Ataxic Cerebral Palsy and Cerebral Visual Impairment

Lena Welch

Hello 

Was wondering if anyone else has ataxic CP and a visual impairment. I am 28 and I have both and just wanted to find anyone with the same/similar conditions? I also have a guide dog. 

Lena

Blue Frog

Hi Lena, I hope you don't mind but please can I ask a bit more about cerebral visual impairments?

My little girl is only little, but they think she has this - there is nothing wrong with her eyes, it is just that her brain doesn't process the signals properly.  She is going for a test soon with electrodes on her head to measure her responses to lights.  

What is it like having this sort of visual Impairement? What helps? And does your vision vary sometimes as I have noticed this with my daughter and want to check I haven't made it up! Thanks very much 

Lena Welch

Hi i don't mind at all ask away. Mine hasn't been diagnosed as such but I'm fairly sure this is what it is because i have CP as well and there isn't anything wrong with my eyes and like you say it's the brain that has the problem. For me yes every day can be different for instance if I'm tired or ill everything is not in focus and i can't see much at all. At night again i have next to nothing and bright lights are not very nice. I have had some sort of electrode test but not quite sure what the hospital concluded apart from its neurological. I have a block squint and nystagmus (wobbly eyes) and no 3D vision. 

Life can be difficult but you do adjust and yes she will will probably need Help at school. 3D vision I don't have and that's a common thing with CVI because my eyes don't work with each other, they work on their own, one eye will most likely be weaker than the other and its things like stairs, steps, kerbs and uneven pavements that cause problems, also not being able to judge speed is difficult especially when it comes to traffic so that can be quite dangerous and I've had near misses but thanks to my amazing dogs I've been very fortunate that they've saved me. 

Crowds of people are very difficult and it panics me because that as well as lights and all sorts going on is too much information for the brain to process. The brain is amazing in some sense and it does adapt so even though i may not see something naturally my brain tells me to go round and I don't know what is there or the other way around where it can think something is there so i panic and then realise nothing is there! Odd and i don't quite understand it myself. 

I have a guide dog so that has made my life so much easier but i know your daughter is only little so a guide dog may not be on the cards just yet but you may think about a buddy dog as it may help your little girl with confidence etc.

There is a charity here in the Southwest based in Exeter called WESC And they are leading specialists on CVI so it may be worth looking at their website, they had a conference earlier in the year but unfortunately i couldn't go but i plan to go next year. It's on the 4th May 2017 if your interested. I think it's a new thing CVI for many hospitals, some have never heard of it. Keep me posted on your daughter and if i can be of any more help let me know. 

Blue Frog

Hi thanks so much that info is brilliant  I will have a look at that website, you are right there is hardly any info about. Will def keep in touch on here, I really appreciate your help x

Lena Welch

Your very welcome, another thing I have just remembered is anything below eye level is difficult to see or non existent so i can drop something on the floor think i know it's dropped but when i look there's nothing there so that can be frustrating so I'm constantly tripping over stones and uneven paving etc unless i have my guide dog with me. Glad I've been of some help