John Alexander – Part 1

John Alexander joins us for the first of two episodes to talk about his book, The Journey Begins with 1,000 Miles, to share the benefits he has experienced from cycling, and to discuss his important and rewarding work as an Ambassador for the Davis Phinney Foundation. John offers not only his insight as a person living with Parkinson’s, but also valuable information about the programs offered by the Davis Phinney Foundation.

Read Show Notes

Chad: [00:00:01] Today we're excited to welcome John Alexander to the show.

Chad: [00:00:12] John is someone that I can honestly say that Tonya and I both admire for his dedication to the Parkinson's community and his optimistic approach to daily life with Parkinson's. John is an ambassador for the Davis Phinney Foundation and a published author. John has a lot to offer in this interview, so we're going to break it up into two episodes. In the first episode we'll chat about his book - The Journey Begins With a Thousand Miles, we'll cover the benefits he's experienced from cycling, and we'll talk about John's role as an ambassador for the Davis Phinney Foundation. In the second episode John will share more about his approach to living with Parkinson's and the acronym that he's created to describe that approach. He calls it THRIVING. I think that's something we can all benefit from hearing. Let's kick things off with the first part of our interview. Welcome to the show John.

John: [00:01:10] Thank you Chad. Glad to be here.

Chad: [00:01:13] People have described you as a natural connector it's one of the things you talk about in your book and that trait is important to a lot of what I think we're going to talk about on this episode. And it's an important part of who you are. Could you talk about what that means to you to be a connector?

John: [00:01:28] Well this is a term that actually came up all the way back when I was in college and friends have commented on that and said it then and I've said it since that a natural trait that I seem to have is the interest and ability to try to bring people together people that I find interesting and fascinating and have a particular skill that is something that others should know about. And I seem to find a way to introduce them to others who I think may have some similar interests. And I probably found that to be the case throughout my working career as well. But it's has truly come full circle since I've been involved with the Parkinson community. And you know with that I mean that I've also had the ability to to find information that was useful to myself or those close to me. And as I've found that information particularly about Parkinson's I've wanted to share that with other people who are trying to come to terms with say a recent diagnosis or where they're at in their Parkinson's journey. And so by being a connector I feel most fulfilled when I'm able to get people the information that they need that will help them have a a better quality of life.

Chad: [00:02:50] You know that's really interesting John. One of things I thought of as you were talking about that is that once Tonya reached a point where she was comfortable talking about having Parkinson's and was comfortable with me talking about it, one of the things I slowly started to do over time was that within five or ten minutes of meeting someone, you know a stranger who I was becoming acquainted with, I would mentioned something about either Tonya having Parkinson's, or usually in a more roundabout way, talk about the fact that we do a lot of work with the Michael J Fox Foundation. At first I just kind of did it without thinking about it. And then I started to realize that a surprisingly high percentage of the time I made a connection in some way with that person that it turns out that they had a family member who had it or they had a friend who had Parkinson's and there was something more they wanted to know or they wanted to know about the work in the Michael J Fox Foundation. It's really interesting how that can just kind of happened that when you're open about what's going on you know in the end your connection to the Parkinson's community how you can then from that develop an opportunity or create an opportunity to share information or make a connection. Do you typically let people know that you have Parkinson's or that you're involved in the Davis Phinney foundation fairly early on in getting to know them?

John: [00:04:21] I think I do tend to do that. It's not uncommon for people again who are newly diagnosed to want to keep that to themselves. And there's a number of good reasons to do that. One, you're just getting used to the idea yourself. Or two, depending on whom you have shared that with already have you shared with your family have you shared share with your employer and such. Or three, what level of indication might you display that would let people know that you possibly might might have Parkinson's.

John: [00:04:53] But what I found in one, and really it's been repeated, case was when ask someone to donate to a cause and told them it is related to Parkinson's, that person had a very strong connection to like a relative that had it and who meant a great deal to them. And that person, as you said, definitely wanted to have more information. So I think you can become more comfortable in talking about it. And I think by being the one who introduces the topic you have more control over how much you do reveal and what you share.

Chad: [00:06:11] I'm going to ask Tonya about this, and I'm going to disclose to you and our listeners now I actually don't know the answer to this question, but...

Tonya: [00:06:17] You're breaking the Golden Rule! You never ask a question you don't know the answer to.

Chad: [00:06:23] That only applies as lawyers.

Chad: [00:06:24] That doesn't apply as podcasters. I don't know if that applies in couples. Hopefully we won't need therapy after this question. So let me ask you, Tonya, once you got past that denial phase did you find yourself revealing more commonly to strangers, or I'll describe as people you're becoming acquainted with, that you have Parkinson's?

Tonya: [00:06:48] I still struggled with that actually up until about the past year despite me going public if you will with my diagnosis. I just didn't feel like talking about it quite honestly. So it was only within the past year that I meet people and then I'll bring it up oh we're training for the marathon to raise money for the Michael J Fox Foundation. I have Parkinson's disease and kind of go from there.

Chad: [00:07:16] It's interesting that that's Tonya's response considering that we're currently sitting on a podcast where we're publicizing to the entire world that she has Parkinson's. But on that one-on-one setting it can be much more challenging to talk about it. Part of the reason I asked Tonya the question is I suspected that I might get - compared to your answer John - maybe a little different response. And to me the important thing about that is that for each individual they have to decide what their comfort level is in talking about having Parkinson's, when they're ready to talk about it, how they're ready to talk about it. And it could vary depending upon the setting and who you're talking to.

John: [00:07:56] Yeah that's. That's very much true.

Chad: [00:07:58] I think that's valuable for our listeners to hear that because you know and the range of people who are listening to this depending on where they are in their stage of their diagnosis and with the disease I'm confident are varying levels of comfort among our listeners in terms of their willingness to talk about this. But when they reach a point where they're comfortable talking about it, I think it's great to hear from you John and from Tonya both that there are some fantastic connections you can make that can assist you in achieving fundraising goals or raising awareness or connecting a complete stranger to a resource or to information they desperately need.

Chad: [00:08:38] Let me kind of bring us back to one of the ways that you've used your skill as a natural connector is as an ambassador for the Davis Phinney Foundation. Can you talk a little bit about your role as an ambassador and for those listeners who don't know what the objectives of the David Davis Foundation are?

John: [00:09:00] The Foundation was was created by an individual of by the name of Davis Finney. Davis was an Olympic cyclist who won a bronze medal in the other Olympics and it was one of the first Americans to win a stage of the Tour de France. He's actually to this day the winningest American cyclist of all time because he was a sprinter. He is the person that they put in a position to make that last push to to win the race. He had a great cycling career and as he was getting close to the end of that he started to parlay that into some other opportunities and had signed up to become a television announcer for an elite cycling. And around that time he was about age 40 at that time. He began to develop some some symptoms of Parkinson's. Some tremor, some issues with speaking, etc. and that siderailed the potential for having this this career as a public commentator. So, he took a little bit time to get his head around that because he had just come out of you know come off of you know having to make the transition from from being a performing athlete everyday to going into something else.

John: [00:10:29] But he he reached a point where he said - I'd like to do something with this to help the other people who have this condition. And while there are other groups - and you know it's obviously well documented that Michael J Fox Foundation does a tremendous job in research and the you know close to what is about eight hundred million dollars that they've raised to promote research and to promote all kinds of things to benefit the Parkinson's community. What Davis set out to do was to simply help people with Parkinson's to live well today to do what they can proactively once they get a diagnosis and as a result to have a better life and a much longer life with the condition.

John: [00:11:15] The one quote that I like to take from Michael J Fox is that "you don't die from Parkinson's you die with it." Which to me, when I found that early on meant that - OK, this isn't like a diagnosis of an aggressive form of cancer where six months later you can expect to be getting your card punched with Parkinson's. The average age people are diagnosed is around age 60, but in many cases people have been diagnosed much younger and is becoming even more common for people to have what's called Young Onset Parkinson's, which is obviously what Tonya has was diagnosed with.

John: [00:11:53] The Davis Finney Foundation has has truly grown and some of the work that they do is to hold events called a Victory Summit. And that's a full day event of information. They bring together medical professionals, some of the research doctors and clinicians, physical therapists, occupational therapists, speech therapists, anyone who has a an interest in the condition and can provide some light on to what can you do to help yourself. They focus on a number of different areas. They focus on activity, they focus on exercise for example, which is commonly stated now is as important as your medication.

John: [00:13:10] They also talk about being informed - getting the accurate information that you need in order to deal with your condition. They talk about being prepared to go to your doctor's visits. So, you're not just going and showing up and having the doctor look you over and say - "OK" you know come back in six months and you know take these pills. You're part of the treatment process. You're you're part of analyzing what's taking place. You're part of deciding together with your medical team what do you need to be doing in the next period of time. And as such you'd have much more productive visitations with your medical team.

John: [00:14:20] The ambassador group came about about four years ago now. And what the Davis Phinney Foundation did was to reach out to a number of individuals who had been active in some of their their events and programs and to have us be out in the community sharing some of the information that the Foundation had accumulated, as well as sharing their own stories. So, in my role as an ambassador for the Davis Phinney Foundation, I have spoken in front of Parkinson's support groups in a number of different areas.

John: [00:15:17] The whole idea of the Ambassador is that we are out there to let people know that resources are available. That there is hope. That there are ways to get to get useful information - not just whatever is the hot topic of the week on the Internet - but to get verified information that can improve their condition and show them a way to truly live well. So that's been extremely rewarding in the work that I've done with them. And the Ambassador Program is about to double in size. We currently have about 15 ambassadors and that's going to go up to almost 35 or 40 in this coming year.

Chad: [00:16:01] That's fantastic. And are the ambassadors spread all across the country?

John: [00:16:06] Yeah they are they with the initial group being about 10 individuals they did their best to kind of position people you know all across the country.

Tonya: [00:16:34] You raise a great point about connecting with others who are experiencing the same condition. And I think that's particularly important for newly diagnosed. I'm sitting here thinking if I had to go back and change one thing it would probably be - I would tell myself at the time I was diagnosed - find others who share this disease and connect with them because connecting is just such a tremendous experience that makes you feel like you're not alone. So, with that being said, for someone who is newly diagnosed that doesn't necessarily want to come out and go public or go to an event, can they watch the Victory Summits online or can they reach out to an ambassador via e-mail?

John: [00:17:24] Yes, they definitely can. The ambassadors are all listed on the Davis Phinney Web site which is simply DPF.org. And, if you look for the ambassadors, our contact information is available to anyone who wants to find it and then they can connect directly with us. And you know we're always glad to have a phone call, share information, respond to questions, etc.

John: [00:17:53] As far as an event like the Victory Summit - a little bit more about that event - they held about 8 to 10 of those per year, and those again are spread throughout the country and for that matter a few international locations, and they change them every year so that if you don't happen to find one that's going to be in your area any time soon you could look to the future and there might be one coming your way. But the last couple of events they've actually made those a live webinar type of event so a person anywhere with an internet connection could tune in and get the same type of great stories and recommendations and suggestions that a person who is attending those in person gets.

John: [00:18:44] One of the things that's really special about their events is that they do not charge for a victory summit. It's offered at no charge. What they do is a they suggest a kind of a pay-it-forward, where the people who have attended they suggest that they make a donation to be able to to pay for others to be able to come to that event at a later time.

Tonya: [00:19:06] That's outstanding. I mean the resources available online these days are just vastly different from when I was initially diagnosed over a decade ago. So I'm really pleased to hear that.

John: [00:19:19] Yeah and I would also say as far as attending a group it's becoming easier. And through groups like the David Phinney Foundation or some very simple online searches you can find a Parkinson's support group in your area.

John: [00:19:34] Now when you're at the point where you'd like to to go to one - go with an open mind. Often the major support groups tend to fit with the more traditional Parkinson's patients. By that I mean a higher age demographic because some of the groups only meet say during the week on a Tuesday afternoon, while the average person is still working and would find it difficult to get to that. But the good news is that there are more and more support groups that are also beginning to focus on people with younger onset Parkinson's and those meetings often take place say in the evening.

Chad: [00:20:56] That's great information you provided John and I think it's really important that on our podcast we highlight the different organizations foundations that exist out there and the areas that they specialize in, because as you pointed out they don't all do the same thing. Michael J. Fox Foundation historically is focused primarily on research. The Davis Phinney Foundation has much more of a focus on living with the disease and not just living but thriving notwithstanding having the disease.

John: [00:21:57] Well in some of the research has been done say by the Davis Phinney Foundation - what they're focused on is quality of life type projects. One of those for example was a project that started probably about ten or twelve years ago and that was focused on on cycling and the benefits of cycling. And they funded some research that was being done by Dr. Jay Alberts at the Cleveland Clinic and he had discovered that writing as a bike at a consistent pace for a certain amount of time did tend to push back on new Parkinson's symptoms. So they're focused at little more on that type of research.

Chad: [00:22:45] Which is a great segue into your book called The Journey Begins with a Thousand Miles. A central theme in your book is the benefits that you've experienced from cycling and the connections you've made through cycling.

John: [00:23:57] Bike riding was something that was always always kind of fun. And after I was diagnosed I went for a little bit of time where I didn't really do much of anything. I was fifty-seven years old when I was when I was diagnosed with Parkinson's. So you know I didn't quite fall into the young onset category, which is considered like 50 years or earlier, though I still like to think that this was early for me. And thought I hadn't been exercising a lot anyway, and I probably should get out and do some more. So I took my bike out and I had a good bike that I'd come across which was called a hybrid. It's more of a comfort type bike rather than like a road racing type bike and that sort of sort of thing.

John: [00:24:55] I took advantage of a program that was fairly new to the area called Cycling Savvy in the Orlando area and it's now a national program. But what that program did was gave me the skills and confidence to ride whenever and wherever I wanted to go and out of that came again another sense of community with the other individuals I was riding with. Now these weren't necessarily individuals with Parkinson's but my symptoms were fairly well controlled at the time and so I was able to just go have fun with a bunch of people doing something I love to enjoy.

John: [00:26:00] And it also became my way of getting you know more consistent exercise and doing something that in the long run was good for me in terms of my Parkinson's disease.

Chad: [00:26:55] In your book you share some pretty interesting and somewhat entertaining stories about different rides that you've taken to different places you've written your bike one of which that stood out to us was you've ridden your bike in Columbus Circle in New York City which is for those who haven't experienced Columbus Circle has to be one of the busiest places on the entire planet in terms of automobile traffic foot traffic and horse drawn carriage traffic and apparently also cycling - normally in petty cabs as Tonya and I have experienced - which was a harrowing experience by the way. So what in the world led you to decide to ride your bike through Columbus Circle?

John: [00:27:37] Well what I wanted to do. My goal was to go to Central Park and to ride my bike in Central Park. And I knew enough about that to know that once I was in Central Park everything was fairly well contained. There were horse drawn carriages as you mentioned but I did a little bit of research at the hotel and I found a place where I could rent a bike but that was on one of the main streets. There was a bit south I think southwest of Central Park. Little did I know that if I researched a bit further I would have found that they actually rent bikes physically in Central Park. So I did have to get from I think that's fifty seventh straight or something. I didn't have to get from there up to Central Park. And that took me directly through through Columbus Circle which is a huge roundabout way and I think about what six seven eight lanes. And once you get into that is kind of a vortex you're just you're just captured and you've got to make your way around.

Tonya: [00:29:01] Well I was sitting here just laughing I only had tears in my eyes because I had the same reaction when I read your book. I thought it's crazy because Chad I had an experience at biking experience but we were not in control of the bike. We took a petty cab and I thought we were going to die.

Chad: [00:29:23] Yeah right. Your petty cab in New York on a particularly during rush hour is it can be a harrowing experience. It's a lot like riding a cab except you don't have a know steel around you to give you a certain level of comfort. It's just you in the open air and a cyclist.

Tonya: [00:29:39] That's right. I know I'm not so sure that our cyclists have taken the cycling savvy course.

John: [00:29:45] Probably not - they take the kamikaze course I think

Chad: [00:30:47] John, as I understand it you've reached a rather significant milestone in terms of thousands of miles ridden. How many miles have you ridden at this point.

John: [00:31:08] Probably about forty five hundred miles or so. OK. And so so that initial thousand that I describe really came about as once I did start to actively ride. I started literally from the day that I took that class which was and I think it was November of 2010. I just you know kept a log. There's a lot of different ways and tools you can use to do this. But every time I went for a ride I noted the number of miles and and added it to an increasing total and I never had any kind of thought or initial aspiration for doing something that lofty. But by just getting involved with a few group rides and doing some on my own, all the sudden I was at two hundred miles and then I heard about an event that I decided to take part in. It was a ride in South Dakota called "Ride with Larry" and this is pretty interesting from a number of directions. Ride with Larry was created by a gentleman named Larry Smith who at the time had been diagnosed for over 22 years. He had been Captain of police in Connecticut and when he was diagnosed.

John: [00:32:31] He told his wife he wanted to do something really big before it's too late and the usual thing for cyclists is to ride across America. And obviously that's a huge adventure for just about anybody. HIs wife said Larry that's a great idea but let's throttle that back a little bit. And so what they chose to do was to ride across their state at the time of South Dakota which north to south is 300 miles. And they set up a team complete with an RV which would be really their mobile kitchen and support for them. And with with a small group of people initially about 10 people they began their rides and they did broke it up in about five days.

John: [00:33:42] And at the end of each day they would meet with the Parkinson community in the town that they'd ended up in and share their story - what they were doing, how they learned about the benefits of exercise, and just beginning to share some of the message that would help other people with Parkinson's. His niece and her husband were actually documentary filmmakers and they decided to tell his story or capture a story in film and they put out a kind of a trailer which included Larry asking people to come up to South Dakota and join him for this adventure. And I knew that that was just completely speaking to me. Now here just a few months before I hadn't ridden on a road at all and I hadn't ridden that many miles.

John: [00:34:31] Once I decide to go and I invited my my son to come join me - to come in fly in from Los Angeles. Which was interesting I called him up and said "Brian would you like to go to South Dakota and ride bikes with Dad?" He said sure. I called him back 10 minutes later and go "do you even on a bike?" He said "no.".

Chad: [00:34:47] So that was my question - was your son a cyclist at the time that you made this request of him?

John: [00:34:55] No he wasn't. So we got him hooked up with a bike and he began doing training and he was phenomenal. He did a great job. And he is one of what - many of what I call my guardian angels - who you know kept an eye out for me and kept me safe during the ride.

John: [00:35:12] But you know fast forwarding that. So we went up for simply the last day of the event which was a sixty-five mile bike ride. And it was amazing to see Larry's spirit and tenacity to meet other people and hear all kinds of other stories of what people were doing. I met one gentleman who was 93 years old during this ride. So there is just a tremendous amount of camaraderie and you know lessons that were learned from that ride. But the film did end up getting made and I felt good about the fact that stayed very connected with with the film crew and I began writing letters to let people know about this fabulous film. And so I like to think that was instrumental in helping it to get into the Orlando Film Festival the Temple film festival and even the Cleveland film festival. But every one of the 10 or 12 film festivals that it was in both domestically and internationally it won the most inspirational film.

John: [00:36:15] And I was really excited to see recently that there was a Parkinson's group called Parkinson Life in Europe and they published a list of must see films about Parkinson's and "Ride with Larry" is one of those films that's available on the Amazon. Not only is it you know inspirational the fact that this gentleman case had this disease is that it for a long time. And he goes on the campuses this athletic feat but it's a true love story between the Larry and his wife Betty who is his his main caregiver.

John: [00:36:57] Anyway when I by the time I'd done the ride with them I had ridden 500 miles so I decided to keep going and had a couple of friends who said you know we'll help you get there. By that they were involved in other group rides and we fit in a few of those.

John: [00:37:24] And one year from the date that I took my Cycling Savvy class - there happened to be a ride that was on Veterans Day. And so one of the friends I was going to ride with had another buddy come along and that gentleman had been a Marine. So he's wearing a Semper Fi jersey - on the day that we decided to cap off by achieving our goal of writing a thousand miles in one year. And it was really meaningful to do that.

John: [00:38:00] Now I use that in the book is The journey begins with a thousand miles was - I had been told about a year-and-a-half before that I had what is considered by many to be a progressive degenerative neurological disease for which there is no cure, and I was able to do something that tested my mettle a little bit. But it was enriching and it made me feel better and I felt more in control of my life and I think other people have gotten a good message from it as well.

John: [00:39:00] The subtitle of the book is you mentioned the word "thriving." But I say thriving with Parkinson's disease through hope, inspiration, and perseverance. The reason I say "with" instead of "in spite of" Parkinson's disease is because I've actually found that - even though it wasn't a choice going down this path of living with Parkinson's - I've met so many phenomenal people that have enriched my life. And made me not only be able to cope but to go to a new level as a person and as someone that can help others as well by the fact that I came down with something that I certainly didn't expect to do but I'm trying my best to make the most of.

Chad: [00:40:11] John which you just talked about resonates so much with us because, you know, having talked with Tonya on several occasions, that her experience is similar to yours in terms of being diagnosed with Parkinson's. And living and thriving with Parkinson's disease, as you describe it, has led her to do to do so many things she wouldn't have otherwise done and to make connections she wouldn't have otherwise made. And it's something she's talked about on the podcast - it's something she's spoken about publicly. In that way your journeys are very similar. But for her rather than cycling it's been running and returning to something that she loved to do pre-Parkinson's and taking it to a completely different level by running the New York City Marathon - which is she had never run a marathon before.

Chad: [00:41:03] I think this is clear from your what you said a moment ago but just to make it clear - would you have ridden 1000 miles and achieved this incredible accomplishment if you had not been diagnosed with Parkinson's - would you have ever gone down that road?

John: [00:41:25] No I don't think in a million million years I would have done that because it just didn't see a need or a purpose to do it.

John: [00:41:58] But there and there's there's more and more types of activities that are becoming available to people with Parkinson's and actually adapted specifically so that you know they work well with to maximize the positive outcome of helping a person to have you know more mobility to improve their strength and their balance so that they don't fall and have an issue with that.

John: [00:42:24] And as you as you meet more and more people you realize that you can do much more than you ever considered possible. And yet at the same time I think we've all talked about this too. You have to choose to do what works best for you. We know some folks who have done some remarkable athletic things but that's not for everybody. Some people simply won't be able to do that.

John: [00:43:50] There's a program called Rock Steady Boxing that I spoke with many of their coaches from around the country and told them my story of not being able continue with boxing. And they said - If you'd been in my class I would have asked you questions beforehand so you would not have been put in that position and you probably would be doing this on a regular basis. So it's good to know that things are being done that will not only give us opportunities to stick it out and move and become stronger but also protect us as well.

Chad: [00:44:29] Absolutely and the Rock Steady Boxing program has become wildly popular in the last few years and I think we've talked about on the podcast before and at some point we'll probably have somebody on to talk about that program because boxing is one of the things that Tonya does that she's experienced tremendous benefits from. She doesn't do it through a Rock Steady - she's got a trainer she works with.

Chad: [00:45:01] John I think this is a good stopping point for us since we're going to break this up into two episodes because there is so much to talk about and you've shared some tremendous resources with our listeners during this episode. What we want to do on the next episode is talk about an acronym that you developed. We've talked about this word thriving and from that you developed an acronym that I think would be very beneficial for our listeners to hear. It ties into some of what we talked about on this episode and maybe some topics that we can go into a little bit more on the next episode. Also on the next episode we can talk a little bit more about your personal journey with Parkinson's in terms of diagnosis, treatment, symptoms, that sort of thing - just for our listeners better understand where you're coming from because each person's path is different.

Chad: [00:45:47] But until we kick off that next episode I want to thank you for joining us today. And thanks everyone for listening in and will catch you on the next one.

John: [00:45:58] Thank you very much.