Here are some examples of how some of our members have learned to live with their condition and how it has affected themselves and their families.
It was around 2005 that I started experiencing stiffness and weakness in my hand s and legs. I didn't know what it was but I had a fear of it being MS. It was only when I dropped the pressure cooker on the floor that I knew I needed to get it checked out.
It was 17th April 2007 that It was confirmed I had an unwelcome visitor who was staying with me for good. Relapsing Remitting Multiple Sclerosis!
To say I was devastated was an under statement !! For many years I didn't come to terms with MS.
In September 2017 after speaking with my amazing and supportive Husband Frank, I decided to go and see what the MS Centre was like. I must admit I was very nervous and hesitant going through the door for the first time but I have never looked back.
All the people are lovely, very supportive and it's somewhere where you can either have a bespoke session in the gym, a therapeutic massage or just have a drink and a chat.
I have made many new friends with different stages of MS and other neurological problems and since starting at the Centre I now realise that I am not alone coping with this disease.
Gail Hern - 01/06/18
I always thought that I was just clumsy. For many years I dropped things, banged into door jambs, looked like I had been drinking when I hadn’t. Phew! Couldn’t figure it out.
My left side was becoming weaker, my left hand didn’t do what it was supposed to do and my left foot kept tripping me up. I had numbness and tingling all the time and was eventually referred by my GP to get some Physio to try to strengthen my muscles up. After two years of unsuccessful physio, including traction and acupuncture, I was referred to a Neuro Physiotherapist and then onto a Neuro Consultant.
I thought it might be MS but tried to ignore it until after the tests. The Consultant arranged for me to go to the Walton Centre in Liverpool for a whole day of tests. He thought it would get it all over with at once. Oh it did! I had a CT scan, Lumbar Puncture, Nerve conduction tests, muscle conduction EMG tests, Visual evoked potential test, bloods, etc, etc. You name it, they did it!
That was in February 2006. I had an appointment to go back to the Consultant in October 2006 and as I didn’t hear anything, I thought my problem must be the trapped nerve in my arm as I initially had suspected.
So I went off to see the consultant 8 months later and he promptly said as I sat down, “well Wendy after studying your tests I have diagnosed that you have MS. This is the best result we could get as we were testing for a brain tumour, motor neurone disease and other problems.”
I was in shock! I couldn't believe that I hadn't been called back earlier as this was so serious in my view. I was then told that I have primary progressive MS and there is no treatment for it. I was told to come back and see the consultant again in one year.
To conclude, I had nowhere to go. I was told to go to the Walton Centre to see the nurse but the main thing I got from her was a leaflet. She arranged for me to attend in Liverpool a “Newly Diagnosed” half day session which was very scary.
I felt a bit lost. So, I researched everything I could and after a while, I joined an MS gym session in Warrington Hospital where I met some ladies from the Warrington MS society. They were really nice people there and I made some great friends but there was no real hub to meet up with people, just a monthly social or coffee morning or lunch here and there.
I found our wonderful therapy centre in Wigan through another lady who has MS and I have never looked back . I come here now at least twice a week and I get so much help, so much friendship, support and common ground. I now manage my MS as well as can be expected and share my own experiences with everyone along the way.
Wendy Welch - 02/06/2018
Ray's Story (part 1)
April 2013 reflections
Hi, my name is Ray and I just hope my story convinces you that there is light at the end of the tunnel if you really want to find it, but sometimes I feel it is akin to finding a needle in a haystack!
I was diagnosed with MS in April 2012 after noticing weaknesses along the right hand side of my body during the Autumn 2011. I was a fairly active guy at the time enjoying a variety of outdoor activities and was initially convinced it was just down to neglecting my training and/or reaching the old age at 54!
But, following repeated visits to my GP, Neurologist, countless blood tests, a MRI scan and Lumber Puncture matters were beginning to look bleaker by the week.
I was getting weaker and the dexterity of my right hand was giving me grave cause for concern. I could hardly write, hold a spoon, button my shirt or tie my shoe laces. This meant not only were basic domestic chores difficult but I was unable to continue work as a Surveyor.
I was very frustrated at what was happening and this led me to the internet for possible causes and remedies. It is understandable now why my neurologist was reluctant to arrive at a premature conclusion, but my own research pointed to primary progressive multiple sclerosis (ppms). I had read the excellent book by Professor Jelenik ‘Overcoming Multiple Sclerosis’ from cover to cover in January 2012 and was fascinated to discover the possible options available. Matters which particularly interested me were those which I could control, such as diet, exercise, reduction of stress and improved sleep – employing all or at least some of these surely could not do me any harm? Would the taking of drugs help me – debatable, I thought.
Nevertheless I followed the neurologist’s suggestion and took a prescription drug (baclofen) for three months to ease the growing weakness – this period I can truly say were the worst ever in my life. My relationship with my lovely girlfriend was deteriorating rapidly and was then terminated, I was attempting to solve the oh so complicated benefits system, becoming suicidal and breaking down in front of family, friends and neighbours – I put this down to rapidly progressing MS symptoms, I was literally spiralling out of control. In one foul swoop this MS had wrecked my relationship, stopped me working and destroyed all matters which I truly enjoyed in life.
The big turnaround began when I weaned myself off the medication, I decided that I wanted to take control, there didn’t appear to be much to lose. The very words my neurologist uttered to me on diagnosis “live life to the full” sprang to mind.
So, I decided to be more active with people who would recognise my trauma. The first point of call was my local Wigan MS branch. The likes of Carol (Critchley), Tracey (Wadsworth) & Janet (Anderson) were particularly helpful in offering support pointing me in the direction of counselling (Emma Clegg) and Pilates (Vikki Cork). None of this would have been possible if I hadn’t made the effort to attend one of the Branch coffee mornings at The Mount, Orrell, Wigan.
At another coffee meet I met another MS sufferer Yvonne (Slater) who introduced me to Tai chi. All of a sudden my week was becoming busier and busier, I had less chance of feeling depressed and instead looked forward to a programme of activities. In-between these I was fortunate to have my mind focused with ‘Ginny’ a glorious Black Labrador puppy who I bought soon after being diagnosed with ppms. Through her I began to meet countless numbers of pleasant enthusiastic dog walkers and to this day she brings a smile to EVERYBODY’S faces.
Yes, I still suffer from fatigue and wondered what I had done to deserve such a chronic illness from time to time, but gradually I have realised that this journey has brought new people and activities into my life which would not have been possible if I was working full time. My goal is to enjoy life as much as possible and to help others do likewise, especially those diagnosed with MS. To this end I have recently joined the West Lancashire MS Support Volunteer Team to assist both newly diagnosed and existing people with MS. Until we can find a cure or at least make living life with MS more acceptable I do think this is the least I can do to help.
So, after being so, so depressed and virtually finished last Summer I am now getting back to being my chirpy self and have a much more positive outlook on life. Believe it or not, like some miracle, I am getting physically stronger too – yes, I can now tie shoe laces, shirt buttons and don’t have my cornflakes falling off my spoon so often, is it due to luck or support from the Branch and self-help? I’ll let you decide, but believe me ……. that light at the end of the tunnel is getting brighter and brighter by the week for me; I hope it does for you too!
I hope to see you around sometime, maybe with Ginny too!
Ray Chan - 05 April 2013
Ray's Story (part 2)
August 2018 update
Well another 5 years have passed since my last writings. Here is a look into my current situation.
Like many of you I have issues with my MS, probably too many to mention, which frustrate me no end. Probably my main difficulties are the result of upper limb spasticity another is the strange phenomena of needing to empty my bladder at regular intervals - knowing the quickest route to the nearest loo is now of paramount importance! Despite these setbacks, I near enough always find ways of resolving them – herein lays the key – we must have the fortitude to adapt to our changing circumstances!
Nutrition plays a massive part in my wellbeing. Little did I know beforehand about oxidisation of the body and the damage it creates! Unsurprisingly, many common traits of MS are consistent with oxidisation – look it up! My diet is now radically different to my pre MS days; I consume anti-oxidants by the bucket load!
Meditation is also very important to me. Also, exercise is another essential ingredient. Thankfully I have a very willing partner who trains with me at least two hours a day, every day, whatever the weather. She never moans and is excellent company and loved by everyone, her name is Ginny (see later). On her half day off each Thursday morning I pack in a gym session under the amazing Matt (Stott) at the Wigan Therapy Centre – the facilities here cater for virtually all levels of disability.
Undoubtedly, nutrition, meditation and exercise have been instrumental in keeping my body healthy and this in turn may have helped minimise aggressive damage by my MS.
Now the exciting part!
Five years ago very few (including me) knew about HSCT (Hematopoietic stem cell transplantation) but today this has, in many cases, been seen to halt MS progression. The main centres for treatment are in Mexico and Russia but its availability is slowly being made available in the U.K. I am aware of three people from the West Lancashire MS Group who have had this treatment completed within the U.K. I also know of two people (again in the West Lancashire MS Group) who have had their stem cells collected and are ready to have their stem cells transplanted back into their bodies at the Royal Liverpool & Broadgreen University Hospital, one of them is me!
Part of the HSCT regime I went through included chemotherapy to activate a high concentration of stem cells from my bone marrow into my blood stream; I did in fact have the chemo done twice! My hair fell out as was to be expected, but has grown back resembling something decent some 5 weeks on! At the time of writing my treatment has sadly been put on hold, I’m still to discover why and report back in due course.
Assuming the hospital re-commences the treatment, I will then undergo a much more robust treatment. This will involve more chemotherapy over several days which will wipe out my entire immune system. This is undeniably the most dangerous phase of HSCT since my body will be extremely prone to infection and all the undesirable effects this can bring to organs in the body. Following chemotherapy my stem cells (which are currently in storage) will be reinserted into my blood stream and to flourish. My anticipated stay in hospital is 21 to 28 days following which steady recuperation at home for up to 12 months is envisaged.
Evidence clearly shows that MS develops because our immune system is confused and attacks the brain. The basic idea behind HSCT is to re-boot the immune system; the old immune system which is attacking the brain will be replaced with a new one, without the rouge cells causing damage.
Whilst it is the Neurologist which diagnoses MS in the patient, they have little or no expertise regarding the immune system. The immune system instead falls within the realm of a Haematologist. Unfortunately evidence from numerous MS patients in the U.K clearly show Neurologists are still extremely sceptical about the use of HSCT despite its success rate abroad, in the longer term it is also much cheaper than existing DMT’s (disease modifying therapies). One day, hopefully sooner rather than later, these two professions will collaborate more readily for the most important person, the MS patient!
Since I have PPMS, the only DMT now available to halt my MS is Ocrevus (ocrelizumab). Trial results suggest a 15% chance of stopping MS in its tracks compared to 60 to 70% with HSCT. Also, HSCT is a one off treatment whereas Ocrevus is taken every 6 months
Although I’m hoping HSCT will possibly stop rather than fully cure MS, this in itself would be an amazing achievement. In time, once the MS is halted, the next stage for me would be remyelination of the damaged nerves. Already there are promising trial results in this field.
Whether I finish off the HSCT regime or change direction to Ocrevus, who knows? The fact is there is now hope, five years ago there was nothing!
Whilst my HSCT treatment is on hold, I like most of us, must continue to live to the fullest each day. This is where support is an essential ingredient. My greatest friend, confidant and pleasure without doubt is ‘Ginny’ my now 6 year old black Labrador. Little did I know how big a part she would play in my life, but she has and still is absolutely astonishing for me! She’s a qualified Therapy dog (PAT) too and regularly attends numerous nursing and care home establishments with me to cheer up the residents no end. She’s also very handy when it comes to fundraising at events!
Additional support and delight is gained on a weekly basis at the Wigan MS Therapy Centre. The atmosphere, smiles and camaraderie is second to none. The Centre has everything you could ask for – good parking, access, gym, therapy rooms, lounge and best of all a great bunch of people! I’ve already mentioned Matt earlier, but other key personnel are the likes of Heather, Tracey, Jim, and the fabulous therapists Nicola & Sophia – I only attend Thursday mornings so my sincere apologies to those who I’ve missed out!
So, I now have a completely new structure to my life; I may no longer be a Surveyor climbing ladders, or enjoying my passion as a Scuba Diver instructor exploring waters throughout the world, but who actually cares? Times move on, relationships and friends change and we must do likewise.
To end this post, I will categorically say that I am actually enjoying life once again. I am using the tools and knowledge available at my disposal; I sincerely hope these may help you too.
Best wishes and take good care,