Robin's MS Journey across USA
I want to share some exciting news with you, I have just been given the go ahead to try set a world record by being the first person to drive a disability scooter from the California coast to Florida coast. This has two very significant benefits to the MS Journey, instead of the trip taking 6 months to complete; I now am going to be taking the shortest route across the country. I am planning on it taking me about 6 weeks, which reduces how much money I need to raise dramatically. Now the expenses will only be about $30000 and the great news is, we have already risen over $4000.
I am planning on setting off in Dec or Jan, which gives me a few extra months to raise the money to cover the trip expenses. I have to ask for your help, we need to build momentum; I need help getting the word out. Instead of it just being me blowing my own horn, I need people like you who see the benefit in bringing awareness to MS and other disabilities and will spread the word with everyone you know. Now I’m not asking for money, even though we would gladly accept it if you could afford it, what I really need is for you to send a letter about what I am about to do. Call your local radio & TV stations, newspapers, magazines etc. I need you to start a fund raising campaign with your local friends or anyone affected directly or indirectly with someone struggling with a disability, I am sure they would love to help.
This journey could become very popular and help a lot of people, but without you and people like you, I’m afraid this MS Journey will just fade away and become a good idea that never happened. Together we have the power to do something amazing and I could really use your help. If you know anyone who could help like a PR person, web designer, publicist, ask them to get involved. I would love to raise money for the NMSS, MSF, MS UK, Wounded Warriors any disabled organization that is helping make a difference. Again, I need help finding a reputable organization to raise money for, so if you know any organization big wigs, get them to contact me.
When I told my wife I wanted to drive my disability scooter across America to help raise awareness for MS, she said I was crazy. She said “we have worked long and hard to be lucky enough to find ourselves in the perfect house, financially secure surrounded by friends and loved ones. Why on earth would any sane person what to embark on a dangerous journey, living out of a suitcase and being away from what seems like a perfect life”. I reminded her, even though we might live in our perfect little bubble now, we had been through many hard times. There are many disabled people struggling to keep their heads above water, and not just financially, our experience would help. After years of failed therapies and treatments or a lifetime of medicine that didn’t cure me, it would have been easy for me to just want to give up. But once you do, the slippery slope we live on, quickly becomes a pit of despair with no end in sight.
My idea is to travel across America meeting as many MS and disabled people as possible so I can share my tried and true strategies on successfully managing of Secondary Progressive MS, but more importantly show them there is hope for us all. You see the only way to change things, is to get involved, not wait for someone healthier, richer or stronger, but for each of us to do everything we can to make this life a better place than it currently is. When I explained it to her like this, how could she do anything but support me on this most courageous quest.
Now, in order for this cross-country journey to be a success many things need to happen, most importantly people need to get involved. Not just by donating money to cover the expenses, but spreading the word to everyone living with, caring for, or affected by someone with a disability. If everyone likes my facebook page https://www.facebook.com/pages/Robins-MS-journey/417425851693498, contacts the local newspaper, TV or radio stations, the news will spread. And the more people that know about what we are planning the more people will be able to help. Perhaps you know someone who works for a MS drug company or a disability scooter manufacture who would like to get involved. You might know a celebrity who would get involved or give a shout out in support. All I know is that everyone can make a difference as long as they try.
If we can help just one-person change their mind and not give up, our idea will be worth it. I can’t think of a more necessary journey, offering someone less fortunately a hand up is what this is all about. I understand we can’t all take time off to drive across America, or make $100 donation but maybe you could afford $10 and to come out and cheer me on along the route? You see no matter how small your part or seemingly insignificant a role you play, together we can make a massive difference, all you have to do is commit to doing something.
Robin has an advanced case of Multiple Sclerosis and have been battling it for 14 years. Two years ago the big moment he'd been dreading for a while happened, he had to stop working and was placed on full disability. Robin has been self employed pretty much his whole working life, so to suddenly not have a new project to work on was just killing him. He slipped into a deep depression, he didn't want to get out of bed and all he seemed to be eating was fast-food, pizza delivery, sweets, soda and other junk much to my chagrin.
The more junk he ate the fatter he became and the fatter he became the more depressed he became, it's obvious at what a terrible cycle he was in. Then when Mathew Mc Conaughey won his Oscar and said in his speech that everyone needed 3 things, something to look forward to, something to chase and someone to look up too, a light bulb turned on in his head. He already had someone to look up to (the lord), He needed something to look forward to, he needed a project. So he started racking his brain, he prayed for guidance and slowly but surely he started piecing together the puzzle of what to do with his life now that it had all changed again. He knew he wanted to do something big, something special that no one had done before and he wanted to do it for someone other than himself.
We believe we need to give back in this world; God had seriously blessed us with so much in this life so far that even now with this terrible disease he feels blessed. “Anyway, enough of that, he decided he was going to drive his disability scooter from San Diego to Miami to raise awareness not just for MS, but for disabled people in general”. So he set out drafting the plan he needed to pull this off, the more thorough he dug the more massive this project became. It turns out that on a regular disability scooter it would take about 6 months to drive across the country from coast t coast. But every time he told me about it I would say he’s crazy and he would never be able to do it, which just made him search harder, at a way to pull it off.
As the idea started to take shape I said he was in no shape health wise to do even the smallest tasks for himself like bathing, dressing, cooking or even things like cutting my food was almost impossible. So we made a deal, if he used the next 12 months to get fit and healthy I would support him 100%. So now he had a new mission, what should he do in the next 12 months that would put him in the best position to be ready for this adventure. After much research he found a few different diets and exercise programs that he believed would work perfectly. It turns out, most of these authors had gotten rid of their own MS symptoms by following the plans in their books and that is what inspired them to write their books in the first place.
The basic premise of these diets are from Dr. Terry Wahls Protocol – no gluten, no dairy, no sugar, no legumes, no processed foods, no alcohol, no corn, no soda, no grain’s etc. Then he started adding various exercise programs, first he started with some easy stretches, then a basic yoga pose that helped get his blood flowing from his legs to his heart. Then he incorporate Whole Body Vibration (WBV), because it’s low impact and you can get a whole body workout in 10 minutes. Next came aqua therapy, this is brilliant, it seriously works his core and any stretching or weight lifting is made a lot easier because of the water.
Then he added DDP yoga, this is a fantastic yoga program consisting of a beginner series right up to a super advance program. I suppose the question everyone is asking is, is it working? Well the truth is it’s too early to tell yet, it is still early days and we have just over a full year to go before the journey starts, in Sep 2016. This is a very exciting time for all of us and I urge you to embrace this journey, make it your own. Use Robin’s willingness to do the 6 month trip to your advantage. We don’t want to raise money, but you can use us to raise money for your small group, national group as long as it benefits MS or some type of disability it will be encouraged and promoted by us.
All the money donated to this journey that is not used to cover trip expenses and it’s promotion will be donated to MS and disability related charities.
Two years ago I decided to drive my disability scooter from California to Florida. I figured after having Multiple Sclerosis rob me of most of my abilities for the last 20 years, it was time to fight back. So for over the past year, even though I’m confined to a wheelchair, I have been dieting, exercising and fund raising so that I can set off on my cross country journey to raise awareness for MS, people in wheelchairs and disabilities all over the world. I would love it if you liked and followed me on my journey and shared my story with as many other people, https://www.facebook.com/pages/Robins-MS-journey/417425851693498.
In June 2015 I decided to be one of the first people in America to try a brand new drug called Lemtrada. Now that I do not have to give myself daily injections, Lemtrada is a once a year, 5-day infusion that kills your immune system. I can focus my attention on changing my lifestyle, adding the Wahls Protocol diet and increasing my daily exercise program’s. Besides Lemtrada being very dangerous as far as scary side affects go, it is by far the best and most powerful MS drug available on the market today.
Robin’s MS Journey has had its moments over the last few years which have led me to question its necessity because somehow it became more about raising money than helping people. But every time I wanted to throw in the towel I am reminded by the thousands of well wishes and messages from disabled people all over the world telling me how much my story has help or inspired them. So for the third and final time I will move the journey across America on my disability scooter to January 15th 2017.
I am going to spend the next 15 months concentrating on improving my health and minimizing my MS symptoms. Besides Lemtrada killing all the bad stuff (like chemo does), I have a year to rebuild my immune system, fill my body with the foods and nutrients it needs combined with an exercise plan to create a new and hopefully MS symptom free me. Then in April 2016 I will do a 100 mile, 3 day scooter journey ride to raise awareness about my up and coming “Guinness World Record” attempt to drive the furriest distance in a 24-hour period on a disability scooter.
Then in September 2016 I will attempt to beat the world record in Seattle and raise awareness for my, up and coming cross-country journey that will start mid January 2016 when I will drive from the California coast all the way to the Florida coast, in the quickest possible time. Hopefully this time round more people will volunteer to get involved to make this event be as huge as it could be. So if you know of PR people, website developers, TV or Radio personalities or even celebs, point them in our direction.
I also will be looking at finding a couple of organization like the National Multiple Sclerosis Society, Wounded Warriors, Americans with disabilities etc. who I can help raise money for, so that this journey not only increases awareness but helps these much needed charities generate some donations for themselves. Also I am positive with all the publicity we will generate; companies will be chopping at the bit to get involved.
Besides constant updates about me and my journey of getting ready for the trip, I post hundreds of articles each month about diet, exercise, new drugs, helpful hints, recopies etc. to keep you up-to-date and informed with the latest greatest MS news. I don’t get paid by anyone or endorse any particular drug or therapy, I just share the info and let you choose what you want. My theory is to aggressively seek and do whatever I can to beat this disease.
Hello my darling coz, was looking at the start date of your trip, still confirmed for September 2016? We got some little plans up our sleeve (nope sorry can't make the trip to support you on the road) with a little help from your friends xxxx
Robin, you inspire me !! Thank you to your wife for supporting your endeavor too !! I've shared on Feb and emailed a few. I will contribute at some point. You're in my prayers and God bless you on your journey !!!
Praying for you Robin
Thx. Go Go Go. for ms. ppl
Hi Robin thanks i shall think about the fundraising. I shall keep reading your stories. Dont give up ...