29/08/2023 - 'How did we get here? Part II' by Alice
After David's fall, life soon returned to normal but it was our occasional walks up to the overdraft pub in Shirley that started to highlight a few other issues. David seemed to be walking into me all the time and I thought (hoped) he was just messing around. ‘Why do you keep budging me?’ I asked. ‘I’m not doing it on purpose, I just don’t seem to be able to walk in a straight line’ came the reply. My heart froze in fear but with not much else to go on, I tried to put it out of my mind. However, on another walk to the pub, David asked me if I could hear a noise when he walked. And it turned out I could.. and that noise was the sound of his left foot slapping on the floor as he walked. ‘Maybe it’s just my trainers’ he shrugged. ‘Hmm maybe’ I said back. ‘And maybe not’ I thought to myself silently. I couldn’t get the idea of multiple sclerosis out of my mind but I tried not to overshare my fears with David too much.
A few other things were going on that really highlighted that we needed to push for help. The first was when we were on the sofa together to watch a film and David put his legs up on my lap. Great film but I was constantly distracted as out of the corner of my eye, I could see his toes twitching. I could also feel his calf muscles moving beneath his skin. ‘Are you doing that on purpose?’ I asked. I was met with a blank face. ‘Doing what? I cant feel anything’ he replied but this kept happening on a regular basis. I knew that these twitches, known as fasciculations, were a red flag for MND but I also knew there were lots of benign causes for them so again, tried not to worry.
Nighttime cramps had been a regular feature for a quite a while with David’s calves going into painful spasms which were hard to relieve. To try and combat these cramps, we bought him magnesium and electrolyte supplements but nothing seemed to stop them. In fact, David confessed these cramps had now spread to his hands and we were both scared.
April came around and we entered a 10k trail race as part of a social weekend with our vegan runners club. I was pacing so couldn’t run with David but I waited and waited for him at the end and 20 minutes later, finally saw him come round the corner to the finish line, looking hunched over and very tired. He confessed his legs felt weak and he felt like he would fall. Around the same time, he found he couldn’t run up the hill at parkrun as he felt his legs had no power and he had to walk. As a previous 20 minute 5k runner, we knew something was very wrong and got him an appointment with his GP.
‘Well, how did it go?’ I ask. Turns out the GP was also worried about his symptoms and some abnormalities in his examination so had referred him for a brain MRI and a neuro review. While waiting for this appointment, we completed a 17 mile walk through London. This was reassuring as we didn’t think anyone with a serious neurological disease would be able to walk that far but as we hit a pit stop, David reached down into his bag for a banana and his neck went into a cramp. We knew his legs cramped which had spread to his hands, but the neck cramps were new and worrying. David’s symptoms were now becoming more obvious, harder to brush off as nothing and were a source of constant anxiety and concern.
The MRI appointment came through for 5 weeks later and David had his scan (which was not without drama as he is desperately claustrophobic). It was at this appointment where he was weighed for the first time in quite a while and David found he had lost 5kg in weight – certainly not intentionally. He seemed to look the same size so this was a mystery. In hindsight, we can now attribute this to muscle loss.
He also received his neuro appointment which was for 7 months’ time. This was just too long to wait and I finally snapped and took matters into my own hands. We didn’t know how things would be in 7 months’ time given that he was getting steadily weaker so I started researching private neurologists but there were still waits and paperwork involved in trying to get an appointment. There had to be some perks of working for the NHS right? So I confided in some trusted colleagues about my concerns who agreed things didn’t sound right. A fellow research nurse managed to set up an appointment the following day with a consultant neurologist who had agreed to see David as an add-on at the end of his clinic. We were nervous about the appointment but so relieved we would finally get an answer as to what on earth was going on.
It was a bit surreal sitting in the neurology outpatient clinic waiting room with all the patients, sweating on the vinyl chairs and trying to ignore the trashy afternoon program playing on the big TV. We tried to make inane chitchat to pass the time but there was mostly just a charged silence between us as we shuffled in our seats with nervous anticipation.
Luckily we are called in promptly and the interrogation began....
A few other things were going on that really highlighted that we needed to push for help. The first was when we were on the sofa together to watch a film and David put his legs up on my lap. Great film but I was constantly distracted as out of the corner of my eye, I could see his toes twitching. I could also feel his calf muscles moving beneath his skin. ‘Are you doing that on purpose?’ I asked. I was met with a blank face. ‘Doing what? I cant feel anything’ he replied but this kept happening on a regular basis. I knew that these twitches, known as fasciculations, were a red flag for MND but I also knew there were lots of benign causes for them so again, tried not to worry.
Nighttime cramps had been a regular feature for a quite a while with David’s calves going into painful spasms which were hard to relieve. To try and combat these cramps, we bought him magnesium and electrolyte supplements but nothing seemed to stop them. In fact, David confessed these cramps had now spread to his hands and we were both scared.
April came around and we entered a 10k trail race as part of a social weekend with our vegan runners club. I was pacing so couldn’t run with David but I waited and waited for him at the end and 20 minutes later, finally saw him come round the corner to the finish line, looking hunched over and very tired. He confessed his legs felt weak and he felt like he would fall. Around the same time, he found he couldn’t run up the hill at parkrun as he felt his legs had no power and he had to walk. As a previous 20 minute 5k runner, we knew something was very wrong and got him an appointment with his GP.
‘Well, how did it go?’ I ask. Turns out the GP was also worried about his symptoms and some abnormalities in his examination so had referred him for a brain MRI and a neuro review. While waiting for this appointment, we completed a 17 mile walk through London. This was reassuring as we didn’t think anyone with a serious neurological disease would be able to walk that far but as we hit a pit stop, David reached down into his bag for a banana and his neck went into a cramp. We knew his legs cramped which had spread to his hands, but the neck cramps were new and worrying. David’s symptoms were now becoming more obvious, harder to brush off as nothing and were a source of constant anxiety and concern.
The MRI appointment came through for 5 weeks later and David had his scan (which was not without drama as he is desperately claustrophobic). It was at this appointment where he was weighed for the first time in quite a while and David found he had lost 5kg in weight – certainly not intentionally. He seemed to look the same size so this was a mystery. In hindsight, we can now attribute this to muscle loss.
He also received his neuro appointment which was for 7 months’ time. This was just too long to wait and I finally snapped and took matters into my own hands. We didn’t know how things would be in 7 months’ time given that he was getting steadily weaker so I started researching private neurologists but there were still waits and paperwork involved in trying to get an appointment. There had to be some perks of working for the NHS right? So I confided in some trusted colleagues about my concerns who agreed things didn’t sound right. A fellow research nurse managed to set up an appointment the following day with a consultant neurologist who had agreed to see David as an add-on at the end of his clinic. We were nervous about the appointment but so relieved we would finally get an answer as to what on earth was going on.
It was a bit surreal sitting in the neurology outpatient clinic waiting room with all the patients, sweating on the vinyl chairs and trying to ignore the trashy afternoon program playing on the big TV. We tried to make inane chitchat to pass the time but there was mostly just a charged silence between us as we shuffled in our seats with nervous anticipation.
Luckily we are called in promptly and the interrogation began....
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