I am pleased to say New Pathways issue 108 is now landing on doormats across the country! As always we have a packed issue, full of all the latest multiple sclerosis (MS) news and research, including drug updates and the latest cannabis study findings.
As the sunshine begins to make an appearance, we get topical with lots on vitamin D. MSer Ian Cook puts vitamin D tablets and sprays to the test (see page 30) and Kahn Johnson reveals what happened when his vitamin D levels became toxic on page 16.
Also in this issue, MS Nurse Miranda Olding discusses sexual dsyfunction and what can be done to help (page 14) and we have the big interview with the star of Channel 4 programme 'The Search for a Miracle Cure' Mark Lewis (page 24).
I hope you enjoy reading this issue, and please do email me your comments and letters to email@example.com.
Editor, New Pathways
P.S. Don't forget New Pathways is available to read on the go. Download the My MS-UK app from the App store on your phone or tablet device today!
Yesterday evening, BBC One’s The One Show aired the story of one MSers decision to end his life at Dignitas in Switzerland.
Colin Campbell, 57, from Scotland was diagnosed with primary progressive multiple sclerosis (PPMS) in 1995. In the knowledge that his MS would get progressively worse he had decided that “another winter would be unbearable”. He had chosen 15 June as the day he was going to die. He didn’t want to be alive and more disabled than he is now. His story even made it onto a local Scottish news channel. Little did he know that just half a mile down the road from where he was living a stranger was watching - another MSer Rhona Tynan. She had watched his story and decided that she “couldn’t let this man go ahead and do this without trying”, so she phoned up the TV station and got in touch with Colin. She asked him to come and see her and how she was coping.
“I just wanted to see if I could help him see if things could be better,” she said.
Colin did go and see Rhona and they formed an unexpected friendship. After spending two “enjoyable” days together and after discussing things with her Colin decided to cancel his 15 June appointment in Switzerland. Seven months later, Colin discussed how meeting Rhona had changed his life. He said: “My flat had become a prison. I couldn’t get out, there were two flights of stairs. You lose the will to live.
“No one had explained to me what options there were,” he explained. “If Rhona hadn’t have contacted me that would have been it for me on the 15 June. It would have been all over,” he added.
Rhona said: “It became very clear to me that Colin didn’t have the correct support for quality of life.” “I know a scooter gave me quality of life because it allowed me to get out and about. Colin didn’t have one and he didn’t know how to go about getting one.” So they decided to have a day out together trying out and testing some scooters. But getting a scooter was just the beginning. He also found out that he was entitled to a ground floor accommodation and 24-hour assisted living. Inspired by her relationship with Colin, Rhona has now set up a networking group for other people who have found themselves in a similar situation. Rhona has also recently been to Mexico for stem cell treatment and is seeing positive results. She talks about her improvements on the show and has most recently managed to walk 50 steps while holding her husband’s hand, something she wasn’t able to do before the treatment. If you missed the show, which aired at 7pm on 14 Feb 2018, and would like to watch the full interview visit the BBC iPlayer and scroll through to 32:40 minutes. If you would like to read more about assisted dying, subscribe to New Pathways magazine issue 107 and read a great piece written by Journalist and progressive MSer Ian Cook, as he discusses your right to die. New Pathways is a magazine for people living with MS. The much loved title has been running for 25 years and is a great source of information and support for many MSers. To subscribe click here, or call 01206 226500.
Media lawyer, Mark Lewis, shares his experience of living with MS in the Channel 4 documentary, ‘In search of a miracle cure’. He visits Jerusalem to receive experimental stem cell treatment as part of a trial that could alleviate his symptoms and slow the progression of his multiple sclerosis (MS).
The documentary reflects various aspects of living with MS, including the changes it can bring to one’s lifestyle and the emotional turmoil it can cause. Mark’s perception of his MS is that it is something that he can either win or lose, and he is clear that he is going to win.
How do you view your MS? Do you feel that it is a battle that you’re aiming to win day after day, or is this something that is part of you that you don’t need to fight? Perhaps your MS is benign and does not influence your life? There is no single MS experience and each person might find that their emotional responses vary over time.
There are times when your MS might feel overwhelming and you might be frustrated at not being able to control what is happening to your body. MS can also be exacerbated by stress and lead to life-changing decisions such as giving up work. People sometimes struggle to cope with the reactions of their friends and families. Our counselling service can offer you support.
MS-UK Counselling is a specialised service for people with MS. All our counsellors are BACP registered or accredited and have training in working with people with MS. Our sessions are delivered over the telephone so counselling is easily accessible to everyone. Please see www.ms-uk.org/counselling for further information.
Mark Lewis is the famous lawyer who took down one of the world’s most powerful media moguls, Rupert Murdoch. The show, titled ‘The Search for a Miracle Cure’ is set to air on Thursday 23 November at 10pm.
Filmed over the course of a year with exclusive access, film makers follows the progress of high-profile media, libel and privacy lawyer Mark Lewis as he embarks on revolutionary stem cell trials for multiple sclerosis (MS).
At the age of 25 Mark was diagnosed with MS. There is currently no cure and over the last few years Mark’s condition has worsened.
Now 50, Mark first came to the public’s attention as the lawyer who represented Milly Dowler’s family, and more than 180 hacking victims in the News of the World phone hacking trial – a victory that was followed by the demise of the newspaper. However, stress worsens the symptoms of MS and Mark’s high-profile law career and battle with the tabloids has put his MS on fast forward.
This summer, Mark began a journey into the unknown when he became Patient 31 of 48 in a revolutionary clinical trial, conducted at Hadassah University Medical Center in Jerusalem by Dr Karussis. The trial is working towards finding a way to halt MS in a bid to help Mark and the estimated 2.5 million people with MS worldwide. Its cutting edge science with huge promise and researchers hope findings could positively impact other neurological conditions such as Alzheimer’s and Parkinson’s disease, and for those who have survived stroke.
Mark believes this journey to Jerusalem is his last chance as he says, ‘My life is like an egg timer that the sand’s dripping through and the sand’s nearly finished. I want the Doctors to turn it round for me as I know that if someone doesn’t flip it round, that sand is slipping out.’
Here at MS-UK we’re hopeful yet cautious when people talk of ‘miracle cures’. We’ve read the positive results published so far for this trial and will be sure to tune in to hear Mark’s experience. We would also love to hear your thoughts, simply email firstname.lastname@example.org.
I just wanted to say a big thank you for supporting MS-UK during MS Awareness Weekby adding my #SmilesWithMyles twibbon to your social media profile pictures!
Over 300 of you lovely people added my twibbon, and it all helped us to spread a positive message throughout the week – thank you!
MS-UK published lots of information about multiple sclerosis to celebrate MS Awareness Week, including Samreena’s real life story about HSCT, Taflyn’s story about living life to the full and an infographic about the invisible symptoms of MS, so do take a read of the MS-UK blog.
If you missed last week, you can sign up to the MS-UK e-newsletter to stay up-to-date about future campaigns such as World MS Day.
Big bear hugs!
Myles, the MS-UK mascot
As Samreena Kamran from Birmingham celebrates her one year anniversary since having HSCT treatment in London, she candidly reveals what life has been like since...
The moment I found out I had been accepted to have HSCT (Hematopoietic stem cell transplantation) treatment was surreal because I knew that things where about to finally change, even though I still didn’t fully understand what the treatment would involve. All I truly knew was that if I didn’t have chemotherapy I wasn’t going to find the cure I was looking for.
Now I’m one year on from having that treatment and I’m living my life. Since having it people have asked me, what are the negatives of having HSCT in the UK? To be honest I don’t think there were any negatives. I look at the whole experience as a positive and the only negative really is that no one can say for sure what date you might go in and actually start your treatment, they can only give you a rough idea. It’s all to do with the availability of beds. Things happen, they change and people who are more seriously ill take priority over you because although you have MS, it’s not a life threatening illness.
One of the most popular questions I’ve been asked is did my treatment go smoothly? Well the answer is probably not. I’m not known to do things smoothly. I became ill shortly after returning home and developed sepsis, for which I had to be hospitalised and treated. I just had to put my trust in the professionals.
I’m not going to lie, the last year has been tough. I was walking better with my crutches back in 2013 when I first discovered HSCT but I was told by my neurologist that it wasn’t for me. Because I waited two years before finding out more and perusing treatment, more damage was done. It does bother me that I’m still not walking, but my physio says nothing will ever be good enough for me, I guess I’m tough on myself. However, that’s also what keeps me going, I will walk. My physio gave me a picture of a quote, which sums up my situation right now. It says: ‘Strive for progress, not perfection’. When he gave it to me he said, we’ve just got you walking up the steps, give yourself time.
I’ve also been left with some stiffness and spasticity, which the professionals are treating for me. However, I do believe that this can hopefully be improved over time because the brain is able to rebuild its neurons. I’m using my mobility scooter a lot at the moment because I’m trying to give my body time to recover from the treatment and all of the drugs. I believe, as with anything else in life, there needs to be a positive mind-set, and that’s why I believe things will get better.
There have also been lots of good subtle improvements that have happened along the way, but the best thing is that my MRI scans now show no more disease activity or lesions. My MS is stable. It’s so nice to know and hear I’m not going to get any worse. I used to worry about my care and what home I would go into because I was declining so rapidly, and now that’s not going to happen. Now I can plan and live my life.
I would definitely recommend HSCT to anyone with MS. I think my situation and progress so far shows that the sooner you have this treatment the better.
To read more real life stories from other MS patients, download issue 96 and 102 of New Pathways magazine.