Rob’s & Alison’s Story
Alison and I were no strangers to coping with adversity through ill-health, when things changed profoundly for us at the start of 2013.
In the past we had previously managed to get through Alison’s second encounter with Hodgkin’s Lymphoma, involving chemo and radiotherapy, plus issues with bulging discs in her back from degenerative disc disease which had left her in constant pain and with limited mobility.
After all that, things were looking ‘rosy’ again. Alison was back to working full time and, after being made redundant at the back end of 2011, I too was enjoying working part-time for once.
Christmas 2012 seemed to be a turning point. Alison brought home a cough and cold from work, which she kindly shared with me – once again we were ill over Christmas and unable to fully enjoy any festivities!
If we thought that was bad worse was yet to come. I’ll summarise the main points as a lot was about to happen in a short space of time:
- New Year 2013, and after a week or so of normal activity at work, Alison complained of general fatigue and feeling nauseous. Anti-emetic prescription. This didn’t work.
- Vomiting and intractable hiccups followed for three weeks or so, resulting in a 3-stone weight loss, despite various medications.
- Collapsed and was admitted to outpatients to see if any medications could help her hold down some food, and finally managed to get the sickness under control.
- Current medical opinion up until this point was that it had been viral. Even though the extreme tiredness and heavy limbs continued, we thought it might be some kind of post-viral fatigue.
- February arrived and still not able to eat properly.
- Vision became a problem in her left eye, with pixillation or blurriness occurring, which resulted in an emergency visit to Eye Casualty.
- Optic Neuritis. After further tests and a visit to the neurologist it was indicated to us that this may be MS (Multiple Sclerosis).
- Sensation loss in April creating numbness from her toes up to her chest… Back to the doctor who diagnosed Transverse Myelitis and got Alison an immediate referral to Neurology.
- Admitted as an inpatient for 3 weeks and put on steroid drips as they were finally now suspecting Neuromyelitis Optica (NMO). This was confirmed with a blood test, and further scans, though no lumbar puncture due to her previous back surgery.
- The timeline to get to this point was January to the very start of April, just 3 whole months!
While Alison was in Hospital I struggled to find answers. I found a friendly NMO aka Devic’s Disease group on Facebook that put me into contact with practitioners that were specialists in the field of this rare autoimmune neurological condition. This was immensely helpful. Being a scientist myself I understood the condition, but having a simplified explanation from a specialist nurse helped me convey the seriousness of the condition to relatives and friends. It was a very worrying few months waiting for the medications to take effect and limit the aggressiveness of the disease. I think today we are in a better place, but the condition is constantly monitored by the medics and unlike cancers the treatment is not finite. It may continue for many months to come, possibly years, as I have not heard of anyone going into any form of ‘remission’ or reversal. NMO patients, it seems, live with this disabling condition for the rest of their lives with some small improvements along the way.
As you might imagine our lives are now turned upside down yet again, and our plans for the future have changed due to Alison’s limited mobility and vision. I never renewed my job contract in the New Year, instead having to claim JSA and look for work that would allow me to care for Alison at home too. I am now getting back to working part-time again after 6 months.
One of the big challenges after being released from hospital was our home. No downstairs facilities meant that we have had some temporary modifications made to help Alison access the property and facilities. We are now awaiting on a Disabled Facilities Grant to make further changes to our home. By the time that is done a year is likely to have passed. We were able to qualify for council assistance, and now have some help from some lovely carers who cannot be praised highly enough for what they do for us, alleviating some of the pressure of day-to-day living with NMO.
Other hurdles that we have had to jump have been working out how we can get assistance both financially, and practically. There is no handbook that you get given on becoming a victim to such disabling neurological conditions: you have to navigate the minefield of forms, websites, telephone calls and applications yourselves whilst battling with the physical and emotional effects of the disease. It’s a very stressful time for all patients with NMO – indeed any disabling condition – you sometimes wish there was an advocate or ‘fairy god mother’ that could do all the paperwork and calls for you so that you could just concentrate on caring and helping your loved one to get better.
My name is Annabelle Moult, I was born on the 5th August 1982, and I live with my Husband in Buckinghamshire UK.
In 2007 on the 3rd September I woke up in the morning with a very bad headache and blurred vision (I initially thought I had a very bad vino hangover!!). The day carried on and I started to get really painful pins and needles in my legs, so I kept having scolding hot baths as this seemed to ease the pain. Danny (my Hubby) took me to see the Harmony Doctors at the Hospital, I was told I might be Anaemic and to go home and rest as I was going to the Doctors in the morning.
I went home and to bed, in the middle of the night I got up to go to the bathroom and collapsed. I realised that my legs were not doing anything and I could not move or get up, so shouted for Danny, saying something was wrong and we needed to get to the hospital. He had to pick me up off the floor and carry me to the car and into AandE.
At the Hospital I was made to sit on a hard trolley for hours before someone saw me, by this time I was paralysed from my chest down and my vision was decreasing rapidly. The Doctors could not work out what was wrong with me. Over the upcoming days and weeks I had MRI Scans, Lumber Punctures, Plasma Exchange, so much blood taken every day all my veins collapsed. I was put on a very high dose of steroids for the first week to help bring down the swelling that was happening in the legions in my brain.
3 days after being in hospital I woke up and the world was black. I was blind.
I was initially at Stoke Mandeville hospital but it was decided I be moved to The John Radcliffe in Oxford due to the high standard of their Neurological Care. I was in hospital for nearly 6 months, they were unsure of what was wrong with me and due to how quickly my illness came on they informed my family that it did not look hopeful and I would more than likely never get better or out of there.
The JR were magnificent, I had Doctors around me all day every day trying to work out what had happened and why.
Luckily I was allowed to have someone (Danny, my Mum or a family member) with me all day every day, this enabled to keep some normality to my life, even if it was just someone getting me up and helping me to wash and dress. I initially dropped down to 6 stone and was so frail and unstable I could not even put my own hair up or brush my teeth. But when I was finally able to do these every day tasks I had taken for granted previously, it was a real sense of achievement.
After approximately 6weeks of blindness I started to see shapes in the black, my eye sight continued to improve seeing black on black, then grey shadows and misty, and pixelated vision.
It was a miracle my eye sight was coming back but then I started to get spasms in my left arm and this became paralysed for a couple of weeks, now 3 limbs down and blindness, it was what one might say ‘an emotional roller coaster’.
After 4 or so months in the JR they had seen improvements and felt it best to send me to Stoke Mandeville Spinal Ward so that I could be taught how to live my life in a wheelchair. Having been such an active person prior to falling ill, playing hockey, rugby, horse riding, going to the gym numerous times a week, it was going to be a hard transition but something that I have adapted my life to learn to live with.
I did physio every day, wheelchair skills and general everyday activities to learn how to best live life in a wheelchair and being registered blind/severely visually impaired. I left hospital at the end of Feb 2008 at nearly 17stone (due to the steroids).
I have always tried to maintain a sense of humour and never ask ‘why me’ in my eyes why should it not be me?
Within days of leaving the hospital, I had got myself back to work; after such a long time of being institutionalised in the four walls of the hospital I needed to get my brain back in gear and focusing on other things. My Company have been great in supporting me throughout my illness. They have made the offices accessible for me to get around and I have a large screen with magnifying software to ensure I can see what I am doing and working on. I left hospital at the end of Feb on a Friday and was back in work by the Monday!! Mad you may think, but it kept me sane. I was back to work 3 days a week for the first 6 months, just to ease me in, I was also very tiered all of the time, so I had to be careful that being back did not take me back to square one by relapsing. By the September I was back full time and have been ever since. Just because life has changed does not mean it has to stop,.
Friends and Family
I have found that it is vital to keep positive people around and unfortunately when times get hard you find out who your friends and family really are, I have lost friends through this and also pushed people away, but it has made those that stuck around even closer. My friends and family have been amazing and I could not have got to where I am now without their help, love and support. They really all are and have been amazing.
It took 2 years before I was Diagnosed with Devics/NMO, so for that time until my diagnosis I felt like an alien, I did not know what was wrong with me, I had no idea what to do or what to read to help me understand my illness and I could not find a person in a similar situation to talk to. It was a 2-year battle and quite a lonely place to be, but once I was diagnosed it was easier to deal with and be able to have information to help understand what was going on inside of my body. I was able to start helping myself to get better.
I have tried so many different diets, I have tried physio, I have tried alternative medicines and therapies, and some of them I feel have worked, some I have had to walk away from!! But one day something will be found to ease the every day nerve pain I am in, build back the Mylein Sheath that has broken down around my nerves to stop the connection between my brain, eyes and legs. The unfortunate thing is that NMO is such a rare illness that there is not the awareness or the money for research.
They say NMO is incurable, but I say Never say never, one day my illness will go and I will see and walk again.