My name is Rob, I am 40 years old and live in Preston, Lancashire, England.
Before the covid-19 vaccine, I was working as a service engineer for food processing equipment which allowed me to travel all over the world. I spent 6 years very happy in this job.
I’ve always been an active person, perfectly healthy with no health issues. As a father of two, I was constantly running around with my children.
I was always against the vaccine, as I was aware of the lack of research, but with family in America and travel necessary for work, I thought it would be one of those things I would just have to do.
I never felt at risk from covid and have still never had it. As I was a key worker through the pandemic, I would see a high number of people every week, there
had been very few cases at work but to travel and keep everyone safe it was going to be necessary.
On 18th may 2021 I went to Buckshaw village where I received the Pfizer vaccine in my left arm which immediately felt numb but I deemed this normal and experienced no other symptoms to cause concern until the following month.
It was June when I noticed something odd. When walking, I could hear my left foot slapping against the floor, I was unable to take steps properly, my foot wasn’t behaving normally. There was no pain initially but I did start having cramps in the night in both legs which I would describe to be like when you feel you want to stretch legs but as soon as you do so – turns into cramps.
In late June, early July, I had a phone consultation with a GP. Due to the pandemic, it was incredibly difficult to obtain an in person appointment, however, upon hearing my symptoms, the GP thought it was important enough that I went in for examination that evening, it was 6 o’clock at night.
After examination, I was told I had suspected foot-drop – which happens when the muscle in the shin that holds the foot up wasn’t working. He prescribed me medication for the cramps, and I was referred to physiotherapy within the next
couple of weeks.
I was only ever able to meet with my physiotherapist over video call – never actually in person. In total I had 3 or 4 video calls which explained a range of exercises. At this point, it never occurred to me that this could be a reaction to the Pfizer vaccine. The GP informed me the main indicator for foot-drop was a stroke but due to my age and good health, it was never in my concerns.
On July 10th 2021 I received my second Pfizer vaccine at a local pop-up clinic, in my left arm, which again went numb with no other immediate symptoms.
I was still seeing the physiotherapist and was advised to have an MRI scan, but that didn’t wouldn’t happen until December, 5 months later.
It was December, before the MRI could be conducted, when I started experiencing spasms in my left arm in various places, then random twitches in different areas of the body.
Throughout, I was having phone calls with the GP to monitor how things were changing, it was November when we were looking at different things he advised to see a neurologist as he had concerns my symptoms might be motor neurone related.
He referred me to Walton, one of the main centres in Liverpool but due to high numbers of patients and low numbers of staff, they kept cancelling and it was never rescheduled. When I would attempt to book my appointment I was met with “No appointments available yet.”
I was starting to get worried by now, up until then I wasn’t overly concerned, thinking it was just one of those random things that happens and sorts itself out.
The MRI came around in December at the hospital but came back clear. I had left my job in November, due to a change of circumstances. I joined the gym in December as I was struggling to stand on one leg and felt an obvious loss of
strength in my left side.
Once I started training, I immediately realised I had 50% less strength in my left arm. When there was still no sign of a neurologist appointment in December, I paid privately and got an appointment for the 4th of January 2022.
He noticed I had muscle wastage in my left hand, arm and across my back near the shoulders. My reflexes were also highly sensitive to the testing.
He recommended an EMG test (electromyography) but it would be a 6 month wait through the NHS so again, I paid privately.
It took place on 9th February, just a week or so after I started a new job at a pensions company, less strenuous work than my previous position.
My wife came with me to the appointment where I was diagnosed with ALS Motor Neurone Disease.
On the 17th February I handed my notice in on my new job. In some ways we were expecting it but it was hard to hear, we had somewhat come to terms with it but were hoping against it. They gave medication for ALS which slows the progression of the disease by a month or two. It is the only medication there is for ALS.
I saw another physiotherapist about the foot-drop where they gave me a leg splint, talked about family advice, the advice was good and I felt they cared properly professionally about my situation.
I am in regular contact with Preston hospital MND team who are second to none, they are an amazing team. Things have since progressed for the worse, in July I was forced to give up the gym due to long recovery time, 1-3 days.
At first it was helpful but I couldn’t seem to build strength in my upper body, only my lower, 1-3 days to recover. I now rely on walking aid in the form of a stick, only being able to walk for 5 minutes and not very far as I’m moving so slowly.
I would describe my left arm and hand as useless now, and in the past month my right arm has started to quickly go downhill with loss of dexterity and movement. I stopped taking the medication in August due to the strict routine required around taking the dosage. It requires so many hours apart between eating and dosing, fasting for an hour before and also 2 hours after. With the need to keep weight on my body it wasn’t a good fit. Especially when the delay of symptoms is only offset by a couple of months at best.
A lot of people I’ve spoken to have also stopped it due to this reason.
I do take a lot of vitamins and supplements, attending holistic therapy once a month.
Now I focus on raising awareness of this disease I am more aware how many people suffer from MND and how many charities there are out there. I would be happy to connect with anyone suffering from MND and welcome any support.