Susan - US: Jim's Multiple Sclerosis (MS) 08 Jan 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.
Linda Elsegood: I'd like to introduce Susan Garvin from the US, I had the pleasure of meeting Susan and Jim in Nashville at the conference in 2010 this show is dedicated to Susan's late husband, Jim Garvin, who was an LDN user and a huge advocate of LDN. Thank you for joining me today. Susan.
Susan Garvin: Oh, I'm so pleased. And Jim is watching from above cause he would talk anybody's ear off about LDN and its many uses for ailments that you had. He would talk anybody's ear off.
Linda Elsegood: Well this is a tribute to Jim, could you tell us about Jim and your life together, how long you were married.
Susan Garvin: Well, Jim and I were married at age 20 in 1971. We were married to the same people for just shy of 48 years when he passed.
And he was just really dedicated to his family, friends, and his community. Jim was a cable splicer for the phone company he retired from there, after his diagnosis with MS on January 20, 2000, he always said, it's his birthday present. Cause he was born in January, he didn't feel sorry for himself about the diagnosis.
He goes if it's not me. Who else could it be? You know? Jim was diagnosed and actually was told by the doctor that he had Lyme disease, but he got mixed up with another patient. So it was an MS diagnosis. So he retired from the phone company as a cable splicer because of course his many MS symptoms.
And he would find himself ready to pass out, not remember things, walking became a burden for him. We used to call it wall walking where he had to hold on to the walls of the house to get around. At one point he did use a wheelchair because he was unsteady on his feet.
He, he was taking Betaferon because the doctor wanted him on it. And for a man that was over 250 pounds, just shivering on the bed with flu-like symptoms every other day was pretty hard to watch and see. But he was doing an internet search for other alternative treatments for MS and actually came across some little tidbits of information about low dose naltrexone. So Jim, he decided to call people on the message board that he was searching on. Fin d out that it was really a truly a good treatment for MS and he took a leap of faith and talked the Dr into it, she was not his neurologist who was not really on board but prescribed it anyway, so we got a compounded prescription in the next town over. He came home and tried it and the next day Jim had an improvement in his symptoms of balance. He was able to stand on one foot for balance and so excited as he was, he just called everybody at the doctor's office to just say, thank you.
The doctor was not impressed with that. And after the next consultation, she actually wanted to remove us as patients. So anyway, we had a lot of help and he felt so much better in his symptoms. He was inspired to reach out and tell everybody about it.
So, we have a lot of friends that we met out at the Nashville conference and stayed in touch with them. Jim was known as captain caveman because he would always reach out to people on the internet, and then he called it, go back to his cave. So he was dubbed by Brenda as a captain caveman we had a lot of fun with that.
Jim had, in his own words, he would say he had a turnaround of his symptoms. Have ups and downs and better days and he says he could get out of the bed, make it to the throne room without falling down or having an accident, make it there by himself without a cane or the wheelchair.
And, he did have energy. We had a good life. Jim helped care for a lot of family members. We resumed camping and we pulled a fifth-wheel trailer for camping and visited Arizona. And we just had a very large social world because of that. So again, it gave him an opportunity to teach other people about LDN.
And one of our friends gave him some business cards, printed up with our name, address, and so on. And it said, ask me about LDN. Of course, he passed those out everywhere.
We went to a local viewing of a documentary on low dose naltrexone for Lyme disease. We had a conversation with a man in the lobby afterwards, and he goes on and on. He goes. I had my aunt taking this and, and some crazy man told her about all of this, and LDN and Jim goes, well, you're looking at that crazy man.
We had big chuckles that it comes around and meeting other people that it changed their lives. That really meant a lot to him. We made a lot of good friends that
Linda Elsegood: I remember meeting you on the, General Jackson, Mississippi riverboat after the conference in Nashville.
Susan Garvin: Oh, it was so wonderful. Yes. We have a lot of good friends and, Paul and Altha, Brenda was there, Crystal. We have a lot of good memories of those times andwe're just so pleased about how LDN is really changing the world.
We have results that are real now. And when Jim first started it, it was just like, well, maybe it might help you. And you know, we love the testimonies of how it helped people. Jim was on the cutting edge, I would say, of learning and teaching and sharing about LDN as you are.
Linda Elsegood: When did Jim start taking LDN?
Susan Garvin: He was started in about January, February, about 2003, I think, 2003 so he was on it about 18 years, without an exacerbation.
And I have to say, Jim saw the neurologist the several days before he passed away, and his neurologist said MRIs taken a few months before, showed there are no changes in your MRIs from the previous and that tickled Jim today because to say that and it was proof that LDN was a life-changer for us. And Jim died of pancreatic cancer, which very few people live through a treatment plan on. But we do feel that it helped his life become meaningful.
Linda Elsegood: Well, Jim started around the same time as I did then cause I started in, um, December. The 3rd of December in 2003.
Susan Garvin: It's about that. Exactly.
Linda Elsegood: In those days, there were not many people taking LDN. The internet wasn't what it is today either you know. There are more trials and studies being done every month; somebody has done something. There is Facebook now, which there wasn't, or, might've been around, but it wasn't what it is today.
And people sharing information around the world, podcasts and documentaries, conferences, it's all growing momentum over the years. It's a far bigger movement now.
Susan Garvin: Absolutely. I mean, and when Jim researched it, he was in the low thousands on the message board that he was researching on and he sat there and he, he was so funny, had a wicked sense of humour, but he sat there and he said, I felt like somebody slapped me on the back of the head and said. Take a look at this, it can change your life. And again, he did his due diligence and researched that and talked to real people. And again, there is what we, we found that. Testimonies and talking to people made a huge difference. And I think again, Jim talking to other people that we met con a camping trip, after Jim had started this, met up with, people in the Santa Cruz area. And met with them in person and told them, look, I'm a real person. This has changed my life. That person that had MS started, it changed their life also. And you know, you can't take away those things, that life is changed for other people because of you.
Linda Elsegood: We have 35,000+ people on our main LDN Research Trust Facebook group.
I mean, that is an amazing amount of people, isn't it? I mean, if you put them all in one place at the same time, it would be a huge crowd.
Susan Garvin: Exactly. So, I know that people can take a for so many things, you know? And that that's what's been good for us to know. We share the books, we share testimonies and Facebook.
I mean, having all of those researchers and, and instead of sharing just one on one. We can share it through to the internet and have a larger audience. So we're very proud of the community and how it's grown.
Linda Elsegood: And patient testimonies are so reassuring and so inspirational for other people who feel, let's say somebody with alopecia who hasn't ever seen anybody with alopecia, let alone know anybody that's taking any kind of treatment. You feel very isolated and on your own, and it really does help to connect with other people who are in the same boat as you, who can talk to you and help. It really does make a big difference.
Susan Garvin: Yeah. that's true. So it's like we are here we're a purpose. And I just think that Jim was definitely one that was blessed. On LDN, he had an almost complete turn around of his symptoms. He still had moments, you know, fatigue and heat intolerance, but being able to take care of yourself and not be a burden on somebody, that was huge to him, that he didn't ever want to "be taken care of" by someone. He was active till the very end. Well that's good to hear, isn't it? That's the time when you think, well, yeah, I've had a good one. Yeah,
Linda Elsegood: He was amazing. So did you have children,
Susan Garvin: Yes. We had two,. Our son died about nine years ago. And then we have a daughter that is a teacher and she's taking a two year teaching position in Hong Kong. And we'll be home for her Christmas for a visiting family. So we are totally excited about that. My mother, that's going to be 91, lives with us; we have three dogs at the moment and, mother still goes camping with us. Jim is one that really helps take care of my mother. He gave up three months of our life to go take care of her in Arizona after my father died and invited her to live with us. He always said, if we didn't have her, he wouldn't have me. And he just told me every single day that he loved me. And he did that by showing love to others.
Linda Elsegood: Do you have any grandchildren?
Susan Garvin: Yes, I have two a 24-year-old beautician, granddaughter, and a 16-year-old, uh, still in high school. So, they'll be in for Christmas probably, and love being a part So, I have the grand dog, so the grand dog is staying with us through my daughter's time in Hong Kong. It's a loving schnauzer and we get to visit and cuddle with her along with our other two dogs. They want to be on your lap and cuddling. So it's like a puppy pile.
Linda Elsegood: Dogs are such great company and the way they follow you around.
Susan Garvin: Hmm. They are. And they loved Jim. Jim could teach him anything and they always wanted attention from him. So they were very comforting to him. Cause you know, there were times in the first part of his diagnosis, he'd just be sitting in the recliner, but he'd be laying back and have our little dog laying on his chest. And you know that that was his girlfriend. You know he would have a girlfriend on his chest or a little dog.
And those are cute pictures I keep in my mind.
Linda Elsegood: So what kinds of dogs do you have.
Susan Garvin: My oldest is a dachshund and Queensland max. She's got black spots and grey ticking. We have a white Vishaan that's practically toothless cause. she's lost her teeth. And then my daughter's dog, the miniature schnauzer. So a pretty energetic group considering.
Linda Elsegood: Well, it's been amazing speaking to you, Susan, and thank you so much for sharing Jim's story. You know, it's nice to be remembered for all the hard work that he did and to, you
Susan Garvin: Well, it's continuing on. I'll be a part of this community forever enough, for I know how life-changing it is for each one of us.
Linda Elsegood: Well, thank you so much for having been our guest today.
Susan Garvin: Well, thank you, Linda. I look forward to seeing you in person on another future date.
Linda Elsegood: You can bank on it. Thank you, Susan.
Susan Garvin: Bye-bye.
Linda Elsegood: [00:21:24] This show is sponsored by our members who made donations. We'd like to give them a very big thank you. We have to cover the monthly costs of the radio station software and with phone lines and phone calls to be able to continue with their idea of the show. And thank you for listening.
Any questions or comments you may have. Please email me at Contact@ldnresearchtrust.org I look forward to hearing from you. Thank you. Joining us today. We really appreciated your company. Until next time, stay safe and keep well.
