Raising awareness of MND
For guests who might not know you, what is your connection to Obsession Salon & Spa?
I first worked for Obsession Salon & Spa in the early 80’s but had to leave due to my ex husband being in the Army. I then returned in 2022 but sadly had to resign after being diagnosed with MND.
Have you always been a Hair Stylist? Or have you had other jobs that you might want to share?
I had a break for a couple of years because I wanted to help the local community so I worked for Age UK for a while. I also worked for NEXT but always wanted to return to hairdressing.
Would you mind telling us a little bit about how you found out you had Motor Neurone Disease?
When I return to Obsession, I spoke about being menopausal, hot flushes, dizziness, weak limbs and my speech started to slur. It was only when I struggled to hold up my hairdryer with my right arm that I thought something was wrong and then one of the girls said my arm was twitching. I went to my GP who referred me to a Neurologist and after many many tests I was diagnosed with MND.
You are very active on Instagram,X and TikTok. Is having platforms like these a good way to share your story and build awareness of MND?
Absolutely! There is not enough awareness of MND. It’s a rare disease affecting arounf 1 in 400 people. The more people that know, the more money raised,the closer we are to finding a cure. Everyone did the ALS ice bucket challenge years ago but did we really know why? MND is known in America as ALS. MND is an umbrella term for different types: amyotrophic lateral sclerosis (ALS), progressive bulbar palsy (PBP), primary lateral sclerosis (PLS), and spinal muscular atrophy (SMA).
Have you made new friends and connections through your social media accounts?
Yes! Lots! The MND community is amazing! We’re all family. I have met so many inspiring, brave, beautiful people. We all support each other. I also moderate a Facebook group where we all come together and help any newly diagnosed that are feeling overwhelmed.
There are a lot of charity fundraising initiatives you’ve been involved in. Which one, so far have you enjoyed the most?
I have enjoyed them all! Quiz nights for MNDA, Running (well pushed in my wheelchair) with Kevin Sinfield for 6in7, March of The Day for footballers diagnosed, where I met Rob Burrows, Supporting MNDefiance in Wales to name but a few! I have a 70’s night coming up and my children are running the Stafford 10k this year too!
You do so much to build awareness of MND but you must have very difficult days when you struggle and don’t feel like putting on a brave face. Have you got a good support system around you?
I refuse to cry! I will not waste tears on MND! The only times I cry is when I can’t do my hair and no one can do it like I could!! It’s frustrating. I try not to have bad days but the trick is not to stay there, I see positives in everything. My family are everything to me, they are unbelievably supportive and my friends too! I have the best support circle.
Would you be able to tell us a little more about how you struggle on a day-to-day basis. And are there circumstances / situations which are proving more tricky now than when you were first diagnosed?
Right now MND has taken my arms, my hands are weaker and my neck muscles too. But I’m still walking, just, I do need a wheelchair because my core strength has gone and I have no balance. I now have a PA/carer that helps. I can’t lift myself out of bed without help, I can’t dress/undress, I can’t open doors, lift a kettle, anything that involves arm strength. I tell people ‘imagine being tied by a belt across your arms and torso’ that’s how I feel.
You’ve obviously had to adapt your lifestyle. Have you had to adapt your house and living arrangements too?
Yes, my MND Team and OT are fabulous with helping me with equipment but I’m so stubborn! I always say no, it’s like I lose more independence when I accept help, I am getting better though! I’ve just been measured for a new wheelchair with neck support. I have a stair lift, adaptive cutlery, grab bars, bed rail, electric bed, bidet/commode and rise and recline chair. I’m currently renting and on the waiting list for an adaptive bungalow if/when that happens that will be a huge help.
June 21st is a special day of recognition for all MND organisations across the world. Is there anything special you’ll be doing to mark the occasion?
I’m away then as my daughter is graduating from Durham University but I will be sharing a Q&A on my Instagram account at MNDFEMINABELLATOR Please follow me for updates ♥️
Obsession Salon & Spa have set up a fundraising page to raise funds for MND to help Debbie and others like her. To donate, please click here: