I’m excited to introduce you to Esther Martin-Moore. She is a member of our Support Group and came up with the idea of running a Virtual Coffee Break within the Support Group.
These have been such a great success that they now run three times a month to cater to the different time zones so our worldwide members within the Support Group can join in and take part in these sessions. They happen usually on a Thursday. So, if you want to join the Virtual Coffee Breaks then join our Support Group and keep an eye out for the links to join the coffee break room.
April and May Virtual Coffee Break Dates and Times:
- 14 April at 2pm GMT
- 21 April at 6pm GMT
- 6 May at 11am GMT
- 13 May at 2pm GMT
- 20 May at 6pm GMT
Moving forward, we will be using this space to share the key takeaways from the previous month’s coffee breaks. For our first blog, we thought it would be fun for you to get to know Esther better and hear what her journey with DCM has been like. So grab a coffee (or tea) as this is quite a long read, but we believe you will find it helpful and inspirational.
Please don’t hesitate to contact me if you would like to get involved with the Support Group or Myelopathy.org.
Hi, can you tell us a bit about yourself?
Hi! Sure, I’m Esther Martin-Moore and 49 years old. I live with my husband Kevin in Lincoln in the UK. I have 2 grown up children, who have flown the nest. I used to be in the world of finances. I was a Regional Director, working with over 1,500 staff and businesses. I was made medically redundant due to this condition in 2019. I was on sick leave from June 2017, as I could no longer do my role and drive thousands of miles each week.
Can you tell us about your diagnosis journey?
About 6 months before the journey started, Nov 2016, (just around the time I was getting married), I noticed tingling in my right hand and arm and was feeling like I had a burning sensation. I mentioned it to my asthma nurse on a review appointment. She recommended I see a chiropractor as she thought it was a trapped nerve. Every time I went to the chiropractor they would mess with my neck and every time it would make me feel worse. I was covered in bruises upon every visit. I was told that’s normal! So I continued with the treatment. I went to Hawaii for our honeymoon in May 2017.
My dream was to swim with turtles in the sea and to see a live volcano. But, I was struggling every time I swam. My right arm had shooting pains whenever I tried to use it. On returning home, I carried on but my husband noticed my head was tilted to the right side and if I straightened it, I was in pain. Then in June 2017, I collapsed after lifting my right arm up above my head. We went to the A&E on my GP’s advice as they thought I might be having a stroke as my right side felt numb and tingling. I wasn’t. They thought I had a blood vessel problem. After having been misdiagnosed at that point and spending three months deteriorating, they decided to do an MRI. From the consultant seeing the MRI to surgery was five days. They said it was amazing I was still walking. More like stumbling I would call it – drunk like.
When did your symptoms start?
June 2016 (major symptoms)
How did your symptoms first present themselves?
Tingling in my right arm, then burning sensation, then balance and neck tilted down, I couldn’t lift it up. Then finally bladder and bowel incontinence.
What was your diagnosis experience like?
Horrendous. No one knew why this was happening until the MRI was done. I was referred to Mr Simon Howarth, a consultant neurosurgeon based in Nottingham. It was then I felt I was in safe hands. He was honest from the start, explained the operation was to slow things down, and I could wake up better or worse. And this might not be the end of it. I appreciated his honesty. But, I never believed him at the time. I thought I would have the operation, rest, get better, go back to my world as a newly married woman, carefree, and start enjoying married life.
When were you diagnosed with DCM?
DCM was only mentioned after the operation to us. We had never heard of it. Mr Howarth explained my spinal cord was still indented and although he had secured my disc and spine, the damage was already done. But he had stopped it from getting worse, for now! I will never forget those words: “For now”.
How long did it take you to get diagnosed?
From the first symptom to surgery about a year.
Did your doctor or surgeon diagnose you?
Surgeon, Mr Simon Howarth
Have you had any treatment? If no, why not? If yes, what treatments did you have? How was your recovery process?
Surgery 2017 ACDF C3 TO C7
After the operation, I woke up worse than I was before the operation. My recovery was slow. I couldn’t have anyone near me. My hands burned, tips were numb, and my skin burnt on my arms. I felt dizzy and sick if I sat too long. If I laid flat my whole body would feel strange and go numb. Water was like acid on my whole body, especially on my head. At that point we were told I would have to live with the symptoms and accept them. No way! We did our own research and what could help me recover.
- Physiotherapist: they would not do anything because they didn’t want to risk doing more damage.
- Occupational Therapy: taught me to remember what things felt like. They also helped with equipment like walking aids and bath seats/rails. They still check in with me now yearly.
- Acupuncture: God the pain. Paid privately and spent £1,500. It didn’t help at all.
- Pain Management Team: never heard of myelopathy, but taught me about meditation and relaxation techniques.
- Mental Health Counselor: talked through the grieving process. I was at my lowest, lost my job, the job I loved, lost my driving license, lost my independence. I wanted to take my own life. They were amazing and taught me techniques on how to deal with the bad days and how to enjoy the good days. They also made me realise just because life was so different now, I could still enjoy life. They taught me about art therapy, and how to pace myself and not over do it when I have a flare up. I’m still learning this one, three years on. It’s so hard when you are enjoying something, to stop and say that’s enough.
- Medication: turned me into a zombie.
In 2018, we found out about a spinal cord implant. We talked to my GP who wrote a letter to my local NHS trust, to see if this would be beneficial to me. No reply. So, we found a doctor in pain management in Leeds that was trailing a new Nervo Implant. We paid privately to see him – our last of savings and last hope. He said I was a prime candidate for the new implant, although it would not be a cure. It may be an aid to reduce the medication. Implant surgery was in Oct 2018 on a NHS trial, and medication was reduced and I wasn’t a zombie by Jan 2019.
How has DCM affected your life?
DCM has turned my world upside down. I lost friends, family, job and dreams. But through counseling, I have found a world I enjoy again. I have learnt how to do art and how to garden, all with aids. My husband has adapted many things to help with my independence. I don’t go out much, but I enjoy family time and a few good friends have stuck around. My son said a year ago, he is thankful it’s happened to me as DCM has given him his mum back now because “Mum isn’t working all the time”. Although he wished I was not in so much pain or get so fatigued. He loves that I’m home and always there if he needs a chat or visit. We now sit and really talk about everything, not just the general questions you ask when visiting a relative. He loves hearing about all my little wins, like painting a new art piece, my efforts on helping around the house. My husband has been my rock, every step of the way I have felt we are in this together. He thinks outside the box and has altered the house to suit my needs. He has even learnt how to plait hair (from YouTube) to help me with my hair. The latest thing he has learnt, was straightening my hair. He still hasn’t mastered it but he is getting there. He always makes me smile and we laugh about things. We will never let this condition stop us from laughing and being happy, even on my really bad days.
What are some of the misconceptions of DCM and people with DCM?
- They think once we have the operation, you will recover, then life goes back to normal.
- They don’t believe you are in pain as there are many symptoms and you never know what it is going to be that day.
- You are boring and you never go out much.
- How can you have incontinence from a neck injury?
- They don’t understand this is for life and it may get worse. The “I hope you feel better tomorrow” comment totally makes that point.
- No one has ever heard of it. But if I had cancer, they would act differently because they know what that is.
Do you have any advice or tips you would like to share?
Remember this is a condition that will change your life. So give yourself time to grieve, go through the five stages of grieving your past life, and then embrace the future. Life isn’t over, it’s just different. Think of things that make you happy and relax. Then try and do it, pace yourself, and remember it will never be the same as before but every little thing that gets you to a happier place is worth it. Use any aid. An aid that helps you smile and gives you independence, is an aid worth having. Do not be embarrassed to use them.
How did you hear about Myelopathy.org and the Support Group?
I looked up myelopathy on Google, and found the Myelopathy.org website. So then I searched on Facebook, as I knew I needed people in my life that understood how I felt.
What has your experience been like with Myelopathy.org and the Support Group?
I didn’t interact at the start. I just read posts and learnt a lot. It was so good to hear I wasn’t alone. But as I came to terms with my condition, I started commenting on posts and this was such a confidence boost to me. The Support Group has been a wealth of knowledge and understanding.
How did you come up with the Virtual Coffee Break idea? Why did you get involved with Myelopathy.org?
This year, I felt I had come to terms with the condition and wanted to support others. I also wanted the myelopathy community to come together more. The coffee breaks idea was from a conversation I had with my husband. Throughout the pandemic, we would do video calls with family and friends as a group, had quizzes and caught up. But as restrictions were lifted, everyone slowly went back to their normal lives. I was once again home alone and trying to live day-by-day. I realised others must live like this. Surely they would like to chat to someone, make new friends face-to-face. So I messaged Iwan and asked if they could hold a virtual coffee break. Each coffee break gives me a boost for that day, knowing I have spoken to people that understand. We talk about all sorts of topics and offer advice, not medical advice, but on things that can help. We also talk about how we are feeling, how everyone’s week has been. It’s just like talking to a friend you know.
I also want to help because my body might not work as well but my mind can (on a non-foggy brain day). I have accepted at some point I might need more surgery or even go into a wheelchair. A lot of people can not accept this, and they need support. Doctors, nurses, occupational therapists, physiotherapists, and every medical person needs to be aware of the importance of getting a diagnosis quickly for a better outcome and to understand the condition and symptoms. If I can help in some small way to spread the word, I want to help. If my journey experience can help someone in the future, I want to share it.