some in tears saying I thought I was the only one, I never felt comfortable in the other MS groups because my case is so different. So that was quite something to learn from each other, I still meet with this group. I gave the group to my co facilitator, It’s half men, and people who were diagnosed mostly in their 50s and 60s.

 

Geoff Allix  07:10

So you’ve mentioned you’ve had a rich career as an academic as a professor of philosophy of science, and now you are essaying, you’re a blogger, occasional editor. So, how did your academic focus inform your approach to dealing with the realities of living with MS?

 

Joia Lewis  07:30

It certainly has informed it and it’s informed specifically the kind of testing that is done. Because I taught scientific reasoning, I taught statistics, I taught how to look at a study, does it provide evidence for a certain drug? And then I also participated in an NIH programme a study for PPMS specifically. So yes, I do look at studies from that point of view, It’s a little tricky; as a patient, you know, people don’t normally want to listen to you, you don’t have the credibility that you have as a colleague so that is interesting to me. For instance, I had the AstraZeneca vaccine here in Portugal in May, I knew the least about it, I didn’t expect to get it I was trying to find out from the Portuguese MS Society, if I should have that vaccine. Well, my choice was that one or go to the end of the line, which would be November. So I went ahead and got it. The first night was difficult, by the second day, I noticed I could straighten my fingers on my left hand. And I still can, this I have not been able to do for years, my hand has been like this. I could bend the knee on my left foot very quickly after getting up and put weight on it that again, was new. So I’ve been trying to contact the neurologist, I know that, you know, something may be the viral hypothesis of the origin of MS, since many of us have had Epstein Barr as I had back in the ’70s, I’m very curious about that.

 

Geoff Allix  09:29

So maybe, some side effects from the vaccine that are actually really positive possibly.

 

Joia Lewis  09:35

Yeah, yeah, we don’t know. But there’s a lot to learn with MS. The whole business of whether you have an active disease or inactive disease is confusing and I follow a number of groups to see what is happening, what kind’s of side effects people are getting specifically from Ocrevus, because that is now been approved for primary progressive, so I’m curious about these things. I myself have elected to choose a natural approach so when a colleague told me about Overcomingms.org, I was very interested. So I’ve known about you for some time and this is how I treat my condition with exercise, with nutrition.

 

Geoff Allix  10:20

And so when did you come across Overcoming MS.

 

Joia Lewis  10:24

It was with a friend in this primary progressive group, I started in St. Paul. So it would have been about five years ago. Then, two years ago, I found out there was an OMS circle in Portugal, I’ve been asked to take over this group, as Ambassador, we’re still in the process of finalising that. And the group sad to say, seems to have dispersed during this year of isolation of the pandemic. So I’m hoping people will get back together, I very much want to be able to confer with people who live here in Portugal and talk about this.

 

Geoff Allix  11:05

And how have you found OMS? How have you found that adopting it?

 

Joia Lewis  11:12

Well, I didn’t have to adopt much because most of it was right along the lines of what I was already doing. But I have made an effort to go by the guidelines for the diet, for instance, I am, I would say, 97% along with the diet, when people bring me food or take me out to eat, I tend to eat a little bit of something but what I order in my kitchen is according to the OMS guidelines. Also, because I’m very lazy, the cooking gene went from my mother to my daughter, they both love the kitchen, I never have, I tend to eat more raw food and all the fruits in the morning, thank you all the vegetables at night and I just, you know, it’s been easier to arrange my life like that, which fits someone with a disability also, because I’m very organised at home with that. The exercise, I was already doing that, what I did add with OMS were the meditations and I did some from time to time because I also deal with PTSD and anxiety. If you know, those don’t go with a 20 or 30 minute meditation all the time, however, the short one’s; the 5 minute, 10 minute, even the one minute karma one, they’re very useful. And I tell my friends with anxiety, no matter what you’re dealing with at the time, that even with a panic, you can sit down for one minute or even five minutes and go on from there. So I’ve moved on from the very short ones to see my latest one is the ‘Finding everything brighter on the inside’. I’ve been doing that meditation all week.

 

Geoff Allix  13:08

I do like the very short ones, I think you can sometimes nip things in the bud. So before something spirals, and you start thinking in your mind goes into a whirlwind, and you think actually you can very early, just one minute, get back to a sort of baseline. And so why did you choose to follow OMS? Was that from a scientific principles? Or did you hear it was doing well, for other people?

 

Joia Lewis  13:33

I think it’s a combination. You know, I’ve always have, even as a grad student objected to the body mind distinction, you know, it seems to me, our molecules don’t know if they’re physical or neurological or psychological or neurophysiological, are molecules just are and so I’ve always had more of a holistic approach to how we think about healing. So the fact that all that OMS puts together, what we would call the physical, psychological, even the spiritual if you want to bring that in on the meditation side and I would put that in the exercise too. I was a swimmer, there was certainly a state of euphoria, I would reach swimming laps, I wish my muscle memory would allow me to do that still, I did taekwondo for many years as well. And so I was used to thinking about the physics of something but also you know, how my mind, my eye coordination, hand eye coordination would function in breaking a board or slicing something, you know, it was very much all of me together. So this kind of approach is important to me, both philosophically and physiologically or you know, in any which way, I think we are whole beings and in order to live a healthy life, we need to address all of the parts of us.

 

Geoff Allix  15:10

And were there any parts of the OMS programme that you had problems with? Or was all fairly straightforward for you?

 

Joia Lewis  15:18

Dairy, the non dairy, because I love Greek yogurt, mostly I like parmesan cheese flavoring things. So I might occasionally have a spoonful or a bit of one or the other. But that I wondered about, but I do feel better and when friends insist on bringing me things, and it’s rich and creamy, I just don’t feel good. So over the last years, it’s been very clear to me that I do better physically, without the dairy and meat, because I lived in the United States, It wasn’t easy for me to eat meat at all, it was all mystery meat. Fish, I was used to Portuguese fish caught that morning in the ocean, something very fresh. So I’m probably more of a pescatarian as they say; a vegan with fish and so that was pretty straightforward. But that’s how I’ve dealt with it, that if I occasionally have a bite of something, and you know, say gluten, gluten is not one of them, but again, I feel better, I like quinoa, millet, corn, all the non gluten grains. But if I have a bit of wheat, I don’t freak out about it, I just, it’s an extra, it’s you know, I had a bite of cake at someone’s birthday party, but I know that I’ll be okay with just a bit of it and that my regular daily consumption is much more along those lines. So they work for me, what can I say?

 

Geoff Allix  17:02

So have you started to see improvements from following OMS?

 

Joia Lewis  17:07

Well, I think I would say yes, I would say the regularity of doing something over and over. Now, I have to say this last year has been challenging, and I have been more isolated than usual. I do stay in touch with friends all over the world. I’ve learned all the time zones through Zoom and this is my Zoom chair I’m sitting in right now, it’s right in the middle of my living room, not where it normally is when actual people come in. But I know that I do better you know, when I am exercising more. I’m a bit weaker, because I just haven’t been doing the physical therapy, the pool therapy that I did up to a year ago. I have a stationary bicycle, I try to use that every day for at least 20 minutes with arm exercises. So anything that gets my circulation going and even walking around the apartment is all yeah, I can tell that that’s what I need to be doing to keep going.

 

Geoff Allix  18:20

But yeah, it has been a difficult year. I think that’s one of the main things physical exercise outside, it’s definitely been hard. And as I understand it, you’ve got some thoughts to share with the community about ways in which they could deal with the anxiety surrounding experiencing MS symptoms. And as this is a critical area for anyone with MS, do you have any personal lessons or tips that you could share?

 

Joia Lewis  18:45

Absolutely. Since I was diagnosed already in my mid 50s you know, I was looking ahead to retirement when everything changed. I had already dealt with PTSD from a very difficult violent situation in my teenage years. Since I returned to Portugal, It’s been clear to me that the PTSD actually goes back quite a bit further to my childhood. So having dealt with that, and I see the PTSD as symptoms that are part of my life. In that way they merge with the MS as these are additional symptoms I now need to manage. But it is challenging to put them together and in some ways it helped me deal with the MS because MS symptoms tend to be more visible. So I’m very aware of doctors who treat the invisible symptoms as opposed to the visible ones. People respond to a person with a cane if you’re limping around, you know they know exactly something’s wrong; this person’s disabled. But if you’re having a crisis, an internal one that that is coming from your past, you know, and it’s bumping up against what’s external, which is coming from the present and these two things, you know, basically the past, present the internal external creates our sense of the future. And I was very aware of this already, and I was aware of how these things, how the symptoms affect my life and what I’m able to do. So I would say, advantages, disadvantages, it gave me more to deal with, but it also I had some tools that I brought to having MS late in life as I did, that I may not have had before, I wouldn’t wish it on anybody to deal with those kinds of symptoms. But there is a way to keep going and to survive to keep the hope, just enough above the despair, so that, you know, it’s worth getting up every morning.

 

Geoff Allix  21:10

Um, you’ve mentioned that you’re the Ambassador of the OMS Circle, which actually covers all of Portugal, your circle. Could you explain a bit about what the experience of that Ambassador role and being part of a circle has been like?

 

Joia Lewis  21:27

Well that’s new, I have not really done this yet. I haven’t gone through all the OMS process yet. A neuroscientist living nearby was unable to continue, he was the ambassador, they were in what I saw in the group, right now it’s a Facebook group, and I understand that OMS has another platform now to give us for these groups, which I helped to work with. There were about a half a dozen people and I had yet to meet them by the time I joined. So there’s only one person I’ve communicated with through the website and I’m looking forward to that, I’m hoping that these people come from all over Portugal and that I’ll be able to share with them and also learn from them about the health system here, about the challenges, about who is available for help, etc. So I don’t have a lot to bring you yet about it.

 

Geoff Allix  22:28

But are you managing to communicate virtually, you know, with Coronavirus?  I think most of the world we haven’t been able to have big meetings. So has there been, do you have a sort of a virtual community over Facebook or other virtual connection?

 

Joia Lewis  22:47

I do I follow a Healing MS Naturally group, I follow a group of people with SPMS or PPMS who are taking Ocrevus or who have stopped taking it. And I also keep in touch with the people from the primary progressive group I started back in Minnesota in 2012. And then, you know people with various kinds of immunodeficiencies like rheumatoid arthritis or lupus, I have friends who’ve been diagnosed with various conditions, and who face similar kinds of things. One of my friends with relapsing remitting back in Minnesota, alerted me to the long Covid cases that some people who can’t seem to shake Covid have muscle weakness, fatigue, they have some of the same things that people with MS have. So this was very curious to me and the fact that now some of them appear to have been helped by the vaccine. So all of this information, I’m hoping will turn into a good thing. It’s maybe not much of a silver lining at this point coming out of the pandemic, as we all hoped to this year but my hunch is that there’s going to be research that will be good for all of us, all of us with autoimmune conditions, all of us with neurodegenerative conditions, so I’m hoping to see that in the next years.

 

Geoff Allix  24:27

Well they think that the way they’ve developed some of the vaccines may help with MS treatments in the future. I mean, it could because there was so much resource put into it. But I don’t know this, but I would presume more than any other condition has ever been, I would imagine the funding would have been phenomenal and so they basically found that these MRNA vaccines that they’ve created, which were groundbreaking and they said actually we can use these to treat all manner of conditions that we don’t know about yet, but MS was one of them that was listed as a potential and yeah, there may be all sorts of things come out of this just because of that investment in science.

 

Joia Lewis  25:12

Yes, it was a terrific effort, all global and I’m glad to hear that from the UK, I’m hoping this will be the case everywhere.

 

Geoff Allix  25:25

And if you tap into your experience with MS generally or OMS, specifically, for a nugget of wisdom, to help get people to ease into it better and better adopt the OMS program, what would that advice be?

 

Joia Lewis  25:43

Well, I was talking before about a holistic approach. In seeing yourself as a complicated being, with the physical side, psychological side, what comes with that also is taking control, having a sense of agency about your illness, one of the first thing that goes with disability is, you know, it hacks away your sense of agency that you can make decisions about your life, that is one of the most difficult things to all of a sudden be dependent about in areas where you were formerly independent. So I think the OMS program gives you a way of feeling that there is, you can’t be in charge of everything, but there’s quite a bit that you can be in charge of. And that is very good for those of us suffering with a chronic condition. We’re not going to get the closure of grieving for something that is passed, because we’re constantly grieving a new loss tomorrow, yet another loss. So we have to learn how to grieve these chronic losses in a new way. And also feel that, you know, we’re not giving up because there is quite a bit again, that we can do in treating our own health. So that to me is very positive about the OMS program.

 

Geoff Allix  27:17

With that, I’d like to thank you very much for joining us, Joia Lewis.

 

Joia Lewis  27:22

Thank you so much. It was an honor to be here and to talk about this, thank you.

 

Geoff Allix  27:30

Please tune in on May the 12th for the second installment of ‘Ask Jack’ our special five part series where certified OMS foodie and professional chef Jack McNulty answers cooking and food related questions from you; our OMS community. This is a tasty morsel you won’t want to miss and remember, you could submit your questions for future Ask Jack episodes by emailing them to [email protected]. Please subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS on your favorite podcast listening app and don’t be shy if you’d like the program please leave a review on Apple podcasts or whatever you tune into to listen to the show and feel free to share your comments and suggestions by emailing [email protected]. Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode’s shownotes at overcomingms.org/podcast. You’ll find all sorts of useful links and bonus information there. If you’d like to be featured in a future Coffee Break episode or have any suggestions, please email us at [email protected] You can also subscribe to the show on your favorite podcast platform so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you’d like to support the Overcoming MS charity and help keep our podcast advertising free you can donate online at overcomingms.org/donate Thank you for your support. Living Well with MS Coffee Break is produced by Overcoming MS the world’s leading Multiple Sclerosis healthy lifestyle charity. We are here to help, inform, support and empower everyone affected by MS. To find out more and subscribe to our E newsletter, please visit visit our website at overcomingms.org

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