1. Does the company have publically accessible, easy to understand lab reports?
Companies such as Endoca selling quality products will be proud of their lab reports, and will want their customers and the general public to have easy access to information regarding what is in their products. Do a quick search of the company website, or reach out to their customer services team who should be able to point you in the right direction. You want to see cannabinoids listed, as well as terpenes and evidence of absent chemicals and pesticides.
2. Are the products organic and whole plant?
If the products are certified organic, you will see the logo on the website. Some companies will grow organically but may not have a certification, which isn’t ideal but even without certification, a quick glance over their lab reports should show the testing for, and subsequently negative levels of a variety of chemicals or toxins.
Research and anecdotal reports support the claim that whole plant CBD extracts are more therapeutically potent than isolated CBD extracts alone. Make sure the lab reports of your products show terpene and other trace cannabinoid levels, otherwise you may be buying an isolated CBD product, which means the company is using only the CBD molecule in a carrier oil and no other beneficial plant molecules.
3. Is the CBD amount of the product clearly labelled and verifiable?
As the industry is yet to be standardised, bottle sizes and CBD levels are all dependant on the company, so it’s hard to truly know if the product you’re using is good value for money. Endoca have created this CBD calculator, which helps you work out the monetary amount per milligram of CBD, which is important when trying to decide between products.
4. Are there clear quality standards in place?
Without clear quality standards there is no guarantee of safety in the product you are purchasing so make sure you ask the company for proof of the quality standards they have in place. Ask if the products are Good Manufacturing Practice (GMP) certified (when products are of pharmaceutical quality) and for any other certifications they hold that show their product is safe for consumption.
5. Is their website content clear and informative and do they have many online reviews?
As CBD is a new industry for many people, there is an abundance of misinformation online, including information that you can find on many CBD company websites. Unfortunately, it’s very easy to buy CBD in bulk and rebrand it as your own, so if the company you’re buying from provides limited information, or is not clear in giving you all the tools you need to make an informed decision or purchase, steer clear. Also, finding online sources of product reviews is vital to hearing about the experiences of others using the same products.
You can read more about cannabis in our Cannabis and MS Choices leaflet online.
In our latest guest blog, MSer Christian Rolfe talks about his new hand-controlled car and tells us what to expect from the assessment.
I've been on the Motability scheme some years now and in April 2018 I was driving an automatic with a hoist for our scooters. Normally when my licence expires I get a letter which I send back and a new licence arrives for 3 years, but this time I received a letter requesting I made an appointment for a medical to determine my fitness to drive.
The appointment was 10-15 minutes or so and I didn't get off my scooter nor was I examined. I was asked a few questions to measure my cognition. After the "physio" I was given 5 years on my licence instead of the normal 3.
Having already gone from a manual to an automatic 3 years ago because my left foot and leg was giving up, now my right leg was feeling icy cold and a bit painful. This started last summer in the boiling heat.
Having had 4 or 5 near misses, my partner and I went on a cruise to New York and back. On the drive home from Southampton, the M20 was shut and the Satnav took me to another road that it didn't recognise. I was forced to go down a very narrow country lane and I crashed the car. I was going too fast and my right foot was unable to control my speed and would not respond to hit the brake.
I decided to contact Motability to ask about hand controls. They gave me a number of a place that does driving assessments. I was worried about the assessment but it was totally fine. I was given the sort of examination a neurologist would and then I drove their car. The type of hand control I have and was assessed on was a ball on the steering wheel for steering with your left hand and a push-pull lever for acceleration and braking operated by my right – you pull towards you to accelerate and push away to brake.
The assessment is as straightforward as can be although my very good looking but not equally functioning legs did want to get involved. I was taken out for around 20 minutes when they told me I was suitable. I received the report in the post a few days later. I think it said "world’s greatest driver" but I could be wrong…
After the assessment Motability will pay for you to have up to 6 lessons with the hand controls but it's up to you. Anyone thinking about hand controls needs to do it. There really is nothing to worry about!
You can email our helpline team with any questions you may have about Motability or driving with MS.
In our latest blog, New Pathways Editor Sarah-Jane Lampe takes a look at the Autoimmune Protocol Diet (AIP) and shares this vegan Nightshade-free Italian sauce recipe to end Veganuary on a high!
Fancy adding more tasty AIP recipes to your kitchen collection? Read more in New Pathways Magazine.
Tomato sauce is a no-no on the AIP diet, but some meals simply scream for a big, bold red sauce. For the times when you simply must have tomato sauce, try this hearty “no tomato” red sauce.
1 (15-ounce, or 420g) can butternut squash puree
8 ounces (225g) cooked red beets, peeled and chopped
3 tablespoons (45ml) full-fat coconut milk
1 tablespoons (15ml) apple cider vinegar
1 tablespoon (15ml) coconut aminos
2 teaspoons (1.5g) dried basil
2 teaspoons (1.5g) dried marjoram
1 ½ teaspoons (9g) fine sea salt
1 teaspoon onion powder
1 teaspoon dried oregano
3 cups (700 ml)
Combine all the ingredients in a blender or food processor. Blend on high for about 30 seconds, until you obtain a smooth and creamy sauce. Check the seasoning and adjust the salt to taste.
Store in a glass container and refrigerate until needed. Reheat on the stovetop over low heat, stirring frequently.
The sauce will keep, covered, in the fridge for up to five days. It freezes well. Serve with basil zucchini noodles.
'I’ve had a wonderful two months since joining Sportability. I feel that my life is beginning to start again with my MS no longer being a brick in my pocket!'
That quote came out quite naturally in a casual conversation with Mandy, at one of our sporting events. As a former journalist it resonated with me because of its utter simplicity and total authenticity. I was a professional writer and yet I could never have created, or even imagined, such a complete and vibrant description that in just a couple of word encapsulates what Mandy obviously felt as the restraining, the weighing down, effect of multiple sclerosis (MS).
Inspired by this we have recently been gathering simple profiles from various people who enjoy our events and activities. These are unscripted self-written comments, devoid of PR frippery and spin, but chock full of sincerity and an earthy originality. The results are truly revealing.
How about this as a powerful message from Roger, a 65 year old living in the Midlands. 'With MS there are two ways you can go, either switch off and wait for a cure or you can find a different way of living your life. Like a river finding a new course. Before my MS I was working 80 hours a week and doing very little else. Since my diagnosis, I have travelled more, had more fantastic experiences, a lot of them with Sportability, certainly more than I ever would have had without my illness.'
Or the frank, honest, open-ness of Jen from East Anglia. 'Prior to suffering with MS, I had always been an outgoing, confident, professional individual. However, I became a very different person as my symptoms took hold, robbing me of all of this, as well as my identity. I found myself experiencing the very unfamiliar feeling of vulnerability, having a total lack of confidence and self-worth. My world became a very small place.'
But she goes on to reveal something of an MS metamorphosis. 'Then I was introduced to Sportability and wow, I haven't looked back! This enabled me to experience a variety of activities, such as gliding, quad-biking and sailing. It's a wonderful feeling to be in an environment where you feel safe, where you are accepted as you are and where people focus on what you can do, and not what you can't. I come away from a Sportability day with a big smile and feeling emotionally energized. My confidence has grown as I realise that there is an abundance of things out there that I can in fact do!'
They are only words, but how meaningful and heartfelt they are. And what insights and, dare I say it, inspiration, they evoke. It is the things that people say, like this, that make us do the things we do.
David Heard, Chief Executive of Sportability
Photo: David Heard and Trish Deykin. At the recent 2018 Sunday Times Sportswomen of the Year Awards Trish received The Helen Rollason Award for Inspiration. She is the current Triathlon European Champion, and has been for last two years. She is also a former World Champion.
I came out of a meeting in mid-January and had a text message from my good friend and Tysabri buddy’s husband, Alister... ‘Are you up for this?’ he said, sending a link to the Race to the King event, a 53 mile trail ultra-marathon.
I’d been running for about 8 months and had a few 10k and a half marathon runs under my belt, including the Brighton Marathon. I thought about it, albeit briefly, and replied ‘You know what? Yes! This sounds fun, happy to do it in a day too’. There was an option to do it over two days, but that was far too sensible…
And then I kind of forgot about it. I ramped up my training for Brighton and managed it in 4hr 30m. It was tougher than I’d hoped but I didn’t stick to my race plan and went too fast too soon. Alister assured me that a marathon was far harder than anything else I’d do… I was doubtful.
I signed up for a walking event, which the organiser agreed I could run if I was fully self-sufficient. So I ran 45km of trails on my 32nd birthday. Running offroad was a real eye opener. It took far longer than I expected but was really enjoyable and, as the only runner in a walking event, I won!
Alister was following a 12-week training program, but I was struggling. With a full time job, three dogs, multiple sclerosis (MS) and awful time management skills, I wasn’t getting the miles in. Seven weeks before the ultra, Alister and I hadn’t even run together – how were we going to manage 53 miles in each other’s company? I was starting to worry. As if he read my mind, Alister invited me to join him on a 13.1 training run around town. It went well but there was work to do. Not long after that, I managed to start using the program. It meant some early mornings and late nights, but soon I was racking up 25-40 miles per week, and Alister and I were running every Sunday together, exploring the South Downs between Chichester and Eastbourne.
At this point we discussed fundraising. We should raise some money, but who for? I volunteered that I would like to raise money for MS-UK, and Alister could join me or choose another charity if he wanted to. I explained that the MS-UK website and chat rooms had been beneficial for me post diagnosis, and I’d like to support them. He was keen to join me, and the race begun!
Both of us are fortunate to have very supportive families, friendship groups and colleagues, and our JustGiving pages started seeing a lot of visitors. Whilst my close colleagues are aware that I have MS, it’s not common knowledge, and as I’m field based, I often don’t see people for months. Whilst my email was nonspecific, my JustGiving page was honest and held nothing back, which felt liberating. The email went to the entire business, and I let out a deep breath. Within minutes my inbox was full of kind, generous and supportive messages, some from people I knew reasonably well, and others who I’d only met once. It felt amazing.
Alister and I went on to raise around £1,700 each and proudly wore our MS-UK running vests as we took on the ultra-marathon on 23 June 2018. We set off from Slindon at 8.15am and ran (yes, we were still running) across the finish line in Winchester at just gone 10.30pm. It was an amazing experience and I genuinely enjoyed every minute of it. Our time was a little slower than hoped, but we had a headtorch malfunction, and both agreed we need to coordinate our toilet stops better in future. And yes, there is a ‘future’, Alister and I have only managed a few Parkruns together since but will be tackling at least one ultra-marathon in 2019 and aspire to complete a 100 mile ultra at some point.
Adjusting to being diagnosed with an invisible illness can be really tough. I have bad days, but with the help of amazing family and friends it’s a whole lot easier. If you know someone with an invisible illness, you can help. The problem is, sometimes it’s difficult to know what to say or do. So here are my top tips!
If someone confides in you that they have a condition, they’re giving you a licence to talk about it. Thank them for being open and then ask them how it affects them. It means a lot when someone asks questions to understand the condition more, rather than just trying to avoid the subject. Find out from them what they need from you to help them day to day. Chances are they don’t want to be treated any differently, but there might be something that you can do to make their day easier.
2. Check in!
I go totally off grid when I’m struggling to cope with my condition. I become withdrawn and you won’t hear from me for days. At some point, someone will notice that this is a bit out of character for me and check in. I’ll admit that I’ve not been ok and they’ll tell me that they are always there for me if I need to have a moan or sound off. Thing is, when you’re in that space, it doesn’t always occur to you to do that. Make sure you drop your friend a regular text to let them know you’re thinking of them.
3. Cut some slack
It’s typical that someone with a chronic condition suffers with some degree of fatigue. That means that even the best laid plans can go wrong if they’re just too tired to function. Be forgiving if they’ve cancelled that night out for the third time in a row.
4. Don’t assume
Every day with a chronic condition is different. Some days you can take on the world and on others you can’t get out of bed. Avoid making assumptions about what your friend or family member can do. Don’t stop letting them make their own choices and keep on inviting them to social occasions. Sometimes they will accept and other times they might politely decline. But they will always be grateful that you have let them make their own choices.
5. You don’t have to find a solution
With all the best intention in the world, we want to solve people’s problems. But if the top doctors can’t find a cure for the condition, it’s unlikely that you’ll be able to provide a solution yourself. If they want you to give a solution, they’ll ask for your opinion.
Ultimately, the best thing you can do is make sure that person feels loved and cared for. They need to still feel like a person, and sometimes the best way of doing that is by doing absolutely nothing differently. Nobody with a chronic condition will manage day to day in the same way. The only way to find out, is to ask.
If you would like more information about living with multiple sclerosis (MS) you can download our Choices leaflets for free.
Fatigue is one of the most common symptoms of multiple sclerosis (MS) and it can often feel overwhelming during the cold and dark winter months. However, with the help of the MS community, we’ve gathered together a few tips and techniques that may help you through!
Firstly, though it may seem counter-intuitive, moderate exercise has been shown to improve resistance to fatigue. Now, we are by no means suggesting that you run a marathon, but a small amount of regular walking, swimming, or yoga, among many other options, could make a positive difference in the longer term. For more information on exercise, please see our Choices leaflet.
Looking after your mental wellbeing is also important. Activities like meditation, mindfulness and relaxation, as well as just being aware of the need to factor in time for rest, are tips that the MS community have shared with us in relation to managing symptoms. This self-aware approach is particularly useful when it comes to fatigue because taking the time to plan activities and daily patterns, as well as breaking down tasks into manageable chunks, can really make things less daunting on a day-to-day basis.
It may seem like a bit of cliché, but we can hardly talk about the usefulness of exercise without also talking about healthy eating. It is well known that eating a balanced diet helps people to maintain good health and feel their best, while poor diet can lead to fatigue. This is no less true when it comes to MS. Supplements, including B12, Co-enzyme Q10, Vitamin D and Omega 3, can also contribute to reducing fatigue, though we suggest speaking to your GP or neurologist before taking anything new. For more information, please see our Choices leaflets on Diet and nutrition and Vitamin D.
Other therapies that some people with MS have found to be helpful include acupuncture, oxygen therapy, and Action Potential Simulation (APS) therapy. Oxygen therapy is widely used across the UK in the many MS therapy centres and those who regularly attend sessions have found that it can greatly improve fatigue levels. To find your nearest therapy centre, use our website.
You can read and download all of our Choices leaflets on our website.
MS-UK Counsellor, Louise Willis reveals what you can expect from MS-UK Counselling...
Multiple Sclerosis (MS) can present many physical challenges and some can be identified and treated by the medical profession, but what about the hidden emotional and mental challenges that can be faced?
MS affects around 110,000 people in the UK. Each person affected has a different life story, an individual set of beliefs and values, and ultimately a different way of dealing with diagnosis and the changes that MS can bring. There is no right or wrong way forward, but sometimes some extra support can be invaluable at any stage of MS. From diagnosis to new changes and developments, MS-UK counsellors are here for you every step of the way.
One of our trained counsellors will call you at a time that is suitable for you. We ask that you are alone at this time and in a quiet, confidential place and that you are comfortable as the call can take between 30 and 45 minutes. If you are unable to answer the call straight away, we will always ring back around 5 minutes later.
Yes, counselling is a safe and non-judgmental space for you to talk about any worries you might have about any aspect of your experience with MS. Any information we take down is kept on our encrypted servers here at MS-UK and is not passed on to any third parties unless you ask us to.
We will only break confidentiality in the event of a safeguarding issue which would mean any form of harm to either you or someone else.
We will ask you about what is bringing you to seek counselling and about any mental health issues you may have. We will also ask you what times and days are best for you for your counselling sessions. They will be at the same time and day each week for six weeks.
If you are unable to make one of your sessions, let us know as soon as you find out and we can reschedule. However, if this is within 24 hours of the session you may forfeit the session as all of our counsellors are booked in advance.
After your assessment we will pop a counselling contract in the post, or send it via email for you to sign ready to speak to one of our specially trained MS counsellors.
We look forward to meeting you!
A year, wow, how time flies. At the time of writing this it’s exactly a year since I was diagnosed with multiple sclerosis (MS). Before that day I had no idea what MS was. Now all I think about is MS. Instead of thinking about what I want to do in 3 years time I’m now planning what I can do in 3 hours time. Every day is a different day. On a Saturday night I’m looking forward to my run in the morning and pumped up ready to go…then the morning comes. It’s Sunday. I’m struggling. Time to change my plans.
That is one of the things I’ve learnt most about MS. I’ve always made plans months in advance let alone weeks, but now I look at this in a new light. At first if I missed a plan I would sink to a new level, I felt like MS was controlling my life, I felt that it was the end of the world. Now I look at it and even though I’m still upset, I remember it’s only one day, they’ll be others I can attend. If you have amazing friends like I do then they’ll understand, as long as you let them. This brings me on nicely to what else I’ve learnt.
Talking. Talking about my MS, my depression, my everything is possibly the best thing I’ve learnt since being diagnosed. You shouldn’t have to bottle up what’s inside, it’s scary telling people but how else can someone help you? I’m not afraid to say that I had counselling. I’m not afraid to say I went home and cried after some sessions. I’m not afraid to say it is one of the things that’s helped me the most. It gave me the confidence to speak to my family, my friends, my girlfriend. It’s why I’m happy to be so public about everything I’ve been and am going through! Because of this they all understand what’s happening with me. MS doesn’t just affect the sufferer. I know that people have cried over my diagnosis and the affect it’s had on me, but I also know that being open and approachable about it has helped them. If I had to give one piece of advice to anyone suffering with something it would be to talk about it.
Do you have something you love to do? Love to see? For me fitness is the one thing I love to do. I may complain about running on a cold Tuesday night in Swindon, or a rainy Colchester morning, but once I’m out there I love it. Ok I lie (don’t judge me) but I love to read too. This year I’ve read over 30 books and they’re not just tiny books either! Escaping in to another world, furthering my knowledge in something, allowing myself to become fully immersed in a book has helped me through this year. Find something you love to do. Find something you want to love to do. Hobbies, interests, whatever it is, give it your all and you’ll appreciate it afterwards.
A year on and I still don’t really know what MS is. Does anyone?! I ask numerous silly questions multiple times and I will carry on doing this for as long as I live! One year down and hopefully many, many more to come. I’ll get there one day, maybe come back and ask again next year?!
MS-UK Counselling is a confidential service open to anyone living with MS. You can talk about your thoughts and feelings with a qualified professional that also has an understanding of MS.
It’s been a good while since I wrote. I’ve wanted on many occasions but life has been against me. When you live with a chronic illness, it's a constant uphill battle but when life chucks in more challenges, you just want to scream!
It’s that time of year when bugs bounce around. You do things to help to escape illness. I’ve chucked orange juice down me for the hope of that extra vitamin C prevents any illness but I’ve still sounded like Darth Vader. Little man’s nursery has been a hive of germs. You want him to go but battling against bugs is a neverending game. Me, then little man, me again. I think it was tennis germs. My immune system is even more shot to pieces since MS.
My symptoms flare up when I’m sick, especially my fatigue. The MonSter comes back with a vengeance. Big effort! You just want a break. Last weekend, I woke up to not being able to walk. I bought a rollator/wheelchair combo as my scooter broke recently (another story). I needed a back up plan. Good job I did have one. Little man’s daddy wheeled me into church as I didn’t want to miss Remembrance Sunday service. I’ve got a poster used in the war “Keep calm and carry on”. You just remember what others have done to make you, your family and friends safe, and it all blends into perspective.
MS is a pig of a disease. When people ask, 'How are you?' and you reply 'OK', it’s because in the past replying with the truth doesn’t help many and it is easier, less effort to say 'OK'. Everyone has their challenges. You don’t know what they are. That’s the biggest lesson I’ve learnt from having MS. Simply be kind to others. You don’t know what sh*t they are dealing with.
I was recently given some drugs for my MS bladder as an interim solution as I’m waiting for Botox. I had a bad reaction to them, so no longer taking. I should have known as every drug I’ve taken has caused me medical grief. To add insult to injury, we’ve had home leaks to contend with. As the phrase goes, 'It never rains, only pours'. Little man’s daddy asked, 'Is that a joke?'
As you can read it’s been pretty interesting. Maybe I should rename my blog to “ poorly pi**ed off parent”. When I’m feeling rubbish, I think of that war poster “ keep calm and carry on”. That is my option, she says coughing again.
You can read more from Joanne on her blog, Poorly parents.