Fums: Giving Multiple Sclerosis The Finger

This episode is the fifth part of our international series where Kathy talks to MS’ers from around the world, to see how their diagnosis and treatment experiences differ from in the U.S.Today's guest is Col Chandler,a surfer, artist, entrepreneur and energetic MS Ambassador from Queensland, Australia, who was diagnosed in 2014. Col is relentlessly positive, seeing his diagnosis with Primary Progressive MS as an opportunity for change, not necessarily for diminishment.Topics covered include:Col's initial symptoms and eventual diagnosis with Primary Progressive MSThe support he received in hospital post-diagnosis in both Private and Public health schemesThe importance of exercise and Zen meditationThe changes to Col's life goals following his diagnosisCol's decision to step away from his own business in the technology sector to concentrate on his artResources mentioned in this episode (clickable links):Col's website, including his artwork and blogA Facebook page for Col's artworkCo

This episode is the fourth installment in our international series where Kathy talks to MS’ers from around the world, to see how their diagnosis and treatment experiences differ from in the U.S.Today's guest is Dave Head, a writer and patient advocate from Calgary in the Canadian province of Alberta. Canada not only has the second highest rate of MS globally, it also has the highest rate per capita in the world.Topics covered include:Dave's initial symptoms and diagnosis with MSSupport which was available for both Dave and his fiancée (now wife)Socialized/Federal medicine versus employment-provided benefits for Alberta residents with chronic illnesses, including Assured Income for the Severely Handicapped (AISH)The cost of health care and MS medication in CanadaBenefits and support available to Dave following his diagnosis with a number of additional immune system conditionsResources mentioned in this episode (clickable links):Dave's blogDave on TwitterDave's profile on InstagramDave on Fa

This episode is the third installment of our international series where Kathy talks to MS’ers from around the world, to see how their diagnosis and treatment experiences differ from our own.Today's guest is Katrine Bonde, a university student from Aarhus in Denmark. Denmark has one of the highest rates of Multiple Sclerosis in the world (only San Marino and Canada have a higher prevalence).Now aged 24, Katrine was diagnosed with MS in June 2014. Topics covered include:Katrine's diagnosis and initial symptomsAvailability and cost of care and treatment in Denmark, including DMTs and ancillary treatmentsWorkers' rights, protection and sick-pay in DenmarkDanish protocol for MS relapsesAvailability of medical marijuana in DenmarkHow to say FUMS in Danish! Resources mentioned in this episode (clickable links):Parts  one and  two of the international podcast seriesThe Visit Aarhus websiteThe Danish Multiple Sclerosis Center websiteIf, like Katrine, you would like to link up with other MSers, Shift.MS

This episode is the second of a series where Kathy talks to MSers from around the world about their diagnosis and treatment experiences, to see how they differ from our own.Kathy's guest today is Robert Joyce, who lives in a beautiful part of the world, Connemara in Ireland. Now aged 50, Robert was diagnosed with MS while he was living and working in England at the age of 23. Although his fatigue meant that he couldn't continue working at the same rate, over the years he has owned several businesses, operated as a business consultant, and was the head of a sporting organisation in Ireland.However, following a minor car accident his MS, which had been in remission for nearly a decade, returned and since then his life has to be lived in 30-minute blocksTopics covered include:Robert's story of diagnosis in England, and subsequent treatment in IrelandHis experience of working with a chronic illness in Ireland, USA, UK, Norway, Spain, Turkey and SwitzerlandThe accident which bought his MS out of rem

This episode is the first in a series where Kathy talks to MSers from around the world about their diagnosis and treatment experiences, to see how they differ from our own.The first guest in the series is Steve Woodward, who lives in England. He and Kathy had a lot of fun recording this, even if some parts were proof that the US and the UK are still "two nations divided by a common language"!Topics covered include:Steve's diagnosis storyHis experience of treatment through the UK National Health Service or NHSHow the NHS is funded and what it means for people with MSSocial security benefits and working with a chronic condition in the UK Resources mentioned in this episode (clickable links):Steve's article about the  UK National Health ServiceSteve's blog It's a Shit BusinessAll of his articles on MultipleSclerosis.netSteve's blogs about applying for Personal Independence Payment (PIP) -  part one and  part twoSteve on TwitterAn explanation of the term "Heath Robinson&quo

Our guest today on The FUMS Podcast Show is Stephen Camp, the President and Founder of Avior Nutritionals. Avior Nutritionals is the company behind Myetin, which has been mentioned previously both on the FUMSnow blog and on the podcast. Myetin is an oral supplement which can help people experiencing nerve damage, so it is obviously an exciting option for people with MS. It works to support the body’s nutritional deficiencies at a cellular level and is the only product that has both NAD+ and Biotin as active ingredients. Here comes the science bit! Biotin is a water-soluble B vitamin, which is involved in a wide range of metabolic processes, primarily related to the utilization of fats, carbohydrates, and amino acids. NAD+,or nicotinamide adenine dinucleotide, is a coenzyme found in all living cells, and it's required for the fundamental biological processes that make life possible. Topics covered include: How Myetin can support and strengthen the body at a cellular level What the benefits are for people

Today’s guest on the FUMS Podcast is M’Kayl Lewis, Vice President of Member Services at Pack Health.Pack Health is a groundbreaking digital health coaching platform for chronic disease management, which partners patients with their own personal health advisor. Through weekly coaching sessions, as well as personalized follow-ups online, over the phone and via text, Pack Health aims to enable anyone who has or is at risk for a chronic condition to live their healthiest, happiest life.Best of all, Pack Health's services are provided FREE OF CHARGE to its members. Even better, M’Kayl has 80 programs available to share with FUMSers today!Topics covered include:The chronic conditions Pack Health works with, including MSThe Pack Health model of patient support and empowermentThe type of positive results which patient members can expect to achieveHow to take advantage of the 80 programs available to FUMS Podcast listenersResources mentioned in this episode (clickable links):Pack Health websitePack Health special

Today’s guest on the FUMS Podcast is Dr. Karin Hehenberger. After being diagnosed with type 1 diabetes at a young age, Karin has since gone on to dedicate her life to helping others impacted by chronic disease.She eventually created Lyfebulb, an innovative patient-empowerment platform whose mission is to reduce the burden of chronic disease through the power of the patient - an idea that all of us in the FUMS nation can get behind!Most excitingly, Karin talks about the forthcoming MS Innovation Challenge, which looks to support patient entrepreneurs whose companies are developing solutions which address needs currently unmet in MS.Topics covered include:Karin's life with chronic disease and her decision to go into medicineLyfeulb's mission and aimsThe partnership between Lyfebulb and pharmaceutical company Celegen which led to the MS Innovation Challenge- and how YOU could get involved!… and so much more!Resources mentioned in this episode (clickable links):Lyfebulb websiteAddressing Unmet Needs in

Today’s guest on the FUMS Podcast Show is Linda Elsegood, founder of the LDN Research Trust. After her diagnosis and rapid decline pushed her to the very edge, she began hearing about Naltrexone (Nalorex), a drug used to treat addiction to opiate drugs such as heroin or morphine as well as alcoholism.Linda found that low doses of this inexpensive drug might help the symptoms of people with a wide range of autoimmune conditions, including MS. She started taking the drug and found that it made a huge difference to her MS. She also learned that it was very difficult to get a prescription for LDN.Since then she has dedicated herself to spreading the word about LDN, setting up the LDN Research Trust in 2004, and helping people around the world find an LDN prescribing doctor.Topics covered include:Linda's diagnosis and her struggle to get a prescription for LDNThe amazing results she got after a short time taking the drugHer campaign to increase access to LDN and the formation of the LDN Research TrustThe posi

Our guest today is Tamara Sellman. Although Tamara has Multiple Sclerosis, she is also a medical board-certified sleep technologist and a medical board-certified sleep educator. And it's her professional life which is the main focus of this fascinating conversation. Topics covered include: The fact that, although people with MS are likely to develop sleep disorders, it's not always the fault of MS! How Tamara's own sleep disorder eventually led to her MS diagnosis What sleep does and why it's so important - and not just for people with MS The different stages of sleep and how much we need The cleaning crew in our brains! Support which is available through Tamara's website SleepyHeadCentral.com and elsewhere … and so much more!  Resources mentioned in this episode (clickable links): Beam n Read hands-free travel & reading light Swannies light filtering glasses Twitter: https://twitter.com/SleepyHeadCtrl Facebook: https://www.facebook.com/sleepyheadcentral/ LinkedIn: https://www.lin

Our guest today is Meg Lewellyn of BBHwithMS.com – which stands for Boots, Boobs and Hair with Multiple Sclerosis.In a frank and funny conversation with Kathy, Meg covers subjects including being open with her three kids about her MS and how she is now managing her symptoms with marijuana.In this episode we discuss:Meg's MS diagnosis storyWhy she chose to be up front with her three kids about her MS right off the batWhat made her write about her experiences in her book, "Segway Into My New Life"Her history with various DMTs and why she is now managing her symptoms with a mixture of diet, exercise and medical marijuanaMeg's Segway, MojoTurning off her internal critic with the help of her husband… and much more!Resources mentioned in this episode (clickable links):BBHwithMS.comSegway Into My New Life: A Story Of Diagnosis by Meg Lewellyn (Amazon link)Meg on TwitterMeg on Instagram**Today’s episode is brought to you by: Patients Getting Paid – a new course being developed by FUMS – to help pa

In today’s episode, we’re welcoming back Erin Clayton! A fellow MS’er who was featured back in 2015 on Episode 6. From getting her Non-profit Management Certification to raising funds for MS research, she has now decided to focus all of her time and energy into being a stay-at-home mom for her little boy, Parker. Today we’re talking about her transformation and her journey into living a more holistic lifestyle. Erin has made major changes in her life and now treats her MS purely holistically, with great success for herself and her family. Today she shares how YOU can do it too! In this episode we discuss: Erin’s diet transition to eating more organic food Limiting your sugar, gluten, dairy, and soy The Wahl’s Protocol Limit buying and consuming goods in boxes and cans The best way to store your leftover food Erin’s advice on a healthier home environment Water source: Filtered water vs. Tap water BPA free bottles and using less plastic cups or plastic bottles Erin’s MS meds Natural personal care product recomm

My first returning guest, Caroline Craven a.k.a the Girl with MS (from the website girlwithms.com), is back to talk about the wonderful benefits we can get from vitamins and supplements. Caroline is a motivational speaker, freelance writer and has won Best MS Blog several years in a row. She’s also a life coach, and – oh yeah, she has MS. She has toured the country promoting healthier living for MS patients through stress management, healthy eating, and a positive attitude. Now, she’s our repeat contributor for tools, tips, and resources she finds along the way. In this episode we talk about various vitamins and supplements: Vitamin D is critical for us. That’s why it’s very important to have an adequate amount of this nutrient from the food we eat. Sun exposure is also important as our skin produces large amounts of vitamin D when exposed to the sun. Sunshine exposure is necessary for better sleep and to get our serotonin going. Gingko Biloba Good for fatigue and helps in improving cognitive function. The re

Lene Andersen is a writer, health and disability advocate, photographer and chronic illness navigator who has had rheumatoid arthritis since she was four years old. She is the author of the book “Chronic Christmas: Surviving the Holidays With a Chronic Illness” and that’s exactly what we’re talking to her about today! She is extremely grateful to be given a second chance in life. Despite her illness, she feels the need to honor it and decided to help other people dealing with chronic illnesses as well as their family and friends through her books. In this episode, Lene emphasizes the importance of letting go of the perfectionist mindset. If not, you’ll lose the joy of Christmas – being with people you love, chilling and enjoying the moment. Learn to have a good time and enjoy yourself as you listen to today’s episode of FUMS! Enjoy and Happy Holidays! In this episode we discuss: The amazing book Chronic Christmas by Lene Anderson How she pursued her lifelong dream of becoming a writer What made her decide to

Today’s episode is a special one. The holiday season is kicking off and it could really be hectic and stressful for anyone, but especially for we MS’ers. I just want to take a minute to remind you to take a moment for yourself. As people with MS, we have to be extremely mindful of our stress load. The holiday season should be a time for relaxation and celebrating with family, friends and loved ones. Holidays are meant to be enjoyed, not stressed over. And so I’m here to remind you to take a deep breath, let go of the things that stress you out, and come up with a plan to lessen your load. Whatever that is, decide right now that you’re going to do everything in your power to reduce the holiday stress. In this episode, I share helpful tips and suggestions you can utilize to better enjoy the holiday season! Wishing you all a wonderful and (hopefully) healthy, happy holiday season! In this episode we discuss: Helpful tips and suggestions to help you in preparation for the holiday season. How to lessen your stress

Today’s episode is an interview with Jen Horenjeff a patient advocate, Ph.D. and the founder of Savvy Cooperative, a platform that connects patients and others in healthcare, providing the industry with real patient input and experiences to help improve products and services for a better patient experience. And it compensates those patients for that valuable information. In this episode, Jen explains how being a patient and a professional opened the door for her to connect the patient experiences and knowledge to create a platform to improve the work of medical professionals and provide better patient experience through research, products, and services. She also shares the value of being in a cooperative. It’s all about being valued and understood, knowing that your perspective matters. Every patient has something very unique to offer and professionals should be aware of that. The beauty of being in coop is that it’s a union that’s more powerful the more members join and engage in it. In this episode we discu

This episode features an interview with Mary Dale Walters, the Senior Vice President of Strategic Communications at Allsup - a company specializing in providing disability services. For over 30 years, the company has successfully helped more than 300,000 individuals receive their Social Security Disability benefits. In this episode, she will walk us through a large number of resources and relevant information necessary to have a clearer understanding of the application process for Disability Insurance and other benefits. She advises us to be specific in addressing our needs when applying for disability benefits. "It's not that you have a disability, it's that you can't work because of your disability."   In this episode we discuss: What is Social Security Disability Insurance? Why is it important to apply? Private Disability Insurance vs. Government Disability Insurances Long-term vs. Short-term Disability Insurance How to qualify for Disability Insurance Does having Multiple Sclerosi

Brie Reynolds, a Senior Career Specialist at FlexJobs, helps people find the jobs that will best accommodate their chronic condition life challenges. FlexJobs is the leading online service for professionals seeking remote, flexible schedule, part-time, and freelance jobs. Imagine not having to take time off of work for your doctor’s appointment, or not having to call in sick when your not feeling well. That’s what flexible jobs are all about! Flexjobs offers ancillary services as well as jobs boards for job seekers. There’s 1-on-1 coaching, help with resumes, webinars with featured companies, and a blog with tips and tricks to help you get the job you want and need. **SPECIAL OFFER** Use the code FUMS when subscribing to a membership at FlexJobs to get 30% off of any subscription level! In this episode we discuss: How FlexJobs works The positions offered with benefits and without benefits. Advice for chronically ill folks on how to handle sharing their condition with potential employers. Perks of having a par

Being able to brainstorm and solve the symptoms people are having and how to help them in their daily lives is what Gretchen Hawley loves most about her job. Even with the uncertainty of how the disease manifests itself with different people. Gretchen is a Doctor of Physical Therapy who specializes in Multiple Sclerosis. It has become her advocacy to help each of her patients reach their goals in as many ways as she can. It’s never boring to do things when your heart is in the right place. At the end of this episode, Dr. Hawley tells us about her plans on launching a virtual PT program. She walks us through how she started a Youtube Channel and an Instagram account to better reach her patients from different locations. She created these in order to teach and encourage people that they can exercise in the comfort of their homes. In this episode we discuss: Her journey towards becoming a Certified MS Specialist. What made her interested in working with people with MS. General Nutrition and Cognitive Therapy. Dr

Going on a trip, be it on a cruise ship, train or an airplane, can be a daunting task for someone who has MS. You have to worry about mobility issues, access to bathrooms, restaurants and hotel rooms and access to medical care. Tarita Davenock loves traveling and exploring the world, and was diagnosed with multiple sclerosis during the prime years of her life. As her MS progressed, she started traveling with a wheelchair and saw a certain need in the market for people like her and filled it with “Travel for All”! Tarita is the owner and founder of Travel for All, a travel agency specializing in accessible travel and helping people who are physically challenged and need special care and services. In this episode, she shares with us all the possibilities that exist to still go to different places and experience different things despite MS. As this episode ends, Tarita encourages us to spread our wings as we explore the beautiful places on this earth. Yes, you have MS but it shouldn’t hinder you as there are peo