Guest Blog – Helen’s DCM Story

Hi, my name is Helen. I live in Gloucestershire. I have been involved with Myelopathy.org for a couple of years and am the person who has been printing and packaging the new stationery items on the Myelopathy Shop, but more about that later.

Before I got myelopathy, I had always had an active lifestyle and was not one for sitting down. One of my favourite pastimes was DIY (not that I can anymore!). In 2003, I came across an article in a magazine about people who had built their own house. I thought that was a great idea! So, after a lot of discussion with my husband, we set about finding a plot.

We were lucky to come across a plot which was being sold in the beautiful Forest of Dean. An old lady had a huge garden which she could no longer manage and was selling part of it. We then found builders and other tradesmen. My husband and I did any work, which didn’t have to be done professionally, with a lot of help from family and friends. It was very hard work and we had to overcome many obstacles. It was a huge learning curve compared to the usual DIY that we had done previously! It took over two years to complete but it was worth it in the end and it is a nice feeling to know that we have created something that will be there for many years.

Before
After

I have always worked in customer service roles in various retail shops and call centres. For 15 years I worked for the Gas Emergency Service, dealing with gas escapes in various places, and it was sometimes quite difficult to give an engineer the directions to get to a gas escape in the middle of a field! When the call centre relocated around eight years ago, I decided I wanted to start working for myself from home so I used my redundancy money to set up my own printing business. I bought a couple of huge printers along with 60 rolls of paper and some ink and set up my online shop. I only wanted it to be a small part-time job but was surprised when it grew quickly and within a couple of years, I had to run it full-time as it was so busy and I was sending my wrapping paper worldwide.

Around 2018, I started noticing that life was becoming a little harder. I was getting tired easily and had pain in my neck and upper back. Everyday things like dressing and showering were becoming more difficult. I was dropping and tripping over things. I struggled to grip small things and my arms were getting weak. I carried on with life and tried to ignore it all, thinking maybe this was just signs of age (I was only 50 at the time).

Then, one day in mid-2020, I suddenly got an immense burning pain in the fingers of my left hand. Over the coming months, it got worse and spread up my arm to my neck and I developed Lhermitte’s sign (at the time I did not know of Lhermitte’s). I rang the GP a few times over the course of the next few months. I never got a face-to-face due to Covid, but I got all sorts of diagnoses over the phone such as tennis elbow, carpal tunnel and anxiety. In November 2020, a GP sent me for a nerve conduction test, which came back fine, so I was happy that it couldn’t be anything too serious and continued trying to cope each day.

In March 2021, I rang the GP again and explained that I still had all my symptoms and the electric shocks were now spreading through the left side of my body, not just my arm. He sent me for an urgent MRI, which I had three days later. Four days after the MRI, my GP rang me and said my neck was really bad and that I had to go in and see him to do some neurological tests. It was ridiculous that over all these months I had never once been able to see anybody in person. I went in, did the tests, and he told me he was making me an urgent appointment with a consultant. I was shocked and asked him if he was being over-cautious, stating that I was sure I just need some physio. He said that he definitely wasn’t overreacting, and I had to be really careful because even a big sneeze could paralyse me.

A consultant rang me three days later, booked me to see him the following day and said to prepare for surgery the next weekend. He could not believe that I managed to walk into his room the next day. At that time, I was still in shock and was not prepared for surgery so quickly so we made the joint decision that I would wait a few more weeks to get my head around it all. I saw my surgeon a few weeks later and agreed that I was ready for surgery and I was booked in for three weeks later to have ACDF C5/6, 6/7. I had issues at C3/4, 4/5 but it was decided to leave those at the time.

Surgery went well and I was so relieved that the Lhermitte’s sign was gone when I woke up. Unfortunately, my other symptoms – such as walking difficulties and poor hand movement – had not improved but I was told that the surgery was only to stop progression so it was no surprise. I was just so glad that I could now live without the fear of being in a wheelchair. My surgeon said that the other two levels would likely need doing within two years of the original surgery. I am now at almost three years and so consider myself winning at the moment!

After my surgery I started to google myelopathy and realised that I should have pushed the doctors to help me earlier, but hindsight is a wonderful thing. My husband had been made redundant at the start of Covid and we decided that he would not return to work and we would just continue to run the business together. I was no longer able to do the manual work so he took on that role and I took over just admin tasks on a laptop. He is now my unpaid carer.

I was spending a lot of my time researching myelopathy and going on the Support Group on Facebook. I started joining Esther’s Virtual Coffee Breaks and now attend almost every one of them. It was so reassuring to chat with other members who knew what I was going through. Family and friends have been very supportive but they just don’t understand it like other myelopathy sufferers do.

I started to chat with Esther privately. Amongst other things, I told her that I am on the committee of my local MNDA group but I am no longer able to attend meetings so I was feeling a bit redundant from that. In late 2023, we came up with an idea that could bring some much-needed funds to the Myelopathy.org charity.

Over the next few months, Esther, Iwan and I spent many hours discussing how we could do it. We decided that we could start to sell some myelopathy-inspired stationery in the store. At the time, I was only selling gift wrap but it spurred me into action to start making cards. We really wanted to get members involved and Esther came up with the idea of having a card design competition. We had some really wonderful creations made by people with myelopathy, as well as their family and friends. It has been a whole charity effort.


The products went live at the beginning of April and in the first month we made £70 for the charity. It is a wonderful feeling when everybody comes together for one cause. Please pop on to Myelopathy Shop when you want to stock up on your cards and gift wrap and let’s see what we can achieve together.