My Multiple Sclerosis Story | Traveling with MS | Living my Best Life

if you're just finding us we are travel bloggers on a journey around the world we get a lot of questions and and frankly some judgment around why we aren't slow traveling staying a month at a time in each place people kind of insinuate that we're doing it all wrong you know we usually spend about one week in each location we've said before that we do have a reason for traveling fast at this time and since we've never talked about our motivation we thought today might help you better understand our decision I consider myself very healthy right now I might have 30 years of good travel ahead maybe it's just two days we just don't know but our plan to travel fast and take in as much of the world as we can while I am healthy has everything to do with the multiple sclerosis diagnosis I received about 25 years ago while it's not a new diagnosis it's been hanging over my head for decades it's changed who I am today we're going to tell my story and how it impacts our life our Outlook and yes our travel plans it's not a sad story but one of Hope and making everyday count and let me say the ad Revenue we get from this video we will donate it all to the National Multiple Sclerosis Society it's an organization that funds research support groups and other needs Ms patients have worldwide someone is diagnosed with this disease every 5 minutes we've placed a link in the description if you'd like to donate directly we're J and Bev and we are the retirement Travelers when I was in my late 30s I developed two symptoms my left leg felt like it was asleep for about 8 weeks I also had an electrical Sensation that seemed to shoot down my legs anytime I bent my head over at first I saw the local chiropractor and after a few weeks he suggested that I go see a neurologist to rule out multiple SC osis I saw one who told me that he thought that's what I had I sought a second opinion and this time I traveled to the Houston Medical Center where I saw one of the world's leading neurologists after an MRI he confirmed the devastating news he diagnosed me with relapse remitting Ms this basically means it is likely to come and go it's a diagnosis that most firsttime Ms patients receive because there's no way to predict how a patient will Faire going forward for most relapse remitting patients they have a flare up that may last for days or weeks and then go away only to have another return at a later time these can leave a person with a disability the alarming part is that patients never know when or to what extent their lives will change when they do have the next flare up if you aren't familiar with the disease MS is an autoimmune disease that affects the central nervous system nerve fibers have a covering called a milin sheath much like a plastic covering that surrounds electrical wiring for some reason the immune system of people with Ms attacks this sheath and destroys the covering leaving damage to the nerve like many autoimmune diseases the immune system attacks healthy cells just like it does the bad ones like viruses or bacteria doctors still don't know what causes Ms what happened to me was the Sleepy feeling that I was having in my leg wasn't that at all my leg was fine but the message my brain was getting to and from my leg was muddled as the leg sent messages to my brain or vice versa it had to pass through this damaged nerve and my brain got mixed up signals my leg was fine but it felt asleep to me I had no Mobility problems just sensory people with Ms are left with what are called lesions these are tiny scars that can be seen on an MRI in the brain and the spinal cord sometimes people have many of these and sometimes just a few now in Bev's case she has a few in both places yeah after my you know that initial time of my first diagnosis my symptoms have receded and I've done very well much better than I prepared myself for my disease has not progressed and my symptoms haven't gotten worse I still have symptoms mostly tingling in my legs my hands and sometimes on my face sometimes my legs feel heavy or they feel like I have to make a you know a more concerted effort to take a step it's a weird sensation and for me I notice it when I walk especially in cities that don't have even side walks or where there are a lot of cobblestones I worry about falling all the time my problems become more prominent and pronounced when we're in a hot environment we try to avoid traveling to high temperature locations but we've been unlucky a few times every day I live with the knowledge that things might get worse for me I don't know what tomorrow will bring we've said over and over in our videos that we wanted to travel while we were young and healthy and this is what we meant not a day goes by that I am not thankful that my legs work and I am able to walk everywhere sometimes 10 miles a day you won't hear me whining that we are traveling too fast from my perspective we can't go far enough or take in enough making this big journey is more important than the minor nuisance of packing my things every week a week here and a week there is a good pace for us to cover a wide swath of the world while I can it's funny how we can let the little things get to us when there are people in the world with real problems some people can't walk and I don't take my ability for granted it's humbling to remember so living your life to the fullest means something to me disease are not you shouldn't take your good health for granted either you know everyone has something that they must deal with our moms while healthy certainly had a tough road when they lost our dads and many people have conditions that are much worse than bevs so let me say we know life can be hard and While others might not know the pain that you're dealing with you know so hang in there and do the best you can you know sometimes there's rain and sometimes there's rainbows but there's always people in the world that care and are willing to help you we hope that sharing our story and our example of TR will give some young person hope that life isn't over with this diagnosis there are many examples of people who have a rough road but there are many more that have a good life and keep their symptoms under control I'm just one example of someone who managed well but there are many others that diagnosis felt like a death sentence back in the day I was very scared it's been far from what I imagined it would be and for that I am thankful if you're trying to figure out your life while living with this disease you know please reach out and join the National Multiple Sclerosis Society or an equivalent in your home country they have chapters around the country with community members who are there to walk along beside you they are there to help you with support groups and funding for the needs you might have if you feel compelled to donate to this worthy cause please check out the link in our description they can use all the help they can get the symptoms started around 2011 going through different doctors a lot of misdiagnosis I struggle with trimmers double vision brain fog and chronic pain I picture myself being in this place and everything being out of reach the MS is getting worse and I'm still just stuck in this little body primary progressive MS it's comparable to a house where things aren't working as they should it's not something you can sleep off you wake up it's still there when you hear about a cure it brings that hope back would mean to my kids that they get their mom back and people would be saying hey remember Ms do you know what that is if no one would have to ever experience this it would just change the [Music] world

Channel: Retirement Travelers

Views: 16,608

Keywords: multiple sclerosis, traveling with autoimmune disease, how to travel with ms, vacationing with ms, living a long life with ms, how I travel with ms, what its like to travel with multiple sclerosis, living life to the fullest with ms, good outcome with ms, living a full life with multiple sclerosis, telling my ms story, ms and travel, bev retirement travelers ms story, mymsmoment, Living my best life with ms, good ms stories, Best life with ms, traveling with ms

Id: L3Rg9wDHO9c

Length: 8min 34sec (514 seconds)

Published: Sat Oct 07 2023