Overcoming Multiple Sclerosis: Member Casper opens up about his MS journey

Posted September 19th, 2016 by

We recently got to know Casper (casper80), a member of the MS community who’s been living with his condition for nearly a decade. Along with tracking his health on PatientsLikeMe, Casper follows the “Overcoming Multiple Sclerosis Recovery Program” (OMS), founded by Professor George Jelinek of the University of Melbourne over 15 years ago.

The program focuses on lifestyle changes — things like diet, exercise, and meditation — that can help MS patients feel better and healthier in their day-to-day lives. We wanted to get Casper’s thoughts on what OMS is all about, and whether it’s helped him manage his health. Below, see what he has to say about his journey with MS (and OMS) and his experience on PatientsLikeMe: “It ensures I do not feel alone.”  

Tell us a little bit about yourself. What was life like before your diagnosis with MS? 

Life was fun, I had lots of friends and was enjoying life, no worries! I mostly enjoyed walking in the countryside, cooking and eating with friends. I live in the UK, and my family are all in Sweden (I am half English, half Swedish).

We hear from many PatientsLikeMe members living with MS that finding a diagnosis can sometimes be challenging. What was your MS diagnosis experience like? 

In early 2006, a random tingling in my legs appeared as I was waiting to cross a road, and did not go away. Occasionally, I would fall over when walking, or accidentally go to the toilet in my pants. I was very confused about what was happening to me. After a few months, my NHS doctor referred me to a consultant who said it could be the first sign of MS. He said I could get tested, but if it was MS there is no treatment. So I chose to not be tested.

Since MS, how has life changed? How have you, as some members say, adjusted to your “new normal”?  

It has taken some time, but I have adjusted to my “new normal.” My wife, family and friends also adjust when I am with them. I make sure I plan any activities in advance, pack a change of clothes just in case, go to the loo before I go out, plan routes, pack my own food. I have occasional challenges, but I am now happy again.

On your PatientsLikeMe profile, you mention that for the past three years you’ve been following a program called “Overcoming Multiple Sclerosis”(OMS), founded by Professor George Jelinek, Head of the Neuroepidemiology Unit (NEU) within the Melbourne School of Population and Global Health at The University of Melbourne. How does this program work? How has it changed the way you manage your MS? 

The OMS program has three core parts. First, I adjusted my diet to reduce my daily saturated fat consumption to 10g or less. It’s a vegan, whole food diet plus fish and Vitamin D.  I also exercise for half an hour, five times a week. And finally, I meditate for 30 minutes every day. I started slowly with a few minutes a day, gradually building up to 30. Now I generally do my 30 minutes when I need to rest, or during my train commute to work. Mindful meditation now goes quickly, it resets my body and I feel great after!

What can you do now that you couldn’t do before? What are some challenges that remain?

Mental – I can smile honestly. A few years ago I was scared and confused about what was happening …my slow but steady loss of ability and independence. I lost hope and found myself in a dark place. Nowadays, since following OMS, I can enjoy life, be optimistic and look forward to the future. I can make friends and family happy. People often tell me they are inspired by my positivity.

Challenges – occasionally I am still overwhelmed by MS and how it can affect everything the body and brain does, but I have found this usually means I have not had enough sleep!

Physical – I can walk further, more strongly. From 2006-2014 my walking slowly deteriorated until I lost confidence, was constantly using a walking stick and avoided going out. OMS gave me the confidence to exercise, build strength and try walking without my walking stick. Astonishingly, it eventually worked! I still use my walking stick sometimes, and if I have a day of exceptional long walking or physical effort I may use a wheelchair the next day (but these are very rare occasions). On a good day I will fold the walking stick and put in my rucksack. On a really good day I will leave home without my walking stick at all!

Challenges – I definitely still have physical limitations. I am sometimes frustrated that I struggle to carry a shopping bag and cannot run, but I keep practicing … it will come one day!

Toilet – I have more control and confidence than I have had for years. That is in part from experience and better management, but fundamentally things work better than they used to.

Challenges – Accidents can happen if I have not taken precautions, but this is very rare.

Neuropathic pain – 18 months ago I would wake up every night, literally screaming from pain in my left arm. My neuro prescribed Amitriptylene , which stopped this neuropathic pain. OMS has given me the confidence to carefully reduce the dose. I have not taken any for 13 months now and have no pain.

Brain fog – My brain is generally clear, and I have more confidence in it.

Challenges – Remembering to take things slow.

Diet – I am enjoying varied, delicious meals every day. My ability to taste is much better since following OMS…I can even recognize the difference between rice cakes!

Challenges – going to a restaurant used to be a challenge, but I have found restaurant staff and chefs are very happy to help if I ask them to make changes to the meals to be OMS-friendly.

Friends – I have made loads of friends who have MS through OMS. We are all helping each other. In a funny way, since finding OMS, I am actually happy because of MS.

Challenges – Time!

It looks like you’ve reported taking Baclofen on your PatientsLikeMe profile. How has the combination of taking a prescribed treatment along with following the Overcoming MS program holistically impacted your health outcomes?

I have had Secondary Progressive MS (SPMS) since the beginning of my MS nearly 10 years ago. There is no medicine for SPMS, just Baclofen to reduce muscle spasms.

My neuro told me to take Baclofen as/when I need, so I don’t have a set amount. I am quite relaxed with it but try to take as little as possible — these days I typically take 10-40mg/day. I went through a phase of not wanting to take Baclofen, but that simply resulted in me shaking more, so it was visibly apparent that I need it!

18 months ago I took Amitriptylene to reduce neuropathic pain, which worked and it was amazing, but I reduced that and eventually stopped completely soon after I went on an OMS retreat.

OMS has helped me understand that medicine is fantastic when it is needed, but you don’t necessarily have to use the medicine forever. (Of course discuss with your doctor).

OMS has given me a way to help myself, without waiting for SPMS medicine*. So whilst I am ready to accept medicine, I do not rely on it. Baclofen reduces my spasms — an important, but limited function. OMS diet, exercise and meditation makes me feel healthy, proactive and positive and enjoy life. Another great thing about OMS is that it also gives my family and friends hope, because they can see me being healthy and happy. I feel like I can overcome the challenges of MS!

*I am actually also on the MS-SMART trial, taking a small dose of medicine/placebo.

Other than this program, what else do you do to manage your MS? How has regularly tracking your symptoms on PatientsLikeMe helped? 

Tracking my symptoms on PatientsLikeMe has been great to see how I have improved over time. It was great when I showed my wife my PatientsLikeMe graphs and she saw my entries were honest (she remembers the bad days I had in the past, so she knew I was completing it truthfully). She was really happy to see my improvement.

The PatientsLikeMe network is fantastic, and I have been lucky to receive some good advice from others in the network. Occasionally I am even able to help with someone else’s question. It feels so nice when someone reads my post and ‘likes’ them. MS can be lonely, but the PatientsLikeMe network connects me with others who know MS from the inside — it ensures I do not feel alone.

What’s your best piece of advice for other MS patients? 

Have hope. Follow OMS —it is not an instant fix but the worst that can happen from OMS is that you eat a healthy diet and make friends!

 

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One Comment

  1. I am also on Patientslikeme, and posted also on the OMS lifestyle changes.
    I am happy to read that I am not alone out there. I feel inspired. It feels similar to my experiences.

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