Nice to See You!

Credit: https://www.researchgate.net/figure/Patient-with-Mac-Tel-2-right-eye-stage-1-A-FA-image-late-phase-increasing_fig1_333725146

About this time last year I was wondering why I'd not been using my time to blog more. I was definitely cooking more and with new ingredients, lots of things I could be sharing and with the pandemic I was not short of time.

The truth is, after a day on the computer for work where strange things were happening especially when viewing spreadsheets, both me and my eyes seemed too tired to contemplate another round of the same in the evening. My eyesight seemed to be getting worse both for close up and distance. And as the pandemic meant not driving much, it took me a while to notice.

As soon as the opticians opened in July I was there for an appointment. Two surprising things happened.

Firstly, somewhere in the test people started to treat me differently. I'd decided to be as honest as possible about what I was seeing. In my previous tests I'd been scared to say what I was seeing - sometimes the letters disappeared or changed position, bright sparks and dark spots prevented me from seeing, it sounded weird to me and I thought they would get annoyed or impatient.

This time though I said it how it was. They paused the test, left the room, someone came in to ask if I was me and then pulled a sad face and said "bless". They came back with what I now now as an Amsler Grid, a grid with a dot in the middle, but what I could see were wavy lines. There was more quiet discussion. Then they showed me some pictures of my "macular layer". They were in a quandary as there was an issue that they couldn't identify (they had 6 pictures to identify different conditions and mine wasn't one of them). They wanted me to go to hospital for a second opinion and they wanted me to get a blood test and my blood pressure taken as soon as possible.

Secondly, they wouldn't let me drive home. My eyes had deteriorated so much I was no longer fit to drive without glasses. That was a shock to my system and should have given me a warning about what was to come.

A few weeks later I was waiting at the hospital in weird COVID conditions for another eye test and a scan with some dilating eye drops. I wish I had appreciated how much those eye drops would affect me, I would have bought a return tram ticket for a start, it was the sunniest day of the year and I had no sunglasses and all I could see once outside the hospital was brightness, I had to get a lady to buy my ticket and felt a bit sad and helpless. I got home and slept for the rest of the day.

I had to go back again for a final set of scans and to meet the consultant. This was a surreal appointment. It ended with the consultant who told me I had (Ideopathic) Juxtafoveal Macular Telangiectasia Type 2...say again?...Apparently they call it Mac Tel 2 for short! The neuro-receptors in the part of my eye responsible for my central vision have been destroyed and gradually, hopefully slowly, I will lose my central vision all together. The meeting was brought to a close by my consultant cheerily advising me that there is no treatment and no cure so there was no point in him seeing me again, he'd sign me off. I would be OK as it's slow progressing but at some point I could register as partially sighted and I would have to stop driving. He suggested finding a support group and to do some research. Thanks. He did at least write it down on the back of an Amsler Grid.

Thankfully the first thing I did was google and I found a Facebook group which has been super helpful and alerted me to the Lowy Medical Research Institute*.

I've since been to the Lowy Clinic in the UK, situated in Moorfields in London. They were brilliant and have really left me with a more positive outlook than I had after visiting the QMC. They had me there for a whole day of testing and scans and blood samples which will be used in their research for understanding and a cure and they will keep me up to date with their various trials and invite me to participate if I am eligible.

An implant treatment about waiting to be licenced in the US. I hear varying successes from the participants of the test, but they don't yet know who had the implants or who had the placebo. The intent of the implant is to halt the progress rather than cure. However, I read everyday about miraculous treatments for other eye conditions so believe there is hope.

Currently MT2 affects me by making close up things a bit wobbly and if I close one eye there is a hole of nothingness in my view, not black just not there, My distance vision is fine, the body is an amazing thing and my eyes (or my brain) compensates over a distance, the doctor at the Lowy said I will never lose my distance vision altogether though it may not be good enough to drive, I have to be sensible and make the right decisions about the time to give up. As it's in both of my eyes I've had to notify the DVLA and they will send me for a visual field test I believe on an annual basis to keep my licence renewed. To me at the moment that's the scariest part of this, I equate my ability to drive with my personal freedom, I know there is public transport and taxis but that makes me reliant on others, I don't even like going on coaches for work trips because it removes my ability to escape, so I'm going to have to come to terms with that when the time comes.

The other thing of course is that all my interests require visual acuity - blogging, reading, watching - I love World film and series so being able to read subtitles is a must, lino printing and drawing, but I have been gathering tools to help me and I have been referred to a Low Vision clinic in a couple of weeks which can teach me a few tricks hopefully.

Anyway, that's it in a nutshell, so if my posts are erratic this is why, if there are words in the wrong order this is why.

If you want to see a great account of what it's like there are some great patient interviews on the Lowy website, although my favourite account has gone now, it really did describe the effects on the everyday, the accounts now are much more a story of diagnosis and adaptations for everyday life.

In the Facebook Group "The Macular Telangiectasia (MacTel) Discussion Group" (you need to have a diagnosis or be a referred relative to join), a guy called Mark Essner has created a couple of video for us to share with family and friends what it's like to have Mac Tel 2.