FUTURES BRIGHT FOR MS COMMUNITY
Multiple Sclerosis is one of the nastiest neurological conditions one can attract and here in Ireland it affects more people per head than any other part of the world. Typically it hits people like me in their prime, between the ages of 20-40 years old, and when it arrives at your doorstep, it changes your life forever.
However over the last ten years, there has been lots of developments in the whole area of research into MS and also billions of dollars of investment in various therapies like the wide ranging disease modifying drugs, that have been proven to prevent relapses up to 30%. Today we understand alot more about the disease, and also worth noting is that some of the top clinicians working in this area are suggesting that in the next fifteen years, we will have the disease worked out. Now that would be something.
On Friday morning I jetted out to Brussels to take part in a European convention that was called to discuss all things MS, including the latest treatments, ways in which patients can manage the disease, the role of technology, and how we can collaborate at a European level to make the lives of people with MS that much better. The majority of the people in attendance included some of the leading European neurologists, the pharmaceutical companies and other healthcare professionals who work in the area of MS. There was in the region of fifteen speakers over the two days, and with regards my own involvement, I was the only MS patient who was invited. My brief was to share with the group my own journey with MS, and also to share any concerns of the questions, or challenges the MS community had. I was able to do this fairly professionally and my presentation was well received which is always nice to hear.
I have spoken at a few high profile MS events in the last few years, however in terms of substance and information, this one exceeded all of my expectations. It was a great opportunity for me to speak to some of the key influencers in Europe on this topic and also ask some pretty direct questions. In general I can tell you that there are lots of new developments and drugs on their way that will hopefully help MS patients deal with their disease much better. However i would also like to share the following information with you;
* Exercise - Many MS patients are still unsure if they should be exercising. They don't know if exercise is beneficial to the disease and often they are getting mixed messages from their healthcare professionals. Well I can categorically tell you that exercise is now being endorsed by the top neurologist in Europe as one way to manage your symptoms and also helping you with your overall wellbeing. Obviously you have to speak with your physio therapist in this regard, but for me I was able to get direct answers on this from the professors who were contributing and it was all very much directed towards encouraging exercise as part of your overall recovery program.
* Vitamin D - over the last couple of years there has been more and more discussion regarding whether MS patients should be taking a Vitamin D supplement. This morning I was able to ask one of the top Neuros a direct question as i was part of the discussion panel. My question was - is neurologists now recommending their patients to take a Vitamin D supplement? The German professor stated that the most up to date research shows that there is nothing detrimental about taking Vitamin D supplement and confirmed that there are now various studies that prove taking Vitamin D can actually help MS patients. I personally have been following Dr George Jelineks advice in this regard and I take 5000iu per day. The professor told me and the group this morning that in Germany they recommend to MS patients to take 20,000u per week. So the bottom line is if you are an MS patient - you should carry out your own research into this, and seriously consider adding Vitamin D to your recovery plan. I would go further and suggest that if you live in the northern hemisphere or where the sun does not get our much, all of us should be supplementing our diets with a Vitamin D capsule. In fact my own children are now taking 1000iu per day to ensure they are not short of this vital vitamin.
* Technology - It was stated at the conference by Dr Gaviin Giovannini that technology and the "Uberization" of this, being how he referred to it as, will absolutely change the way we manage MS and how MS patients manage and live their lives with MS. In the USA and California in particular, many people are booking appointments with their neurologist through the most recent APPS that are now becoming available. This is being pushed hard in the States and is only a matter of time until it gets to Europe, so we must be ready and prepared to embrace this as its going to happen in any case.
* Patients - There was a serious discussion this morning as to who should be the central persons in the provision of healthcare for the patient and more importantly who should be responsible for the care of the patient Should it be the neurologist, the MS nurse, patient him/herself, or GP for example. There was a divided opinion on this, but its an area where I personally have strong views on and shared them with the room. For me its imperative that the patient becomes the key person and has the key responsibility for his/her health. Ultimately for me the buck stops with me. It is me who will decide what amount of effort I will go to in order to fight the illness. In relation to my own journey, it wasn't until 2010 when I started to take control of my health and the way I was approaching my own MS, that my health and wellbeing started to improve. Yes absolutely you need to work with you neurologist, your MS nurse and GP etc, however the ultimate responsibility has to come back to the patient, and many of the key doctors today agreed with me. Food for thought...!!
Although over the last fifteen years there has been significant progress made in the MS world in general, in regards to the primary progressive nature of the disease, very little to no progress has been made at all. However that was until recently. I can exclusively reveal that I was advised last night by one of the top pharmaceutical bosses that very recently a small company in France has produced data that suggests they have found a drug combination that can potentially halt the progressive nature of the disease. More tests are pending but if this is true, then this is ground breaking news for the MS community and will be a game changer that will give great hope to those MS'ers who are affected by the very nasty and difficult primary progressive phase of MS.
So to conclude, I have come back from this event even more optimistic and enthusiastic about the future for the MS community. If you know someone affected by this terrible illness, let them know about this new information and feel free to share this blog.
AGAINST ALL ODDS CHALLENGE UPDATE:
I have 17 weeks to go and am one marathon down. I am on week 13 now of my Ironman training program and still alive. I will be working harder now over the coming weeks to get my body ready for Spain in September. I have a long way to go. I would love it if you could support me here :: www.justgiving.com/conor-devine2
All proceeds going to the MS SOCIETY :)