I thought the next post would be to address the question on everyone’s mind (?) When and how did you know something was wrong?

My onset of symptoms started in July 2016, at the time I thought it was hormone or stress induced.  I was on my 75^th scuba dive in the Maldives.  Dive preparations went well, water entry fine.  20m into the descent I could not control my breathing cycle, my equipment was fine, it was as though I forgot how to breath.  My first aborted dive in 15 years.  The rest of the dives were completed fine but with a much shorter bottom time.  Dives completed I considered stress to be the cause of the abortive dive.

The next set of symptoms I started to experience at work, I found myself mentally stumbling over the last words of my sentence and physically repeated them thinking I fumbled them on delivery.  This went on for about 2 or 3 moths.  At the same time I found myself grinning uncontrollably at consultants and colleagues during meetings,  I found this very disconcerting, especially when I was trying to be serious. This never went away it simply become worse and by October it was having a negative impact on my family life (grinning at Antoinette while we were having a major argument) – again I thought these were stress related and pushed them to the back of my mind.  By early October I started to notice challenges with my strength and motor skills.  Carrying 2 mugs of coffee in one hand was proving challenging, my thumb would not close tight enough around the handles, as a result I needed to support the cups with my free hand from below.  Opening 500ml plastic water bottles was becoming challenging and on occasion I needed to ask a colleague to open them for me.  My strength in my cross-training sessions also started to decrease, I could no longer get through all the rounds of push-ups without finishing on half push-ups.

The final symptoms that lead me to seek a Neuro-muscular consult occurred in November 2016. Fasciculation of the biceps, shoulders, chest, a Rigor mortis like stiffening of the body in the middle of sleep combined with calf cramps and stiffening of my gait – which occasionally made me appear drunk. In hind sight, the accumulation of the symptoms is clear, at the time I could not connect them. December to March 2017 I had 4 different opinions (Dr. Abubaker Al Mandani at City Hospital; Dr Najwa Al Bustani at Cleveland Clinic; Professor Ammar Al Chalabi at King’s College Hospital and Professor Pamela Shaw at Sheffield MND Centre) between the UAE and UK to confirm the diagnosis and all the while the symptoms progressed. My Neurologist (Dr. Abubaker) decided it would be better to treat me with an IVIG infusion to rule out any auto-immune diagnosis, I had 2 sessions with zero impact and on March 4^th 2017 I was diagnosed with Bulbar onset ALS. By this time my speech and swallowing had been affected, I could no longer drink tablets with water, and I started using thicker liquids or carbonated drinks to manage medication.

Since March the symptoms have continued to progress monthly in a manner that can’t be predicted. My gait has further weakened and compromised and by August I was using a walker rollator for stability and balance and more importantly for reducing falls. On a positive note, with the assistance of Stephen and Barbara Byer at ALS Worldwide I started taking Quinine Sulphate, Atropine Sulphate and Dextromethorphan (Neudexta) the combination of these medication has significantly reduce my emotional incontinence, removed the night cramps and more importantly improved my swallowing (allowing me to drink un-carbonated water again) and slowed down the deterioration of my voice.

I guess that brings me to the present. Symptoms will continue to progress but life will carry on adapting……‘The most important thing is don’t look back on what happened. Instead look forward to what you can do. Just crack on!’

Before closing off this post I wanted to share a very demonstrative post I read on ALS Today – How to Help Your Friends When They Ask How to Help You.

#ChallengeALSDXB