Many of you will remember Gina for her roles in Dennis Potter’s ‘Blackeyes’, or as the hilarious Jane in the sitcom ‘Coupling’. Gina’s mother, Helen, has Motor Neurone Disease/ALS and Gina describes how the disease has impacted on the Bellman family.
Our experience was similar to many other families in that we waited a long time for an accurate diagnosis. At first, (six years ago) it was thought that my mother had probably suffered a stroke. She had started dragging her right foot and was coughing a lot and complaining of a numb lip. She was tested for all kinds of diseases and possibilities and I remember during this period, there being a sort of background chatter amongst doctors, friends and relations that everything would be okay so long as it wasn’t MND. Eighteen months after her first symptom my Mum was diagnosed with Primary Lateral Sclerosis.
I realised straight away that we would need support to deal with this news. I got straight on the phone and called the MND Association. I spoke to a really supportive and sympathetic volunteer. She talked me through how the illness may develop and how we should prepare for the next stage. She asked me about my mother’s support group and then mailed out information packs for myself, my two brothers and my mum and dad.
By the time my mother was diagnosed, she had already started to struggle with controlling her emotions. Overall, this has been the hardest symptom for her to bear. I advised her to speak to her doctor straight away about taking anti-depressants. Obviously, I am not qualified to prescribe medication but in my mothers case it was extremely effective at helping her to cope with the excessive laughing and crying that can occur. With the support of medication my mother has been triumphant at controlling this aspect of the disease. Just recently she had to endure a close family member’s funeral and everyone was very worried about whether she would be able to stay composed. She was remarkable. The grandchildren used to laugh alongside her when she would have laughing outbursts, which would often prolong the episodes. Nowadays, we smile and reassure her but give her the privacy to compose herself gracefully.
I believe that her quality of life has recently improved because she has a new ipad with TBoxApps Predictable software http://www.tboxapps.com/. It's great for people who can still use their hands. The software has predictive text and files for common phrases and a predictive toolbar of commonly used words and names so it's quite quick to type. She’s finding it far more enjoyable to use than the Lightwriter.
I would advise anyone with a newly diagnosed family member to get the MND information packs. They are brilliantly designed and should win all sorts of awards. There are individual self-contained sections on all the symptoms that you can refer to as and when needed and add to a ring binder as the disease progresses. They are simply written with bullet points and no technical medical jargon. When I received the packs, I highlighted the paragraphs that were relevant to us, it meant that we were all on the same page and could learn together moving forward. This disease is totally overwhelming but if you take it one symptom at a time it can lighten the load a bit.
The MND/ALS Twitter community is extremely active. I recommend that people with MND and their carers, should get straight onto Twitter where they can keep up to date with research and fundraising but also make friends with people like us and a huge international community of brave, supportive, knowledgeable and loving people, some of whom have the struggle in common and some of whom are simply interested and interesting. I'm @Ginabellman if anyone wants to follow me.
MND defines the word ‘courage’ for me. I can only speak for our own experience but my mother’s struggle and my father’s support has brought my family much closer together. My brothers and I are in awe of their strength, courage and dignity. The only encouragement I can give is that this disease can strip you of your independence, mobility and speech but it can’t take away your sense of humour. We laugh a lot, especially at things that might have seemed degrading in easier times. Most of the time, my mum doesn’t let it get her down and so, nor do we.
My life will never be the same in terms of finding the strength to overcome a problem or challenge in the future. I am witnessing someone I love take on this disease and wrestle with it to keep hold of her independence, freedom of choice and free will. Moving forward in my life, both for myself and as a mother, I will endeavour to match my mum’s dignified strength and courage.
I’m about to head to America to film the fifth season of LEVERAGE, the US show that I work on. It stars Timothy Hutton as the mastermind of a gang of con artists who have come together to help victims of crime and corruption. I play Sophie, a mysterious, sophisticated grifter who can master any accent and has a soft spot for Tim Hutton’s character Nate. You can see it on FX channel here everyday at 10pm.
In my opinion, helping to care or support someone with MND is not a burden, but a wonderful opportunity to relearn everything you thought you ever knew about the majesty of the human spirit. Although, I would do anything to turn back the clock or obliterate this disease, the fact is, my mum has it and we have to cope with it, and I am grateful for the opportunity it has given my family to look after and support one another and to learn from everything that MND chucks at us everyday!