A chance meeting with an old friend
“I see you’re using a stick, have you got trouble with your joints?”
No, I’ve fortunately not got a problem with joints, my joints for my age are pretty good but I have an ailment called nystagmus and one of the main symptoms is it causes me to lose my balance, hence the stick.
“Never heard of it!”
No, few people have. For me, it’s an ailment that affects the inner ear and that causes one to lose balance.
“That explains the use of the stick, what else does it cause?”
It not only affects balance but it does cause me to have slight change of sight throughout the day. Maybe in the morning it’s reasonable but in the afternoon my sight can get blurred and this is compounded with the fact I need my cataracts removed. I am certainly no expert on the subject, this is just my experience.
The worst thing about it is there is no easy cure to suit all. Some try eye exercises, some have complicated inner ear operations to try and improve the symptoms but as far as I can tell nothing works for everyone. I certainly don’t fully understand all the options but there seems no obvious way of getting rid of it once you’ve got it.
“You mentioned it changes during the day, when is it least troublesome?”
Well, I’m fine in bed! I can lay there all day and I don’t know I’ve got nystagmus but as soon as I get up in the morning and start walking around it makes me dizzy straight away. After breakfast, I usually have to go and rest for 10 to 15 minutes to recover and then I can get up and I can carry on with the day until I’ll become exhausted again and I’m likely to fall over. Fortunately, the stick stops me from having a serious fall although I’ve collapsed in the street a couple of times – lucky for me, people have been around to help pick me up and get me walking again. All very embarrassing!
It’s very difficult because once you’re down your legs will be tired and your body is weak. It’s very difficult not only to stand but also very difficult for you then to start walking again. That’s due to lack of strength and you wobble like a drunk! I think the lack of strength is due to me not exercising my legs as I should and the rest of my body suffers.
The last time I had my eyes examined at a High Street opticians I was told that I didn’t have nystagmus. I pointed out that if he placed an object in front of my eyes and moved it from side to side my eyes wouldn’t always accurately follow the object but when the movement stopped at the extremity of my eye movement, either to the left or right, my eyes start to dart from side to side. He then agreed I have nystagmus.
“Doesn’t it bother you to know that the professionals can’t always pick it up? “
Well, I think you have to accept that it is quite a rare problem and certainly not all professionals are aware of it or cases are so rare that it’s not always recognised. I’m convinced there’s an awful lot of people with nystagmus who don’t know they’ve got it. It needs more research. That could lead in the direction of a cure.
“When did you first notice you had it?”
I was never quite sure when I got it but I’ve always had a problem when cycling, that when looking behind me I lose my balance and tend to wobble. So this led me to think there was always something wrong with my eyesight at the extremes, as others never had the same issue.
It was about 2017 when I got a bout of double vision. This was the first time I’d experienced it and I was quite worried so I went to the hospital and they couldn’t really find a great deal wrong. At around that time Covid arrived. I went down with a very mild attack and after that I was not only falling asleep all the time, but I was getting increasingly unstable on my feet.
I then started to carry out my own research and thought it was myasthenia gravis. A test was done and that was not the cause.
When I returned to the hospital and I was diagnosed, after quite a while, with nystagmus and told there was no cure that works for all, I thought I was all alone! I then fortunately discovered the Nystagmus Network and realised I was not alone. There are many like me in the country that are in the group and I think now of all the people who have got nystagmus and aren’t in the group. I find it very useful talking with others and also those from abroad. I find we’ve all got little quirks that make us different to the next person, this I think makes it difficult for the professionals to identify an appropriate cure.
“Are you still able to drive with the condition?“
Yes I can drive but I choose not to. I have a licence but I don’t have enough confidence in myself to drive. If I got lost or was involved in any form of incident I would more than likely come over fatigued and need to rest. So I’ve sold both cars, use the bus and walk as far as I can. Sadly, my walking days are over and my walking distance is now very poor so I rely on others to take me on any longer journeys.
“To me, all this doesn’t sound too good and I would be very apprehensive if something like what you’ve described crept up on me.”
Yes, I hope for your sake it never does! Coupled with cataracts, diabetes and Long Covid it’s not much fun. But at 87, I have to be grateful for the friends and family that still remain, particularly when you think of all those that we’ve known and are no longer with us!