MS: Busting the Myths
May 9, 2022 | Advocacy, Life with MS, Media, My Story
Matthew was living in Florida in 2004, a very stressful time with numerous hurricanes battering the area. He had also just been diagnosed with Multiple Sclerosis by a Neurologist. At 37 years old he was learning how to inject himself daily with Copaxone, for the rest of his life.
During 2011 and 2012, Matthew tried various medications, but they caused far too many side effects, which he couldn’t deal with whilst working full time. He carried on with life and did his best to battle through. After many failed attempts using disease modifying treatments, Matthew started to modify his diet, exercise and his daily routine which all helped, but not enough.
In 2013, when he first learnt of aHSCT, he travelled to Chicago to try and get into an programme there but was unsuccessful as the procedure was not approved for MS treatment. He then applied to facilities in Russia and Mexico and was thrilled to be granted a place at the Mexico centre.
Matthew’s aHSCT treatment took place in Mexico in 2016. He went to Mexico using a cane, and when he came home he was able to walk without one! He was at the clinic with nine other patients from around the world (six from Norway, one from England, and two other Americans) and they were all going through the journey together.
“I left here I was walking with the help of a cane, and came back not needing it. My energy levels are high. I want everyone struggling with this disease to know about this and that there is hope.”
Matthew’s story, published in the US, can be read here: https://weartv.com/news/local/life-changing-procedure-helps-man-fulfill-dream and https://www.waltonsun.com/story/news/2016/03/01/a-story-about-hope-faith-friends-one-mans-fight-against-ms-and-his-new-hope/32456401007/
Matthew’s main goal is to walk his daughters down the aisle at their weddings; he has now fulfilled that promise to 3 out of his 4 daughters so far.
May 2020 was the start of lockdowns and the lack of contact with other Men with MS was something Matthew wanted to change, so he created a Facebook page called Modified by MS (https://www.facebook.com/modifiedbyms/). Initially the page had 5 or 6 guys, increasing to around 75 when I first spoke with Matthew in February of 2022, but it now has 139 followers many of whom take part in their twice a week video calls with people joining from all over the US, Canada and the UK.
The premise behind the group is to provide emotional support to Men with MS, patient advocacy by sharing their experiences and learning how to be the best person you can with MS. They also have a ‘Tips and Tricks’ discussion point once a month with physical therapy and personal trainers, and they frequently have a MS specialist join in and give their expert opinions. With a whole host of takeaway points, it really has been a well-received and well utilised group. We love that Matthew saw a need and did something about it.
Matthew recommends the resource: https://belongms.onelink.me/luLu/5d70e66c it has a social aspect to it, but leading doctors can answer questions asked by patients and their families, anonymously. There are various professional groups including: neurologists, radiologists, and urologists, who provide prompt, professional, and reliable responses. It really is a great resource for all diagnosed with MS.
Keep up the great work Matthew!
