Welcome to Living Well with MS Coffee Break #21, where we are pleased to welcome Julie Pankhurst as our guest!

 

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix 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 always welcome by emailing [email protected]. We hope you enjoy this episode’s conversation with Julie, coming to you straight from Surrey, England.

 

Julie’s Professional Bio (in her own words):

 

I trained to be a software engineer straight out of school in the mid 80s. There weren’t many female engineers at that time, which appealed to me a lot as at age 18, I wanted to prove that I was just as good as any man out there! This perhaps stemmed from the friendly competitive nature between my brother and me (a friendly rivalry that still exists today!)

 

In 1999, while pregnant with my first of two daughters, I used a website called phonenumbers.net and literally over a weekend I was able to track down my grandfather, who had left his wife and child (my father) in the 1940s to set up home in Denmark.  This was the first time that I recognized the enormous power of the Internet. In the 1990s it seemed that everyone was looking for the next big Dotcom idea. While many people were putting their shop online, I sought ideas that could appeal to an even wider range of people. This was when I had the thought that everyone in the UK went to school and might like to know what had happened to their old primary school friends, just like I did in the case of a friend who had left London to live in Edinburgh when she was 10. This was the simple idea behind FriendsReunited, which was set up in 2000: a UK website through which people could easily track down their old school chums by searching for the year group within their school. 

 

My husband and I sold the company in 2005 and since then have taken great delight in being parents, philanthropists, and travelling.

 

Julie’s MS Bio (in her own words):

 

Over the last seven years or so I’d seen my GP once a year with issues that were niggling me: memory problems, pins and needles in my feet, incontinence, balance, and walking issues, etc. These were all dismissed as nothing significant. My memory problems concerned me greatly but when I suggested that I wanted to pay for a full health check I was told not to waste my money. A year later, on Valentine’s Day 2019, my husband and I each had a full health checkup which included brain MRIs. The doctor first thought my symptoms were due to being peri-menopausal until she saw the results from the brain MRI. This is when it was pointed out to me that I had lesions in my brain which could be MS.

I visited a neurologist who diagnosed me with primary progressive MS. My world fell apart. All the dreams that I had to travel the world once our daughters left school disappeared. In June 2019 a friend mentioned the OMS program. On researching further, I learned that there was going to be an OMS retreat the next month. I signed up straight away. I did not know anyone with MS and went to this retreat feeling very alone and scared of seeing how my future was going to be. I left the retreat having made many supportive friends and incredibly positive about my future. OMS gave me the tools to be proactive daily rather than simply seeing a neurologist just once a year.

 

In November 2019, an agonizingly long time after my first diagnosis, I got to meet a NHS neurologist who almost immediately said that she did not believe I had primary progressive MS but instead she thought it was relapsing remitting MS.  

 

I still am not sure what type of MS I have but whatever it is I am hopeful that by following the OMS lifestyle and having Ocrevus infusions I can stop it in its tracks!

 

Questions:

 

• Julie, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and today you’re in the hot seat. Can you tell us a little about your day-to-day life?
• When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it?
• At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
• I understand you used to be a vegetarian and then a pescatarian pre-OMS for over 15 years. Did that help you adjust to the OMS diet?
• You also have quite an interesting daily fitness regimen. Tell us more about Zoom yoga.
• What are some of the challenges you’ve faced at first in adopting the OMS program? How did you overcome them?
• When did you first start to see any kind of positive indicators in following OMS guidelines? What were these?
• In looking at your professional past, you and your husband started a company in the early days of the Internet boom, which you then sold in 2005 allowing you to focus much of your time on philanthropy. In full disclosure, your charitable trust is one of the supporters of this podcast, for which we’re very grateful. Why is philanthropy so important to you? What kind of impact would you like to make in the world?
• Why was it important for you to offer philanthropic support to OMS, and what advice would you give to others about supporting OMS?
• I learned about an interesting hobby you have – exploring family ancestry. In fact, your ancestry was indirectly responsible for the successful Internet company you and your husband launched. Can you share a little more about your genealogical bug?
• Back to the topic of MS, something quite topical these days is the question of people with MS and the need to get vaccinated. You’ve been vaccinated but the DMD you’re on has had a strange effect on your antibodies. Can you speak to that and share your thoughts on what it might mean to our audience?
• Julie, we are ever so grateful for you being on Living Well with MS Coffee Break and allowing our community to get to know one of its own a little better. One last question before you go, and it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?

 

Interesting Factoids About Julie

 

• Julie loves photography, and she intends to focus (pun intended) on it more in the future. 
• Julie is passionate about researching her family ancestry through a website she created, genesreunited. Through the site, she has been in contact with her father’s half-sister, who never knew she and her brother even existed!
• Julie keeps fit physically and mentally through daily Zoom yoga sessions.
• Julie and her husband are active philanthropists (including support provided to this podcast through The Happy Charitable Trust). Two of her other favorite charities to support are Plan International and Kiva, as their focus is to empower people in less economically-developed countries. Through Plan International UK, Julie and her husband have sponsored children and helped to build several schools around the world and have been privileged to visit them, too.

 

Julie’s Links:

 

• Follow Julie on Twitter
• Check out other Twitter feeds Julie loves: Aaron Boster, Dr. Brandon Beaber, and Prof. Gavin Giovannoni
• Julie loves the yoga website Taming the Walrus, run by OMS facilitator Veronique Gauthier-Simmons
• Julie gets great health tips from Chatterjee

 

Coming up on our next episode:

 

Tune in on September 8, 2021, for the next episode of Living Well with MS, where Geoff sits down with Dr. Michael Kornberg, an Assistant Professor of Neurology at the world-renowned Johns Hopkins University in Baltimore, Maryland. Dr. Kornberg is on the forefront of scientific research in MS, and he’ll share some of his insights into what’s on the research horizon for today and beyond.

 

Don’t miss out:

 

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing [email protected].