Rob and 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 might 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 Spectrum Disorder (NMOSD).  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 NMOSD 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.  NMOSD 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 owing 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 Alison’s releas 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 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 NMOSD.

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.