Our Easter holidays are very important to us as a family for
a chance to get away from the grind and get some African Sun. We like Morocco
as it ticks lots of boxes for us: Guaranteed decent sun at Easter (25plus), a
short flight from London (3.5 hours), no jet lag (it is on GMT), we can get 5
seats on air miles and you can rent a stunning villa with a pool which comes
with a cook for a very fair price. However, this year’s trip was thrown into
disarray the morning we were about to leave as poor Fran was really not well
she had not slept a wink that night. She has been suffering a bit of late poor
thing with a mixed bag of anxiety and heart palpitations. These things are
always hard to put your finger on but we feel it seemed to be anxiety which
must have built up from a full on 10 years running her own business single
handedly, having 3 lively girls in a short space, having a husband with a
chronic illness and her own fair share of health challenges.
We made a late call for me to fly solo with the girls rather than abandon the trip with the hope that Fran could come out after a week. Thankfully we had persuaded Molly (our new short term nanny) to come with us for a week to help out with the kids. I have done a fair bit of solo parenting over the years but 2 weeks holiday was a new challenge.
The holiday was a bit weird to say the least but fair play to the girls they did super well without their mum. I really struggled the first week as Fran was not in a good way at home but thanks to help from friends and her folks she got much better the second week. As we holiday a lot you have to get used to ill kids on holiday. Poor Hons got hit with a chest infection which kept going and going and I had to go and see the very friendly Dr Aziz in the end for some antibiotics to knock it on the head. There were a few occasions where I had to give myself a pep talk to keep going like when we had a rather hairy drive to Essaouira with a sick Hon Bons and no air con. Dids is a star camper and Isla did well without her mum. Thankfully on return Fran is in a lot better place which is a huge relief.
I had been meaning to pen few words about parenting as it is such a big part of my life. I do love being a dad but your kids can also be a big test and I agree with my dad in that parenting is one of the hardest jobs around. My challenge is parenting whilst feeling crap physically and mentally means your tolerance levels for mischief are low. I have been aware over the past few years I have probably taken some of my frustrations with my MS out on the kids and Fran. I try my best to keep angry dad in check but it is hard. However, without MS I would still have my moments for sure.
For me I have been feeling really crap for a while now. A new thing in the mix is a chronic headache which won’t go away and is with me the whole time. GP said it was a tension headache and I have tried acupuncture and deep tissue massage with no joy. I went to see a neurologist/headache specialist who gave me anti-depressants which can work for headaches but made me feel super spaced and agro.
I have started working with US based Dr Will Cole who specializes in Auto-immune disease and coughed up a big chunk of cash for a large array of tests and some initial appointments. I was laughing to myself as I was sending off some frozen poo by courier to the US. I am hoping he can get me back onto winning ways.
Some big life news is we are leaving London! We have decided to take the plunge and ship out after 21 years. The lack of a decent school place for Isla started our search and we have plumped for Hastings, which is a rather lovely unpretentious seaside town on the South coast. I will do 3 work days in London with 2 nights away as it is not daily commutable and my body would probably not allow that. We need to flog our place and then we are heading out for some clean air, beach life and a new start. I am excited.
For my birthday present this year Fran bought me a ticket to
a weekend meditation workshop with Dr Joe Dispenza in Edinburgh. We have both
been doing a daily meditation since November and I am a convert so was excited
to see what was in store. Dr Joe is a likeable American who mixes meditation
with neuro-science. Meditation is nothing new it has been around for thousands
of years Joe has tapped into how you can use it as a healing tool. He believes
that we all have the divine power within us and can free ourselves from the
negative emotions and thought patterns that he believes causes disease (namely
His book which I read first and would recommend is titled Breaking the habit of being yourself. He does quite a good skit on how you have the same thoughts every day, which means you make the same choices and have the same behaviours and the same feelings to stay in the old state of being essentially living in the past.
In order to create a new reality you need to make new thoughts, new choices to have new experiences and new feelings and create a new state of being. (If you have a spare 15 minutes check out this video which explains it well).
A key part of his meditations is having a strong intention (goal) so for me you know it is running in the father’s race at school sports day. You emotionally embrace a future potential before the actual experience so many times that you condition your body to reflect that new mind by signaling new genes in new ways. This is the quantum law which in essence is saying that mind and matter are entwined.
You build into your meditation this strong intention (running in the race) with an elevated emotion which means imagining the joy and gratitude when this would happen. His thing is if you do this enough your body believes it has already happened. As you draw this towards you it will suddenly become reality when you least expect it.
He also has a special breath technique which I learnt how to
do properly where you draw up all your energy from the base of your spine into
your brain it is quite wild.
While in its most basic sense sitting on the floor with your
eyes closed calms the mind right down which is a good start to any day. Shutting
down the internal chatter I have with myself is also a huge part of this. The
guided meditation I have been doing the most is blessing of the energy centres.
These are like the Chakras so they go from the perineum (1), under the belly
button (2), lower abdomen (3), heart (4), throat (5), in-between back of throat
and back of head (6), behind your eyes (7) and then the portal above your head
(8). He believes that where you place your attention you place your energy by
concentrating on these energy centres you create order in your brain and slow
your thinking brain down.
stage 4 cancer. Fran went to his weeklong progressive workshop in Brighton and they had people getting healed of stuff all over the show and wheel chairs cast aside. I left with confidence that I can heal myself and I am well up for the next European Advanced week long workshop.
The time had come to get my tooth implant out it was with
some trepidation I went to see Phil to get the job done. In 10 years of doing
implants Phil has never taken one out that has not failed. The fake tooth
snapped off pretty easy but getting the implant out that had fixed to the bone
was not easy despite some heavy duty screwing. The piece of kit he had was not
up to the job so I had to come back a week later for more injections in the
same spot and have it cut out and stitched up. It was pretty brutal and as I
was cycling home from Angel I could feel the injection wearing off. I stopped
on Blackfriars Bridge to bang down a couple of paracetamol but they didn’t
touch the sides. I had to go straight to bed when I got home and I had a good
cry. There have been a few times in the last 3 years this has happened when I get
that primal urge just to cry and this was one of them. Why me, life is not
fair, I have already had too much crap blah blah it all comes out. I had a
rough 2 weeks on max paracetamol and ibuprofen which rather knocked me back but
the show must go on. I am currently rocking the vagrant look whilst it heals so
if you see me ask for a smile before the new bridge goes in.
I had a follow up call with Dr Petra from the Swiss Mountain Clinic and she recommended a new low histamine diet, which for the man of specialist diets is pretty hard to follow. I did it for a few weeks but no great improvement of my gut symptoms. My hope was that I can stay under her care and recommendations but with no email follow up after our call I think they are not that well set to care for people that are not at the clinic.
On the work front a trip took me out to Vancouver which like Norwich is a fine city and we got to see the Rugby 7’s tournament. I got another go at sit ski on Grouse Mountain and having nearly mastered a lift I can see a future doing this more independently, which is exciting.
On the home front our stress levels got upped a notch when Tasniem our au pair of 6 months walked out on us. She had been getting a bit shirty with the kids. Fran had a word and that was it she buggered off the same day without a goodbye to the kids, which was terrible. The silver lining here was the marvelous Molly who has come in and picked up the pieces with aplomb. Isla and I have been going to watch our local footy team Dulwich Hamlet, which is a great way to spend a Saturday afternoon.
It has been on the radar for a while but I was finally
flying out to Switzerland for a week at the Swiss Mountain Clinic. A quick
flight to Milan and then a lovely 90 minute drive up into the Swiss Mountains
via Lakes Como and Lugano to the pretty little village of Castaneda perched on
the hillside at 780 metres. I am not going to lie I was a little nervous what
was instore? I was expecting snow but was greeted with gorgeous sunshine which
instantly lifted the spirits and hung around all week which was a real joy.
The clinic specializes in Biological medicine which some might call Functional or Holistic medicine. It is the approach I have been following where you don’t just look at the symptoms you look at the whole body in an attempt to manage my MS. Relaxation is a key part to the healing process and the beautiful peaceful setting offered that. The rooms are simple but comfortable with stunning views (early morning below) and a nice balcony which offered the chance to have a cup of herbal tea in the sun.
I am a great believer in managing expectations and I knew that I was not going to be healed in a week but was hoping for some new guidance under Dr Petra Weichel. They put a lot of emphasis on testing so the first few days meant multiple tests (stool, blood, urine, heavy metal analysis, dental panoramic x-ray, vital point diagnostic, and analysis of the vegetative nervous system). They see disease as not a rigid state but a dynamic process and only develops when the body is overwhelmed with stress. Petra likens it to a barrel filling up with water and the final drop of stress on the body can tip you into the diseases state.
One of the tests they do is darkfield microscopy where they
exam the living blood under a microscope and look at the cells shape (they
should be circles mine were a bit wonky!) and this identifies bacterial and parasitic
stress in the liver. The clinic places a lot of value on the health of the
liver as it is one of the key detoxifying organs so lots of people here are on
a liver detox.
I settled into the slow pace of life here with tests and treatments every day. The kitchen is seen as part of the pharmacy so all the food is delicious – gluten free, low/no sugar, low carb, organic and mainly dairy free which suits me down to the ground. I have had the best gluten free bread here which I have stolen the recipe for back home. Meal times are a chance to meet fellow patients, share stories and experiences and give each other some love and encouragement. I made pals with Linda and Peggy (back right) who is accompanying her from the US. Linda is here for late stage cancer and was given only 5 weeks to live in December. She has brightened up over the week I was there so I am routing for her to get stronger. Kristina is from Croatia (front right) and has cancer. Ryan (back left) is from Ottawa and is on is 3rd visit and a dad of 5 kids and leads a very impressive life traveling with the family 8 months of the year whilst home schooling the kids and running a publishing business. It is a global clinic where they have received patients from over 60 countries. They call me Herr Hanmer which I rather like and as the only Brit here I am trying to keep them on their toes.
The place has a real family feel and all the staff seems to care
about your wellbeing and go the extra mile in making everyone feel comfortable.
My week’s treatments included two coffee enemas, a colonic, 3 lots of infusions
(vitamins, detox, cell regeneration) and ozone therapy where they take 150 ml
blood out mix it with Ozone and put it back in. I have also had Matrix
Regeneration therapy twice where they apply a current to your body and do
cupping on your back; it is supposed to help with circulation. Vital wave
therapy is a little bizarre where you are wrapped up like a mummy in bandages
and they apply a light electrical current through your limbs, it’s a bit weird
but very relaxing. Also some work on my liver which is apparently overloaded,
surely not after 20 years of heavy drinking! They do this liver hyperthermia
where they put a cold patch on the liver and massage it as well as doing a
couple of hot wraps.
The time in between the therapies allowed me to keep on top of work emails. Fran has got me into meditating so I now start my day with a meditation. In the afternoon I took a 90 minute hike up to Santa Maria further up the mountain with Linda or Ryan. I am not so good on slopes but manage well with some hiking poles.
Before dinner I have been having a stretch in the gym and also fitting in an infrared sauna. The clinic is a mobile free zone except for one room which has Wi-Fi. For some I know it is a bit conspiracy theory but I have been reading more about mobiles & Wi-Fi not being so good for our health. You don’t want to get people started here on the health perils of 5G! We have embraced this at home and now with a EMF blocker and switch our Wi-Fi off at night and I will be keeping my iPhone on airplane mode from now on.
Friday we did a short trip with Ryan and Peggy to Belinzona (below) which is the nearest large town. The clinic is very German but everyone outside greets you with Bonjourno and it feels Italian. We explored one of their 3 castles and had a wander round the town centre. It was nice to get out of the clinic I was going a little stir crazy.
I was pleased to find out I can carry on under Dr Weichel’s care when I go home which is great. As they don’t have all the tests results I have a follow up call with her in 4 weeks and then we can put together a proper plan. Petra take on my MS is I had a genetic pre disposition to MS and adheres to the idea that your genes load the gun and your environment pulls the trigger. Giving the water barrel anology some of the major players in tipping me over the edge was 2 long courses of antibiotics, some heavy stressful episodes. The new things I learnt is she is not a fan of all my travel (!) as you pick up parasites in your gut and airplanes expose you to lots of toxins. Also some of the major vaccinations I had for travel like yellow fever, rabies and hep B have caused more imbalances in the body. My final meeting we agree to wait for all the lab results from Germany but it looks like we will set a protocol to properly heal my gut. Then when I am ready try and look at the Coimbra vitamin D protocol again she thinks the problem was the vit D was not converting properly. I originally was set on coming for 2- 3 weeks but I am glad I did a week. This way I can stay under her care from London and give her protocol a chance and then come back again if it is working.
I had mentioned before that my tooth implant was giving me
ever more grief every waking moment it is a numb pain which I think is linked
to my eye aching. She suggested a test to see if I am allergic to titanium
which is what the implant is made of. However, I declined it as for me I know
it has to come out and be replaced by a bridge which I hope will give me some
relief from this constant annoyance. We shall see.
This week has perked me up again and I am ready to go and hope to get better. If you are like me you will be interested to know what it cost. Well staying there I think is quite reasonable £185 a night full board with 3 amazing meals a day. The treatments and tests they did at the clinic was £2,500, the external testing they send off to Germany £500 and some pills to take home £110 so all in with flights £4,700. Not cheap for sure but for me was well worth it. I want to say another huge thank you to everyone who donated to the Believe in Adam campaign and particularly Kathryn, Steve and Maggi for pushing me to do it. Video thank you click here. It has given me an amazing opportunity to try and this and for me was definitely worth it. You have all played a really important part in my healing process and I will be forever grateful for that. The real proof in the pudding will be in 6 months to see if I am feeling better. It is small but I do feel my numb feet have woken up a little this week so that is a good sign and offers me hope that this is the right path.
On the home front we had a lovely Christmas with my folks in
Norfolk and New Years with Em and Ed in Bath. The girls did their first ever
gymnastics competition and I was so proud of them cleaning up walking away with
2 golds (Isla and Hons) and a silver
(Diddy who has only been going for a year). Don’t mess with Team Hanmer!
September & October were terrible months. The Coimbra vitamin D protocol beat me up pretty good. I was already taking a medium dose of Vit D at 8,000 iu a day so upped it to 20,000 and just one higher dose made me feel terrible with headache, number feet and crunchier hands. Michael who I was working with said not to worry that it would pass in 48 hours but it didn’t. His thing is you have to work out what brand Vit D works best for you or in reality what oil it is mixed with (MCT, Olive Oil, Sunflower). I tried two other types and they made me feel like crap. I was prepared for this to work but not for me to get worse and of course Michael had never experienced this! There must be some reason my body is not processing the vit D properly. It was a depressing time as I don’t need to get any worse and I had some dark moments where I shed a tear or two.
Michael also works to alleviate heavy metal poisoning where the accumulation of heavy metals, in toxic amounts, in the soft tissues of the body. We are talking lead, mercury, arsenic and cadmium from air or water pollution, foods, medicines or lead-based paints. For people with auto-immune this can be a problem. So I tried a detox protocol where I took one Biofilam (Seaweed) pill and I got a headache, which is a detox reaction. However, mine lasted for a month! It was brutal and a soul destroying so I knocked this all on the head. The only good thing that has come out of this experiment is I am now make sure the girls get one drop of vit d every day. There is a link to lack of vitamin d in childhood and MS. It is unlikely they will get it but I want to do everything I can to make sure they don’t get it.
My left eye is still aching and the eye drops did nothing. I could be wrong but I think it is related to my tooth implant which went in a few years back and has always bothered me with a subtle ache. It was an expensive business and I have never been happy with it. I trust Paul my dentist when he says there is nothing clinically wrong with it. However, he agrees it might be my body is telling me it doesn’t like having a metal implant. It has recently got worse with my MS so I think I am going to have to have it out and have a bridge.
I went back to my nutritionist Marek and picked up where I left off with my diet of supplements and now adding some kefir into the mix for my gut which still is not right. I am reading so much stuff now about how importance of the micro-biome (gut) for MS, the problem is fixing it is not a simple task. It is always tough adjusting to a new normal of not feeling so good but you do quite quickly it and get on. At World Travel Market this year we did an event at Canada House and I remember doing a similar event two years ago when I was really struggling with my walking. It’s quite a mission from Excel in East London to Trafalgar Square with one DLR and two tubes this time. This year I got there with ease and I seem to be able to stand for longer so that is a good win.
In November Fran went on a weeklong intensive Joe Dispenza Meditation workshop in Brighton. Joe is a likeable neuro scientist and worth a google. I have started joining her on daily morning meditations which are a nice way to start the day. The same weekend she was away I did another transformational breathing weekend in London with the Big Breath Company which was just as powerful as the last one. It is an amazingly simple way to unlock past traumas. I had another big release and then felt amazing after. It is like a drug so time permitting I will look to take further courses to master this technique.
Some exciting news on the ‘Believe in Adam’ campaign we have reached £3,600 so I have booked in for a week at the Swiss Mountain Clinic in January. I was originally thinking of going for 3 weeks for the full works but apart from bankrupting me it makes sense to try a week and then I can always go back if it works.
Team Canada at a Prestige Roadshow
a wet and windy walk in Norfolk
The girls are growing up and fierce little gymnasts. Diddy (above) has just turning 5 which was very exciting. I have become an uncle again via my sis with dear little Oscar born at 31 weeks like his cousin Isla. I am delighted to say he is doing really well and such a cute little bundle. We are looking forward to a family fueled Christmas in Dereham with my Mum and Dad and New Years in Bath with the Tukes. I wish you a very Happy Christmas and a peaceful holiday.
Just back from a magnificent 3 weeks in Crete where the sun shone, the med was cool and the food was surprisingly good. It was fun hanging out with the Knight clan and the cousins. The girls did so much swimming they came back with mermaid tails, sun bleached hair with a tinge of green from the chlorine. I really enjoyed some proper sea swims out into the blue with Isla including a cave swim through. We stopped off in Athens on the way home and trekked the girls up the Acropolis which is remarkable. Holiday allows some time to relax the diet a little with a few more carbs and a lunchtime beer (Mythos) being the highlight of the day.
Dr Cicero Coimbra from Brazil has the potential to save my life. I first came across his high dose vitamin D protocol on a facebook forum where it had fixed someone’s numb hands & feet. There is an obvious link between MS and Vitamin D as MS is a disease of the Northern northern hemisphere. So if you live on the Isle of Skye (Scotland) you are 2.5 times more likely to get MS than if you live in London. In Crete no one had heard of MS as you get closer to the equator the cases get less and less. Cicero was doing a study on Parkinson’s and worked out the immunoregulatory role of this vitamin and that with high doses people could completely free themselves of the symptoms.
I am working with a genial Irish nutritionist Michael Cawley who has MS himself and has refined the Coimbra protocol for himself and his clients. All the stuff I have done to date which has served me well has been low/no risk. There is a bit of risk involved in this as high doses of vit D for extended periods of time cause an excess of calcium (hypercalcemia). Excess calcium is easily avoided with cutting out dairy, which I have done already and drinking 2.5 litres of water a day to ensure the kidneys eliminate excess calcium. One of the final pushes for me do this was a video Michael posted online of one of his patients who had similar symptoms to me dramatically improve.
The first month is going to be tough as there is a bit of up and down as you start slowly and work out my sweet spot level of vitamin D and the level of other supplements you need to make sure the vit D converts in the body. I am quietly optimistic that this could be a real game changer for me.
I got some good news recently in that my latest MRI shows no change in my scars on the brain, which shows what I am doing is working. I feel pretty good right now but don’t feel comfortable resting on my laurels. My research has led to several recommendations for a top functional health clinic (Paracelsus Clinica al Ronc) in the Swiss Mountains. I gave them a call and they said to start the Coimbra protocol and then come to them. They have shown some impressive results with MS patients and I would like to go there but the catch is it costs £15,000 for the required 3 week stay. One thing that is a bit frustrating is that my functional medicine approach is expensive. Vitamins, blood tests, consultations are not cheap. I reckon I have spent close to £9K in the last 2 years, which I don’t regret as it has got me in a good place but it does mean I spend most of my spare cash on my MS. I don’t have £15K down the back of the sofa to get out to Ronc so when I was speaking with my good work pals Kathryn, Maggi and Steve in Canada they offered to set up a fund raising page for me. I had a long think about this as part of me is not totally comfortable with asking people for money to help me. However, I feel I have done my bit for MS charities for the mo with pals we have raised close to £10K. I really need to do everything I can to keep me on my feet. Here is the pagehttps://www.gofundme.com/believe-in-adam/ if you fancy doing a cake sale. If I can get myself close to the old physical Adam I want to help others free themselves from the symptoms of MS.
Getting back to work after the hols is a bit like back to school for me as well as the 3 mermaids. It’s nice to catch up with local friends and settle back into the rhythm of Camberwell life but I am missing a beer at lunch with the sand between my toes.
It has been a great summer enjoying the sun and the football. What a world cup! I really enjoyed watching the games with Isla and our great pals Matt and Rach. The England boys did us proud.
One of the best weekends of the summer was the Norfolk Suffolk cycle tour with my good pal Blair. We circumnavigated the coastline from Kings Lynn to Ipswich some 220 miles in 3 days. Highlights were the Sandringham estate, Holkham Hall, a swim at Southwold, full English breaky in Aldeburgh, Minsmere Nature Reserve, a row boat ferry, gluten free fish & chips and a few ciders. My body feels pretty good after that and I love having that level of cycle fitness where you can really bomb up the hills.
I had a follow up appointment on my aching eye at the Western Eye Hospital on the Marylebone road. It is not the MS and my eye is in theory fine, which is good so I am hoping the dry eye drops they gave me will help.
My new field of research is the mind body connection through Mickel Therapy. It is a treatment developed in 1999 by a Scottish doctor David Mickel, which seeks to address problems with the Hypothalamus gland in the brain. The problem comes when this gland, which normally regulates everything in the body becomes overactive creating a wide range of symptoms. It is quite complex to explain but in a nutshell it is about managing how you process your negative experiences and not overthinking things. The idea is that your symptoms are your brain telling you something is not right and you need to change the messaging. The key is being aware of how you feel, acknowledging it, accepting it and then using the keys to Act. The three keys are setting boundaries so you are not being treated unfairly, communicating your emotions honestly and making sure you meet your own needs first in a balanced way. Try it! It has been helpful already and I think if nothing else will make be a better dad.
Books like Mind over medicine by Lisa Rankin are a good read. The whole placebo effect concept is quite interesting whereby if you believe the pill the doctor gives you will heal you (even if it is a sugar pill) it will. There are numerous studies to show this is true so I think that believing you can heal is the key here. The far end of this is the discovery of neuro plasticity and that our brains can change their structure and function through mental experience alone. There is actual science behind this and I think a lot more to come out on this.
I am trying to adopt a new mindset and relax a bit, live in the moment, stop worrying about my MS and really enjoy life. I continue to do my 100 transformational breaths every day, which helps keeps me centred. I have decided to take myself out of the social media MS space. I don’t feel it is very helpful for me right now and there are not any answers for me and I don’t accept the prognosis of Primary Progressive MS.
There is a new yoga class at work for an added stretch and I have a new toy in a chin up bar which is quite fun to stretch my back out and I have gone from 4 to 8 chin ups!
The end of the school year is quite emotional as we say good bye to our excellent Au Pair Denise II who moves onto pastures new. Isla has turned 8 with a magnificent trapeze party (video) and I took her to her first 2020 cricket game. Hon Bons is now 6 and already a pro on her new roller blades. Diddy is starting reception in September, which is exciting and we will have three at Lyndhurst proper. The Brexit au pair shortage was threatening to ruin Fran’s summer holiday but she managed to hook our 3rd Dutch Au Pair Tasneem. Sadly she is not called Denise but beggars cannot be choosers. Crete is where I will be heading to join the girls on Saturday for some more sun and some family time.
I have just come back from a mind blowing Transformational breathing weekend. The weekend was organized by the lovely Elif and Sarah from the Big Breath Company and was based at Braziers Park in the stunning South Oxfordshire countryside. I arrived on Friday afternoon to have a deeper breathing experience than my forays with it in London and to try and reclaim my breath.
The Big Breath joke is when people ask you how long you have been breathing you say all my life. There are lots of different breathing techniques out there but this one was devised by the American Judith Kravitz. The official blurb says Transformational breath allows us to breathe better, to have more energy, to feel more peaceful and loving, and ultimately to attain higher levels of consciousness. I can say it does what it says on the tin.
Braziers Park is a community based around a rambling Gothic House and an Organic Farm. It is run by a group of people that live their full time with the support of seasonal volunteers. They did yummy GF vegan food which helped keep the energy up. It was no surprise I was to be on the only boy present but it was nice to see some friendly faces from the Vauxhall sessions.
99% of us don’t use our full diaphragm when we breath so we are not getting enough Oxygen in. As you know I go every week to Swanley to breath Oxygen which can help MS. This is a natural way to get the same hit.
Over the weekend we learnt and experienced the three levels of the technique which is Physical, Emotional and Spiritual. Physical opens up the breath and then the most important element for me is the emotional side. What does that mean?! Well in short you feel like you are accessing your subconscious and clearing old trauma.
The basic technique is a long inhale and short exhale with continuous breathing. Elif describes it a like a wave going back up the beach on the inhale and then it breaks on the inhale. You set up an intention for the session, which is like a prayer one of my go to intentions is my body will heal itself. To warm up we do the Kundalini breath where you lift your arms up and breath in and pull down and breath out. You dance around the room for 15 minutes to get warmed up. It’s quite fun and I plan to do it with the kids. After you lie down on a yoga mat with a pillow under your head and start breathing with an open mouth. I have a plastic mouthpiece to open up my mouth to allow more air in. A key part of the exercise is when you are in the zone you shout out Ahh and kick your feet and bang your hands. This is where you shake out all your stress and negative emotions. We had 5 sessions over the weekend and on two of the sessions when I was doing this shake out I accessed the third spiritual level or Higher State of Consciousness (Josh Wink anyone?). This was pretty weird and powerful. I got into this shamanic state for a very short time where I felt out of it! Once you stop the thrashing and take a big in breath you get an amazing sense of Euphoria. One of the ladies described it as having 5 gin and tonics and I have to say it is better than drugs.
The whole session takes about an hour. We were lucky to have four facilitators with us including Nathalie a lovely Mauritian who is the head trainer here in the UK. They come round and put you in the correct position to breath properly. She really made the weekend for me as her magic touch allowed me to have a pretty mega experience. The last session she came to me and turned me on my front and got me in a great position to breath and let go which is the key. I suddenly broke and was crying uncontrollably like a baby. I had experienced some tears before this but this was something else she held me after this and I calmed down. I wasn’t the only person to have this experience over the weekend and afterwards you feel amazing and it sounds cheesy but you feel, euphoric and very powerful sense of unconditional love to all your friends and family.
It is very hard to put all this into words but I would totally recommend this for everyone. Particular if you have some past trauma in your life you want to resolve. I would say this weekend could be better than two years therapy as it Is not hard to do you just have to open up to the power of your breath.
It was quite a packed schedule but I managed a couple of rides around South Oxfordshire the Thames around Goring and Pangbourne is glorious.
People often ask me why you get MS. The truthful answer is no one knows but there are some factors in play. Firstly lack of vitamin D in childhood, which was probably true due to the lovely British Weather. Secondly, Epstein- Barr virus also known as Glandular fever, which I got after a Carter USM concert in my teens is definitely a factor. Childhood Obesity (No!), Smoking (No!). With auto-immune diseases there seems to be an IBS link which I had after some long doses of antibiotics. I think this is to do with the Brain and gut connection is the Gut the second brain or the first brain? The more I read the more stress seems to be a big player. My divorce and the time around that was super stressful and then Isla being born in France at 29 weeks was super stressful and when I got back I had the beginnings of my MS. How all these factors came together I do not know.
I talked about being stressed in my last blog, which I am still am but hoping by working on my breath I can help that. I think if I can destress it will help my gut heal and give more power to my diet protocol. I have just finished a book by Dr Gabor Mate (A Canadian) called the Body says no. He gives lots of examples of stress causing disease there is for sure a link for some people. His examples are quite extreme based on childhood trauma and also personality type which I couldn’t relate with. Epigentetics is now looking at whether stress can be passed down generations through the man’s sperm. Did my Grandpa’s traumatic experience in the war effect Jon (my bro) and I so we have both got rubbish health problems? I am not totally convinced by that but one thing I do know is the mind body connection is one that is huge. One thing the breathing has seemed to help me with is deal with some of this past stress which can only help me so I will carry on with it for sure.
Summer is here which is great. We had our first camping outing of the year with our Shenley Road friends Nick and Sue near Lewes and had a day exploring Eastbourne.
I have become a bit obsessed with my health. It is understandable but since my last blog I have been following lots of online summits including Keto Edge Summit, Fasting Summit and the Auto-immune vitality summit. They are free and offer up some good advice and give me the confidence that I am going down the right road to managing my condition.
The ketogenic diet is going well and I am in a good level of ketosis. I have good metabolic flexibility so if I am travelling and not super low carb it is very easy to get back into it when I get home. The one thing you get with Keto is this amazing mental clarity where you feel super sharp. The next natural step is to transition to intermittent fasting, which in layman’s terms means missing breakfast. So you look at a shorter eating window of two meals a day, lunch at 12.30 and dinner before 20.00. So weekdays I have a morning coffee and get a 16 hour fast, which is good for autophagy (self-cleaning). The Nobel prize in physiology and medicine in 2016 was given for discovering this mechanism of your brain naturally clearing up broken cells. The battle with MS is your brain is ageing too fast so this is a way to help my poor brain health.
I read a good book by Dr Michael Ruscio – Healthy gut healthy you. It thankfully backs up the gut reset protocol I am doing with Marek my nutritionist. I have not been feeling so good since I have been doing this with a bit more fatigue and crunchy hands but that is the way with these things one step forward and two steps back. We have made a few tweaks to my supplements so I am hoping to be back on track with getting my gut fixed, which I know will make a big difference for me.
I had a catch up with my neuro, which is generally disappointing as I am left with very little options. He has found a new brain scar on my latest MRI scan and if they find another one I might be able to do HSCT (stem cell therapy). However, having done lots of reading on this (I like Dr Gavin on this read here ) the risk reward seems too high for people with PPMS. I was shocked to find this new ‘wonder’ drug Ocrevus the NHS have not asked NICE if they can have it for PPMS only RRMS. You are very much the poor man with PPMS. Having read a lot about it and the small improvements it offers and the side effects I am not sure it is right for me. Fran says you are doing fine and don’t need the drugs! My left eye is still bothering me and I have got a follow up at an MS eye clinic to see if they can work out whether that is MS or just old age and I need glasses!
It is always worth zooming out and looking at what I am up against, which is nicely summed up by this graph.
Where am I at? If you look at 8 years since I have had it I would say we started like this but recently the line has gone down as my balance and walking has got better for sure. I feel fit and as trim as I have ever been and not had a day’s sick in at least 5 years. My worry right now is my hands which continue to get more crunchy and I worry I will lose function, which would be a disaster. Time will tell what my line does.
Not to rest on my laurels I have joined the MS Gym. It is a facebook group that has lots of good stretches to help people with MS and the idea is you can teach your limbs to still work and bypass your damaged nerves by doing repetitive exercise, stretches and self-massage.
I was out in Canada for our annual conference Rendez-vous in Halifax, Nova Scotia (only 5.5 hours away). I did a great little pre trip with one of our trade journalists Steve. A boy’s trip up to Cape Breton with some fab seafood and the biggest win was playing 2 rounds of golf on one of Canada’s best courses Cabot Links. We were there on the first day it opened and felt like royalty as I spanked the first drive down the middle. Last time I had played golf I had really struggled to get round carrying my bag but with a kart I played pretty well for a very part time golfer. I hope to play a bit more in the UK. These trips always allow me to see where my body is at and I tested it out on the Skyline trail hike which is a 4 mile loop in blustery conditions. I was keen to do the whole thing and got to the halfway view point OK but on the way back my legs started to go. The 4 hours sleep from jet lag and 4 hours driving didn’t help but with a steady arm from Steve I made it back to the car in one piece. Phew!
The kids are on good form right now and a great source of inspiration for me to keep going. Check out the VIDEO that went with our MS shoot for Kissing goodbye to MS. We had a great couple of weeks in Morocco at Easter, which was just the tonic after a long winter. My latest focus is to try and take a step back from Dr Google and chill out a bit more. I have become a bit obsessed with healing myself and need to calm down and de stress, which is a big part of managing MS. It’s that classic dilemma you have a chronic disease with a hazy future and you have to try and stay calm. Good luck!
I am feeling good at the moment and I can even say for the first time in a long time a bit better, which is great. That is all based on my mobility and my walking has been the best it has been in 3 years and you could not tell right now I have MS. My hands and feet are still a little crunchy but I am used to that now. When I started working with my nutritionist Marek my goal has always been to run again. Not a marathon or even a 10K but I want to run in the Dad’s race at sports day (50 metre sprint). We will see if I can make it this summer.
I have got really into Keto diet (see last chapter) and I think it is paying dividends right now. Next step in the protocol is to heal my gut. Over 2,000 years ago Hippocrates said ‘All disease begins in the gut’. It is a big thing in the Paleo/Keto world and modern medicine seems to be recognizing it as well. On my latest trip to Canada I randomly got chatting with a Pediatrician at the Fairmont Banff Springs who was at a conference all about Gut health. From all the MS stuff I have read there is definitely a link with MS and I had IBS problems just before I started getting MS symptoms so I do think there is some sort of link. I have a few more herbal remedies and probiotics to take to start this process.
My latest ski trip to Canada has also perked me right up. We had an amazing week in Alberta in the Rockies. It was quite surreal leaving a rather snowy London to an even snowier Calgary. It was a chance for me to have another crack at sit ski. Last time I had some fun but wasn’t totally sold on it but this time it clicked. Banff Lake Louise offers up 3 great ski resorts (Sunshine, Lake Louise and Norquay). Rocky Mountain Adaptive snowsports is based out of Sunshine and that is where I hit the nursery slopes again with Chelsea my instructor. The sit ski was a superior model to the one I had been on before with an improved suspension system, which meant you could really feel the turns. My snowboarding experience and pilates helped as you are always on an edge and it is all about your core and using your hips to steer. Getting on and off the lifts is a right faf as you get lifted on but we got into a good rhythm with that. Over the three days I managed to start nailing my turns and stopping (!) and felt like in time I could master it. One of the great things with it is you can get some real speed and on my last day in Marmot Basin I managed to clock the fastest speed ever (for me) on snow which was quite the rush.
Canada really does Winter very well and there is so much cool stuff to. The icefield parkway from Lake Louise to Jasper is one of the world’s best drives is magical in Winter with no one about you get these jaw dropping vistas all to yourself. I got out on a fat tyre Mountain bike again which was fun if not a bit hard work and properly cold at -16. I was really chuffed with myself managing a 3 km ice canyon work with a fair bit of scrambling followed by a short snow shoe. The dark sky preserves in the Rockies are really quite something coming from polluted London. We also sampled some of the great Alberta Beef and a few glasses of Okanagan Red. It is only really on these trips that I can test my body out as I don’t do much walking at home but I coped with the trip well which means a lot as it is a big part of my job.
I would recommend everyone reading this try transformational breathing. I have done a it a few times now and it makes me feel amazing. So they teach you to breath?! The idea is you open up the full potential of your breathing system and optimize your Oxygen intake. I have to say first time I did it it was quite emotional (I had a little cry) but it was like taking drugs I felt elated afterwards and floated home. Give it a go!
The Kids are on great form at the moment and very excited about trying out their new mermaid fins on our Easter holiday to Morocco. As a family we had a lot of fun doing a photo shoot for the MS Society’s campaign ‘Kiss Goodbye to MS’ see a portrait pic they did for us below. The Sauna has been a life saver in this cold weather but I am hoping spring is round the corner. Roll on next week when we fly to Marrakesh.
I have not been too inspired to blog of late as I have been pissed off with my MS. My mobility remains much the same but the numbness I have in my feet is now in my hands full time and makes me worry about losing my grip. Having thrown a lot at my MS last year 2018 is the year to consolidate on what has helped. So that is Pilates, Reflexology, Oxygen Therapy, CBD Oil, Keto/Paleo Diet and plenty of saunas!
The Paleo diet has definitely helped me with my back pain, walking and mobility. Terry Wahls whose protocol I have been following has three levels of intensity on the diet and I have been on the middle one. I have decided to crank it up a notch and try the Wahls Paleo plus under the guidance of my nutritionist. It is the one that has really helped her get out of a wheel chair. The key difference here is you go very low carb (50g a day), medium protein (90g) and high fat (140g). Normally, the carbs contained in food are converted into glucose. When you go super low carb the liver converts fat into ketones which replace glucose as an energy source. If you are interested to learn more check out the Paleo gurus Mark Sissons and Rob Wolf who I really rate.
So I track what I eat each day using a free app MyFitnessPal. The hard part is getting your daily net carbs under 50 grams. As an example a cup of cooked white rice is 37 grams of carbs so that is out so you get your carbs from vegies (no fruit). I have been low carb for a while now but you really have to notch it up getting more good fat in your diet through coconut oil in coffee and being liberal with grass fed butter, olive oil in your food and munching lots of avocados. You measure your ketone output using a blood monitor to keep on track.
I am not going to lie it is quite hard but I want to see if it can make a difference. I did two months strictish Keto October and November and didn’t feel much benefit. I have made some adjustments with the help of Marek my nutritionist and am going full on for Jan and Feb.
I had a catch up with my neuro who I rate in November to finally get results from my MRI scan to see what is going on with the scars on my brain and back. He compared it with my original diagnosis MRI from October and he seemed to think there had been a small amount of deterioration. We discussed my options, which are limited. This new drug Ocrelizumab (out in the US, Canada, Oz) is supposed to be licensed in the UK this year and he sits on the panel that has to convince NICE that we should have it. So there is a chance that I will be able to take that this year. There is also the stem cell transplant which I have discussed before on the blog. My Neuro said someone described it like being run over by a truck and then it reversing back over you! I asked to be considered for this to give me another option. Fran and I are not convinced about this right now but at least want to keep the option open as it would take time to get to the front of the queue. Whilst a lot of people are evangelical about it when you have Primary Progressive MS there is less chance of it working well and also some people come out worse and someone died from it in Kings Hospital down the road last year. Watch this space on that one.
On the home front the loft conversion is complete and a triumph. That alone takes a lot of stress out of our lives and gives Fran and I a wonderful space at the top of the house. We have managed to find another good au pair called Denise from Holland. Diddy is now in the new nursery at school, Hon is in Year 1 and Isla Year 3. Fran has been busier than ever with work trips to Japan, South Africa and Australia. I organized a fun dad’s pub crawl around Waterloo and had a great Mega FAM trip to Canada. You can watch what we got up to on this link. Happy New Year MS Fans.