Neil Nicholas, hereditary TTR amyloidosis patient, diagnosed in June 2016
As a singer, musician, actor I was going to get a “cool street cred” T-shirt made up with the logo saying “AMYLOID at the top in bold letters and in smaller case under it -“osis”!! Then under that “HOPE IS ON ITS WAY”
The response would be WOW! Who is “ Amy Loid” what sort of music does she do, you must be so into her!!!
I would say !!
“ She has her moments, some very stifling moments but like most artist (or things in life) she will fade and I would have learnt from the experience!!
and whatever doesn’t kill you makes you stronger!!
Speaking about experiences!!
If it wasn’t for the persistence of my dogmatic loving brother, doting sister and my intuitive father I probably would have thought that all the symptoms I had (diarrhea, low blood pressure and numbness in my legs and loss of weight ) were solely down to my diabetes and gallstones.
Ironically, and possibly the reason for my utter stubbornness of not accepting that I may have Amyloidosis was that I previously had been tested before in 2009.
The Doctors at Charing Cross Hospital had taken a sample from my liver and performed a “ Congo Red test” which had come up negative. Later I would find out that it wasn’t an accurate test.
In 2014 the early signs of Amyloidosis reared its head. I noticed that the numbness I had in my legs was getting worse. I had numbness in my toes already, and sometimes shooting pains due to another life altering incident seven years previous but this was altogether different, it was steadily creeping up my legs. I also noticed slight dizziness when walking up stairs and my bowels were doing strange things but then I thought everyone’s bowels do strange and miraculous things at some point and if we all didn’t share in this gut wrenching, school boy chortaling, animalistic problem it would put a lot of comedians out of work.
As we moved into 2015, my symptoms were noticeably becoming worse. I thought the low blood pressure was bearable especially when my mind was put to rest as doctors suggested it most probably was down to my diabetes. However this probable diagnosis was severely put to the test.
My girlfriend at the time and I decided to go on holiday to Bali. The flight was long and I was tired when we arrived. Immediately, just leaving the plane, the heat and humidity took hold. I couldn’t walk up any stairs without stopping for a rest. At breakfast it was nightmare as the food I had eaten would drain the blood from other parts of my body and so it would take me an hour or so to slightly recover. The low blood pressure was so bad that the exercise I do everyday would take an hour longer and only in a very cold air conditioned room and the only way I could get around was by using air conditioned taxis. All in all health wise not a great holiday.
Lovely elephants though.
As we progressed through 2015 tell-tale situations occurred.
Firstly my then girlfriend convinced me to join her in doing a half marathon.
I was never a great long distance runner but quite good at sprinting.
However I was looking forward to participating in a half marathon and we started on a regime of from couch potato to five K. The initial exercise was just walking, GREAT I could do that.
Then things started to come awry. After two weeks the running started and I thought my one kilometre circuit around Battersea park was going well until my girlfriend who was running with me and doing a far better job at it, and with her lilting Scottish accent said and reluctantly pointed out, “Neilly you’re actually not running but fast walking.” “Rubbish” I said.
She then took a video of me to prove the point! I then watched it and was mortified! I looked like I was doing a Max Wall impersonation; doing a fast strut, belly distinctly leading the way. I then also noticed that not only had she captured my proud antics but it also showed a woman obviously in her seventies or eighties running, cradling her Chihuahua whilst overtaking me.
I was devastated!
At around the same time as this was occurring I had auditioned and had got a main part in a “No One” touring show of “Little Shop of Horrors” as the voice of “Audrey 2 – The Carnivorous Human Eating Plant”. This role also required me to do some dancing of which I was good at or so I thought!
After the second week of rehearsals I noticed I was given less dancing to do. I was politely being let down.
I then plucked up the courage to talk to the Director of choreography whose first criticism and first line out of his mouth was, ‘It’s like your going two steps forward and one step back’ [sorry for the pun].
It then dawned on me that this was more than diabetes or gallstones.
Others symptoms were getting worse. The low blood pressure stopped me subconsciously from taking routes that would be known to have stairs, tube stations etc.
But I think the most damaging, socially and for personal esteem, was the constant diarrhoea and especially wind, so much so I had to take an air freshener to gigs to keep my band happy, more so the drummer who was sitting behind me aptly known as the Viking.
With a name like that you would have thought he could handle anything.
To cut a very long story short. After a lot of procrastination I was genetically tested and was found positive, I had the faulty gene.
Strangely enough, what happened next felt like something out of a intriguing movie. As they say “ when the student is ready the teacher will appear.” But in my case, “ when the illness surfaces the seer will appear.”
As if by magic!
I was at a wedding the very next day after my awful news and sitting at my table was a man who worked for one of the biggest pharmaceutical companies in the world and not only that, as I was about to find out, was head of new trial drug and mainly to do with genetic disorders.
WOW! We got chatting!
He suggested not to give up hope and said there was a few drugs coming out that showed a lot of potential and one or two that really worked.
He said for the sake of saving my life I had to get on a drug trial!
Low and behold in January 2016 I was accepted by the Amyloidosis centre at the Royal Free hospital to have an infusion of the gene silencing drug, Patisiran, every three weeks.
I personally felt slightly better after the first two infusions . The diarrhea had subsided a bit although it depended on what I ate. Throughout the next year the bowels had its moments but was generally getting better, and now I don’t really have to work out where toilets are located on my journey. I also don’t have to unexpectedly change the bed sheets and thankfully for the well being of other people in confined spaces, the tube or lifts, there’s no school boy chortling moments or contorted faces and less embarrassment for myself.
After a year and half on the drug I now rarely have low blood pressure and can exercise for 45 minutes in extreme heat, doing weights, kettlebells and rowing without feeling dizzy.
The numbness in my legs have receded below my knees and I haven’t fallen over in the street for almost a year. Initially the numbness was in my hands but that has almost gone.
Being a musician and playing the guitar, this was a worry but with the combination of the drug and using my fingers to play the guitar and saxophone, this now has subsided. ‘If you don’t use it you’ll lose it’
I try to incorporate this moto in my everyday life now.
Two years ago I was resigned to the idea that I may never cycle again but since last week I fixed my old bike up and have been cycling every other day.
I didn’t mention this before but the Amyloid was affecting my voice and being a session singer and having a large vocal range, this really got to me.
I had to mothball an album I was writing and working on. Playing live made me have a more gravelly voice and sometimes I would lose it, but only recently it has come back to life and I’ve started recording again and people actually stand up and clap at most performances. Alright!
Before the drug, when playing live I would have sit on a stool but gradually it was only there for reassurance and now I don’t have one.
In general my stamina has increased a thousandfold and my weight has stayed the same!
My family and I have lost so many to this awful illness.
Losing my beautiful brother Keithy was tragic.
And my wonderful, ‘life and soul of the party’ loving mother of which my father dotingly cared for to her early end.
We always were a close family and because we have this tragic genetic disorder that affects my cousins, aunties, uncles, siblings in all, I was going to say that tragedy binds us together but, it is actually hope that binds us even closer together. In saying that, the Amyloidosis Center at the Royal Free is a most different atmosphere than you’d expect being a place that deals with such tragedy. Instead, it has a warmth that creates friendliness and hope for its patrons.
Thank you for saving my life