Low Does Naltrexone or LDN for short is my latest wheeze and although it is early days it seems to be a winner. LDN has been mainly used to treat alcohol or opioid addictions. However, someone worked out that in very low doses it can help all manner of ailments with MS being one of the favourites. I am working with Dr Harpal Bains who is based in the city of London. You take a few drops under your tongue before bed and it goes to work. After only a week it sorted out my sluggish bowel and I am pooing the best in 15 years which is a real win for me. Time will tell what other benefits it brings.
I have been seeing Dan an amazing Osteo in Hastings who uses kinesiology to identify weakness in your body from past knocks and scrapes. It is quite strange as it is all very gentle but I feel it has helped. No surprises but the damage from my tooth from the implant is causing other issues and he goes about treating them. Thanks to the lovely Lexy I discovered Michael Hartzel a spiritual healer based in Chigwell Essex who lays hands and releases trapped emotions in the body. Fran and I have seen a few ‘healers’ over the years who have done nothing for me. However, Michael is different it is a similar release to when I do transformational breathing which in turn loosens up my walking.
Getting the girls back at school has been a big relief all round. The home schooling was tough but the snow coming in February was a welcome break allowing sledging in our garden. We finally own a trampoline which has got the girls outside more. Thanks to mum I now have some walking poles and have been pushing my walking and can now do 2 miles. With not much else to do we have been exploring the surrounding area and geo caching which is like a treasure hunt and the kids love it.
I still love getting out on my bike and we have bought a table tennis table with Fran and I having a knock most days. There is no doubt exercise is good for MS but how much? I have always tried to push the limits of my body. Looking back I don’t think that has always been the best for me. I used to go to Crystal Palace for a swim and wasn’t happy if I hadn’t swum 1km which sometimes left me hardly able to walk when I got out of the pool!
We ended up having an extended stay in Jamaica over Christmas which was a real Godsend. Due to the Kent strain flights got stopped so we were stuck! Short of a long story we ended up on a repatriation flight 10 days later than we were supposed to come home. It was nice being away for Christmas and all the UK restrictions. Isla and I had fun and games going to Kingston to get her a new passport as it expired. We loved Jamaica and especially Negril which was even more chilled than Montego Bay. The locals are super friendly, the sea swimming fab and we hope to go back one day.
What does success look like when you have a progressive chronic disease? Should I be happy to still have sub par function of my legs after 10 years. How do I extrapolate the last 10 years from my first symptoms to the next 10 years? It’s a tricky one that I spin round in my head a lot. I am 45 soon, what will the next 10 years look like? When I am feeling perky I would say it doesn’t bother me, live in the moment Adam but the reality is it does.
My feet are pretty tingly and lumpy most of the time now and my hands are starting to go the same way. Will I be able to carry on driving, lift a cup to my lips or walk my daughters down the aisle? I dearly hope so. I wish they could find a cure in less than a year like the vaccine. However, research has gone backwards due to any health condition that is not Covid on the backburner right now.
Last month I have felt less mobile and a bit more stiff than normal. I went to see Dr Ian my chiro and my atlas was back out. He put it back in and my left leg was an inch longer and foot drop much better which was so pleasing. Little bits of hope like that are what I need to keep going.
When I got diagnosed I got two books the Wahls protocol and Overcoming MS (OMS). I have largely been following Paleo / Wahls protocol with carnivore this year. It hasn’t been the magic bullet I had hope for but I do think cleaning up my diet has helped. Time to give OMS a try which is almost the opposite (don’t laugh!) low saturated fat & vegan with fish. It has been a meaty year & whilst the paleo crew say high cholesterol is not a problem and your brain needs fat. I am not sure if that is the case for moi. The protocol recommends exercise, vit D supplementation and meditation which I have been doing. Mentally I feel better following a plan so we will switch up the diet for a bit and see how we go. One interesting positive from my strict carnivore it seems to have reset my gut and I don’t need the smooth move tea at the moment.
Its been a sad year at work with the travel industry on its knees. I am very fortunate that my job seems safe for now and the home working has been a real boon for me with my ever limited mobility. The commute to the kitchen table or office is 10 seconds!
The ebike has been a good friend and I am getting to know the coastal paths and country lanes of East Sussex.
The pandemic gave us the opportunity to get air miles seats at Christmas, which is unheard of. By a complete fluke of timing we escaped tier 4 and a travel ban by one day and are decompressing on the beach in Montego Bay, Jamaica.
I have just endured a month on the Paleo Ketogenic Diet (PKD). I wanted to see if I could take the carnivore diet to the next level to ease my MS symptoms. There is evidence of auto-immune patients experiencing some level of healing using the carnivore diet. So I hooked up with Dr Zsofia Clements who has developed their PKD version. It is a principle I have heard before (and tried before) heal your gut heal your MS as 70% of the immune system resides in the gut. The protocol involves having just enough food to survive eating only meat (Beef, Pork, Lamb) with a good helping of bone marrow and liver to get all your vitamins you require. The magic number for me was 350g of meat a day of which a third has to be fat. So that is one decent sized steak or portion of mince. That is it! For the healing to happen your blood glucose needs to drop below 4.5 and your Ketones need to be plus 2. The ketones was not a problem for me but for some reason the blood glucose would not drop below 4.5. I tried going down to 300g and up to 400g but still no joy. After 4 weeks of trying and feeling worse and loosing 7kg (!) I broke.
I have just spent most of this weekend eating which has been a joy. It seems to be the same for me with these gut healing protocols I hit a wall which I cannot get through or there is some barrier to my healing. I had a catch up with the doctor and she said the problem had been me exercising in the transition. My blood work looked great after it apparently. However, even if I had some healing it is such a tough diet to follow long term and sucks all the joy out of food and eating.
It was nice to go up to London and see my colleague Nim and have lunch together. I am missing the social contact of the office but working from home does suit me well with my limited mobility. World Travel Market is normally one of my busiest weeks of the year and was always quite the challenge on my body but this year it is virtual which suits me rather well. Everything going virtual for people with disabilities is a real boon.
The girls are doing really well at their new school which is a real joy. Making local friends with the rule of 6 is a tad challenging. We have carried on swimming in the sea up till a few weeks ago which is so exhilarating. Need to get a wetsuit to carry on through the winter.
We moved into our new home on 2 July and are feeling pretty settled. London seems another lifetime ago and we are enjoying our new found freedoms of fresh air, the calm of St Helens wood, dips in the sea and the girl’s horse riding on Sundays. The lockdown was quite a stretch but once we ditched home schooling we had a nice time together. It was great to finally host family and friends in our new home.
I am very fortunate as my job seems safe despite the travel industry being in a state of meltdown with borders closed and the quarantine lottery of travel right now. Working from home certainly suits my limited mobility. We were very fortunate to get to Kos (Greece) and had a lovely couple of week’s glamping at Sails on Kos. The beaches were very quiet. I always enjoy swimming and spent even more time swimming underwater when I have a little glimpse of what life was like before MS with no pain or stiffness.
I had a catch up with my neurologist Victoria over the phone in the summer. It was lucky I could take the call poolside in Greece rather than schlepping up to Kings Camberwell. She had finally got round to reviewing my MRI’s and as there has been a new lesion showing I could try and put myself forward to get this new drug Ocrevus. I had been thinking about this for a while and have decided not to take it. My last neurologist Richard was sitting with Victoria on the fence whether I should take it as I don’t have very active MS and it really works when you have very active MS. There is always side effects with these drugs and with Ocrevus there seemed to be an increased cancer risk and also more relevant now an increased risk from Covid. There was a part of me was keen to try it but the other part was quite happy doing my thing and feeling pretty good at the moment.
Two of my lockdown heroes have been Katie Brindle who via Instagram has bought Qi Gong into my life. It is lovely set of gentle movements which are great first thing and help my balance. Stu at Breathpod has also been fab bringing simple breathwork and meditation to our mornings. If you want to get an easy intro into the power of breathwork do check out Breathpod on Insta at 08.00 weekday mornings.
The carnivore diet has got a touch boring so I have been having a bit of fruit and the odd cucumber. I feel good on it and will continue on a very low carb approach as I think that is the best way to lower my inflammation from my MS. My walking is the best it has been in a long time. I only use my stick now on extended walks. This is thanks to Dr Ian’s chiropractic skills. I cannot tell you how grateful I am to this man as he has improved my mobility when it was continuing on a slow slide downhill. It is a bit frustrating that the NHS cannot offer this type of care for patients. If you had a new drug that did what he has done for me they would be proclaiming it as a miracle and it would certainly be a lot cheaper.
The e-bike is coming into its own in Hastings with all the hills. Blair and I did a lovely ride to Brighton via Beachy Head along the coast. The girls have started their new school Vinehall which has been a real hit. I love the fact they get stuck into everything they do and are now getting exposed to a much more varied curriculum with lots of games and fun stuff like carpentry. I like most am a creature of habit and being back into the rhythm of the school days suits me well.
Have you watched the documentary Game Changers? I have and wasn’t feeling it. Vegans are everywhere but I am not sure it is the right answer. Chris Kresser does a great critique on Joe Rogan’s show check it out. My dietary approach has always involved lots of veg and little dairy but has always had meat and fish in there. Having not felt like much is going my way I am giving the carnivore diet a go, which sticks two fingers up at the vegan fad.
Shawn Baker’s excellent book The Carnivore diet and Paul Saladino’s The Carnivore Code are good reads. The premise is going back to what our ancestors ate and just eating meat/fish/eggs and drinking water. They offer compelling arguments that you can get all the vitamins you require from eating this way. Paul Saladino argues you have to have organ meat which I have been doing with some tasty liver pate. His argument is that we weren’t meant to eat greens and they were only survival food when there was no hunting. Plants over many years have developed chemicals to protect themselves such as lectins and oxalates can be toxic for some people. It is the ultimate elimination diet which is what helps a lot of people. If you go to the website meatrx.com you will see stories of salvation. Marek who I started working with years ago was big on avoiding lectins and oxalates and nightshades which make up a large amount of vegies and fruit.
Fran has joined me for the ride and we are trying out all the local grass fed beef from the farms of Sussex. I like the simplicity of it and the fact you don’t have to chow down a ton of supplements. It has not been too bad if not a little dull but I do feel pretty lean and mean. I am hoping it might be the magic to sort out my long term gut problems.
I am delighted to announce I have had my own game changing moment in my mission to cure my MS. Dr Ian Smith of Newport Chiropractic is my new hero. I have had my Atlas (C1 Vertebra) adjusted which sits at the base of the skull. It is a simple but precise procedure which requires X rays and my MRI’s to line up the angles to put it back in place. Misalignment by a tiny margin has shown to mess with the movement of the fluid spinal cord and brain and can cause the lesions which are supposed to come from my MS. I have always felt the science they are working on with MS is wrong and using MRI scans of peoples brains don’t correspond with their MS.
My walking has been poor of late and I have been using my stick for all of my walks. Particularly to get down the beach to swim in the sea. After my first appointment I was walking better with no stick and a lot less foot drop and could get in and out of the sea. I have just had the actual adjustment which was very simple so we shall see. I am already over the moon with the results as this could be the key to keeping me mobile and out of the dreaded wheelchair.
We are loving our new life on the coast. Six months with the girls off school and trying to stay motivated with home schooling whilst living in each other’s pockets has been the biggest test. Life is coming back to normal and the girls have started pony club and tennis lessons. We have been exploring and a highlight was kayaking on the river at Bodiam. The beach hut is our new spiritual home and we have had a few day visits from friends which has been lovely. Would you believe it the house has finally gone through. Three months waiting for a mortgage survey and we get the offer within 5 hours. The flat has been great but a bit tight and we complete and move on Canada Day 1 July. It was meant to be!
We have now moved out of London and it feels great to be down by the seaside and out of the Southwark corona soup. I moved down to London in 1998 and was a little sad to say goodbye to 86 Shenley Road. It seems another lifetime when we moved south of the river with dear 9-month-old Isla. I remember the house feeling massive but we managed to fill it up. It was a great 9 years in Camberwell/Peckham with getting married, the arrival of Hons and Dids, nursery, school, Fran’s business going from strength to strength and my move to Destination Canada. Fran invited some of the school friends around to wave us off and we ended up with an illegal social distanced street party for half an hour, which was fun but did scare some of the neighbours! The kids did amazingly well with no tears.
The last couple of weeks in London were quite stressful with trying to make the move to 53 St Helens Wood road happen. Short story we didn’t make it and are staying in Nina and Phil’s lovely flat in West St Leonards right on the beach. We have exhausted our mortgage options and are waiting for the surveyors to go back to work to validate the house valuation. There is one other option with Bank of Ireland who might lend us the money without a valuation. Barclays really let us down and we sent a complaint letter in regards to the early repayment fee (£14K). Fran managed to find their CEO’s email and within 24 hours we had half the money back, which seemed a good result.
Exciting lockdown news is Fran has bought a lovely Emu e-bike. Central London was very quiet we did some amazing bike rides along the river, through town and up round Hyde Park. We have picked the daily cycle up down here with long windy rides along the seafront. It feels a lot less locked down here, we have been having a lovely time on the beach out front and I have managed a couple of bracing swims. The old dears of Bexhill take the social distancing quite seriously practically throwing themselves off the cliff rather than come close to us swooshing past on our bikes.
The lockdown has not been great for my health. The stress of the move and general chaos has meant my headache has returned and stiffness is at its max. Everyone that relies on physio or in my case acupuncture and massage to manage chronic pain has had to grin and bear it. I was supposed to be having a face-to-face catch up on my Dr Klinghart protocol. However, I had to make do with one over the phone. The new protocol does not seem to be bearing fruit yet.
Whilst we don’t have a house we have found a beach hut we want to buy and are excited about the times that will offer us this summer and beyond. Post lockdown we are looking forward welcoming you all to 1066 Country.
I love Lauren Laverne’s BBC 6 music breakfast show and was delighted to get on her desert island disco slot. The idea is you send in a track list for your own rave on a desert island. I went with 90’s house bangers and got to talk about my MS curbing my dance moves. LISTEN HERE This lockdown is rather uncharted territory for the Hanmer family. It takes quite a lot to tie us down but Corona has done it for sure.
I would not recommend buying and selling a house in these times. We have had a stressful time trying to make the move happen. The good news is we managed to exchange on our house sale so Shenners is a goner. However, securing the house we really want in Hastings has had more twists and turns than I would care for. We are still in the game but porting our Barclays mortgage has been a painful experience. The house we want to buy is empty but Barclays still won’t do a value survey even though the government advice says you can. We have been forced to try and get a new mortgage with Santander, which will mean sucking up a £14,000 early repayment charge. We were desperate to escape before the lockdown to a big garden, St Helens wood and the beaches of East Sussex but no such luck. We hope we can get out by 23 April when we are supposed to complete on our house sale.
Fran has done a great job with the home schooling. We start the day with Joe Wick’s rather fab PE session, then French (dualingo), Literacy and then I do a cycle with the girls. We have been doing laps of our local parks Ruskin, Peckham Rye and Brunswick (VIDEO HERE). Back for lunch and then maths and art with some outside garden play to finish off. I am not going to lie it is tough and the kids are pushing all the wrong buttons right now. The challenge is the weekends as ours are normally fully charged and not used to the slower rhythm of being just the five of us on lockdown.
People ask me if I am at more at risk to Corona with my MS. My understanding is I am at no more risk than you as I am not taking the drugs. We are leading a monastic existence so apart from Fran hitting the supermarket we have not interacted with anyone in the last 14 days. It feels like we should escape it for now all being well if we have not had it already.
Keep your fingers crossed for the house move and try to keep sane.
We managed to nip off to Cape Town for some much-needed sun at half term. Staying in some magnificent Air BnB’s in the city and down the coast at the picture postcard Llandudno. We mixed beach time with exploring. Highlights were a fab game drive in Buffelsfontein, a lovely lunch in the winelands after saying hello to the penguins on Boulder beach. South Africa has a lot going for it with fab weather, healthy food, nice wine, friendly locals but there is definitely an edge to proceedings with high security, panic alarms and barbed wire. It was just the tonic and with no jet lag we managed the two overnight flights via Jburg fairly well with the girls going straight into school after.
My walking has further diminished and it was too much for me to have a frolic in the ice-cold sea with the girls. I am in the stride of using my stick and it does have its advantages of keeping me on my feet. Crucially it turns you from being invisibly disabled as many MSers are to visibly disabled. I have started taking the assisted lane at Heathrow and the odd outing I take on the tube you get a seat. The best queue jump was landing in South Africa at security. I went to the 6 Music festival and got an accessible seat which included a free one for Fran my carer! I have a weird sense of being a fraud in my head of being disabled but the reality is I am.
I am still feeling mentally perky even with the Corona take over. My detox regime continues with no great benefits but not great losses. Many of my MS crew who are taking drugs have extra worries over Corona. It makes me feel happy for now there is still no drug option for me. My dear old travel industry is in meltdown, which is very sad. Our Easter holiday to Morocco is off and it seems to be putting a strain on our move to the coast. We are still hoping to make it and hole up in Hastings soon.
I am keeping the faith in these tough times, counting my blessings, meditating and trying to have some fun.
2020 has started well. I am feeling a lot perkier and thanks to the magical Tim Harwood (aka the headache remover) I have got my mojo back. We had a fab Christmas on the Swiss slopes in Nendaz with the extended Knight clan. We had loads of snow and enjoyed sliding around on the slopes and in the hire car. The girls took to skiing like a ducks to water and it was fab to see Diddy coming off a lift on day 4 after hitting a red run. Fran got out with her sis on snow shoes so I hope it won’t be our last family ski holiday.
I had three days out on the biunique sit ski with Xavier my instructor. It was a new model for me which meant you cannot ride the lifts, which was a bit frustrating as you are in and out a lot. The resort area was quite challenging with limited blue runs but I managed to get going on the red runs and had some fun. Check out a video here. MS feels like you are walking on ice so I had to be on my metal getting around the resort. I managed to stay on my feet with my stick and Blair’s grippy boots.
My NEW Dr Klinghart regime is in full swing. He has identified three main causes of illness.
Toxicity from heavy metals and other environmental factors (inc WIFI).
Hidden infections such as parasites and lyme.
Unresolved trauma – physical such as car accident or emotional such as divorce.
They use kinesiology muscle testing to assess what the problem is and where it is. It is on a similar detox vibe as before with a large mix of supplements, binders (chorella and clay), powders, tea, sprays, creams and light therapy. They place a lot of value on your dental health and I am wearing a rather uncomfortable bite guard which along with a nightly lymph massage helps my brain detox overnight. The tabloid headline on this protocol involves drinking your own wee. Well not quite but they have taken a therapy developed by a Russian doctor and army general who used to protect is troops from disease when medical supplies were limited. You wee in a jam jar, shake it 50 times, empty, fill half with water, shake 50 times empty and then once more and then down the hatch. Try it one morning! Joking aside it is supposed to wake up your immune system. I am 6 weeks in and have felt a bit detoxy (mild headache, achy bones more numb feet) which is normal. Time will tell if this works.
I had an encouraging appointment with Victoria Williams my new neurologist at Kings Hospital. The clinic was calm and on time which was a good start. She took her time with me and I felt she had time to care a little bit which was nice. We talked about Ocrevus this new drug which might be available to me. You need to show two new active lesions on your MRI. Apparently it only works well if your MS is very active and she says that mine is not so active, which is good. They didn’t have all my MRI’s but it was lucky I had my original one on a CD with me so they will review when they do. I asked about Sativex which is a MS Cannabis based drug and she said it wouldn’t work for me so we will leave that one.
Exciting news is we have accepted a good offer on our house in Camberwell so the move to Hastings is on. We are going to rent in the short term to get down there and get the girls settled in the new school in the summer term. All change with the Hanmer’s. Next stop Cape Town for some half term winter sun.
I love this song by the Cure but I have been shedding a few tears these last few months as I have felt terrible. It culminated in a mini breakdown in the car with the girls on the way to mum’s 70th birthday bash. The pain just got too much. My poor family has been doing their best to put up with the grizzly bear with a sore head.
September was the start of my new gut healing protocol which started with a brutal 3 day bone broth fast. In the paleo sphere it is supposed to be the elixir for healing your gut and as 70% of the immune system sits in the gut – heal your gut heal your body. I then transitioned to 5 days of soups and 5 days of stews. I have cut out some nasties for the gut like FODMAP vegetables, nuts, seeds, dairy and nightshades (tomatoes, potatoes, peppers). I have also been off the booze which has been quite the revelation as I have not missed it. The strain has come from antimicrobials and binders which are supposed to kill the bag guys in the gut and then you sauna and sweat out the toxins. However, after battling through a few months of this and feel like utter crap it was time to stop. There is normal a bit of pain in the transition but not this long term. I have quite the sensitive constitution and don’t seem to be able to tolerate much. Having spent enough to buy a small car on Dr Will’s protocol it was time to take the good things and move on. One revelation has been smooth move tea which I would highly recommend if you struggle in that department. Cleaning up my diet another level has definitely helped whilst adding in some superfoods like bone broth, adaptogen mushrooms, seaweed, liver and upping my fish/seafood game. I have been doing a lot more cooking and found some new recipes to boot.
It was definitely time to do some work on my mental state and I have worked with the excellent Kerry Jeffrey on skype in Oz. She has developed a program for moving through the grief of chronic illness using hypnotherapy and other bits and pieces. It has culminated in me having a much better acceptance of my illness and taken the internal fight out of the equation. I have moved to a more living in the moment, acceptance and adjustment mindset, which will serve me better. The key is to find more joy from the little things in life like reading the girls a story or a morning kiss before I go to work.
One of the reasons I have been in such a state has been the headache which has got worse! I have finally found some blessed relief working with Tim on Myofascial massage which is all around the head, jaw and inside the mouth along with George’s acupuncture needles and lymph massage. Fran pushed me to go and see Kendra and Michelle in Bath who work under Dr Klinghart. They have helped her and I had a great session with them and I think there are some exciting things to come which have put a spring back in my stride.
Rewind to the summer we had a wonderful time in Turkey. The sea swimming is something else with gin clear water and I had two swims with turtles. Our first foray into all-inclusive hotels was a winner with the magnificent Hillside hotel. The girls loved the kids club and mum and dad enjoyed the adults only beach and everyone was a winner with some fab food. One of the great things about kids is their joy in the smallest things like who is going to push the button in the lift everyday. We went onto Kalkan and enjoyed their beach clubs and boat trips. It was very British which at first took us aback but the kids made some pals and I found dads following the epic Edgbaston ashes test when my phone had run out of battery. The stick was essential as everywhere was cut into the hillside so lots of hills but I managed along with our car hire helping out.
Blair and I managed another bike tour with the help of an ebike for me round the Kent Coast from Canterbury up to Whitstable and round to Hastings. I would highly recommend the cycle from Whitstable to Margate it is simply stunning and allowed me to catch my old pal Ben in Ramsgate for an excellent lunch. It was funny as we had gale force winds with wind behind and sun on day 1 and then torrential rain and headwind on day 2.
I had a good catch up with my neurologist. Now I have a new lesion I am deemed as getting worse so I can take Ocrevus, which is this new drug so I have asked for that and I will see when that can happen in the new year. The Hastings move has not been helped by a stubborn housing market and not getting a sensible offer on our house but we do hope to get there in 2020. Not long till we head to the mountains for our first white Christmas with the full complement of Knights. I am very excited to get some more sit ski in and enjoy the girls taking to the slopes.