My MS journey

Linda Tovey on 46 years with MS and how she’s still discovering new things to help

It was 46 years ago when I had my first symptoms of multiple sclerosis (MS). On the way to the park I noticed one eye was slightly blurred and cupped the other eye to see the difference. Something was clearly wrong. I went to see my GP and saw a concerned look in his eyes. He sent me straight to Moorfields Eye Hospital. Eventually it was diagnosed as optic neuritis. Due to other symptoms, including a weakening of my right hand when picking up the telephone and tingling on my left hip I was referred to the National Hospital for Neurology where a lumbar puncture was arranged.

In those days, 1978, I was not given a diagnosis. After returning for check-ups to the hospital for the next couple of years I finally plucked up the courage to ask the neurologist. At the time he said, “if you are asking me if it is multiple sclerosis, then the results of your tests do indicate that, but we don’t like telling people as they often imagine the worse and worry about being in a wheelchair.”

Now I could do some research and that was where I discovered ARMS (Action for Research into Multiple Sclerosis) who became my resource and part of my journey. Their information and support were extremely useful and I took part in one of their research programmes into diet and fats as well as seeing Julia Segal who was a counsellor for ARMS at the time and had written a paper on the emotional reactions to MS that was very helpful. It stopped me running around like a headless chicken looking for cures! Each of our symptoms and outcomes are so different and those of us that have been reading New Pathways for years know how many different treatments, diets and alternative therapies there are that may or may not help each individual.

Trying holistic management

I used many alternative therapies, including the Alexander Technique, massage, reflexology, chiropractic and osteopathy in an attempt to remain as healthy as possible. I tried various dietary approaches too and had my gut microbiome tested. I went to Slimming World and lost three and a half stone and ate well, especially salads and vegetables and my home-made sauerkraut. This has helped a lot and made dressing and bending much easier. However, it was my father who brought to my attention the effect of cooling on a racing driver recovering from ME fatigue that caught my attention. As a result I threw myself in a cold bath for 20 minutes and was amazed at how energised I was for several hours afterwards with improved movement and sharper vision. As a result I purchased a cooling system by MediCool and that pumped iced water around a waistcoat that I wore for 45 minutes each morning to get the same effect.

Supported independence

I was still walking for the first 24 years but would get dropped foot and trip or suffer with fatigue. Over time I started to use a walking stick, and then needed two sticks and an electric scooter for longer walks. Now I use a power chair all the time and drive an adapted drive-from-wheelchair car. I feel lucky that I live in an age where these supports exist and enable me to remain independent. I swim once a week, which keeps me supple, at my health club, who have a hoist to lower me in, and I manage to walk up and down the length of the pool holding onto the side for support – yet I cannot take more than one step when out of the water! I have always put this down to the cooling effect of the water and the water itself helping me move.

The Mollii Suit

Remaining independent has always been my priority. I live with my civil partner Sandy and Labrador Bailey. It was Sandy who brought the Mollii Suit to my attention a year ago. She saw the effect it had on people by watching YouTube videos and then on the BBC news. The suit’s soft jacket and trousers deliver a gentle sensory-level electro-stimulation to muscle groups, programmed to each person’s needs, and helps to improve movement and ease pain and spasticity in a variety of neurological conditions including MS.

It took a year to get an appointment for an assessment with Richard Welch of Remotion Ltd. I had wondered whether I would be deemed too old at 73 to be offered an appointment but it turned out the delay was due to the high demand the BBC programme had attracted from the public. So I arrived at the MS Therapy centre in Peterborough where Richard had hired the gym for the afternoon. He asked me to do various exercises with my upper body seated and then standing which I could only do if I had something to hold onto. Then there were the parallel bars and I managed to stand up and take only one step before my right leg was completely stuck and couldn’t move.

After the assessment of my movement, I then put the suit on with Sandy’s help and stayed sitting with it on for one hour. The only thing I felt was a slight tingling on my right arm so I knocked on Richard’s door to ask him if he thought the suit was working as I couldn’t feel anything else. He smiled and reassured me it was fine. When the hour was over, I went into the toilet to change back into my clothes and said to Sandy, “this hasn’t worked, I don’t feel any different.”

Emotional moment

How wrong I was. I returned to the gym to the parallel bars and was amazed I walked up and down managing eight steps. Sandy was silent with tears in her eyes. We were both amazed. Richard pointed out that this was just a taste of what improvements may be possible as the effects are accumulative. It is recommended that the suit be worn for one hour a day for one week and thereafter every other day. The results can last between 24 and 48 hours so he asked me to note down what I noticed on my return home and to let him know.

My upper body was stronger and more upright when sitting at our dining room table for dinner and the same when I leaned over the kitchen sink to wash up. Later in bed, I was lying on my back reading when I realised my right leg had not shot out and gone rigid and tight as it always did these past 20 years. Wow, what a bonus that would be if the suit could help with spasticity. I might be able to do breaststroke without my right left going stiff and rigid in the water! I am now looking forward to the arrival of the suit which is on order and excited to see what improvements I can build on. For many, sadly, the cost maybe prohibitive unless you have a way of raising funds. To hire the suit for a month costs £550 with a holding deposit of £2,000, or you can purchase the suit for £5,500.

I hope to hire the suit for one month before making my final decision of whether to purchase it or not. I am very excited about its potential and will let New Pathways know how it develops in time. Fingers crossed, watch this space!

You can read the next installment of Linda’s trial with the Mollii suit in the next issue of New Pathways magazine. Plus, you’ll get a free RADAR key and Just Can’t Wait Card when you subscribe! This gives you access to 10,000 locked disabled toilets in the UK – peace of mind for your bladder and bowel issues when out and about. Click here to subscribe to New Pathways magazine!