EDS and Vision Rehabilitation

I'm not an expert in blindness rehab or Ehlers-Danlos Syndrome. These are just my thoughts and experiences as someone who has been both legally blind and bendy since birth. When I did vision rehab I wasn't diagnosed with EDS so no one knew why I was having so much trouble with many of the skills I was trying to learn. Since eye problems are not unheard of in EDS and are common in Kyphoscoliosis type I thought this might be useful to someone.

First thing is that most people with EDS have bad proprioception. So, you put a person who has trouble sensing where their body is in space in sleep shades and that gets even worse. For me, that means that no matter how hard I tried I kept crossing streets slightly diagonally under shades. Walking faster is supposed to make it easier to walk in a straight line when under shades but it just didn't help me and I felt so unsteady that I couldn't manage it.

Also, unstable joints mean that muscle memory doesn't work well for travel. What I mean by this is that stride length will vary and so the number of steps it takes to get somewhere won't be consistent. This mainly applies to indoor travel. For me, I still have trouble walking through the living room in the home I've lived in for almost 8 years. I often use the pre-cane technique of wall-walking that I learned as a child. (I do need to be careful doing that outdoors because I will quickly strip the skin off my hand following a rough wall surface.)

Those unsteady joints also mean that asking for a seat on public transit can be appropriate for blind/vi people with EDS. The movements of a bus or subway can be more than a bendy body can adapt to without falling. Also using the elevator instead of the stairs or escalator may also be the right choice especially when it's crowded and/or when going down. (Going down is harder than going up according to one of my physical therapists.)

Using a cane can be a bit tricky. Encountering an obstacle can lead to a wrist subluxation or dislocation. I had to use a very light carbon fiber cane and couldn't manage to tap it, I just fatigued too quickly and couldn't always maintain the right rhythm. Sometimes a telescoping cane would collapse before my wrist but I wouldn't recommend one for extensive travel. A loose enough grip to avoid injury would sometimes mean I'd drop my cane and finding it could be hard.

Poor proprioception can also extend to the larger space around us. An unscientific poll has lead to me to conclude that even fully sighted people with EDS tend to get lost easily and have no sense of direction. Becoming blind probably won't magically fix that regardless of how hard one works in Orientation and Mobility.

Using a support cane can help with the unsteadiness if the wrist can handle it. However, I never managed the coordination required to use both simultaneously. Eventually an O&M instructor told me that while my travel skills were fine I didn't walk well enough to cross city streets and so paratransit would be appropriate for me.

I'm very grateful to her. She was one of the first O&M instructions who worked with my status quo and didn't focus on 'but there's no reason you aren't walking normally and I'm going to push you till you are.'

Eventually some people with EDS will need to learn O&M skills that are appropriate for crutch and/or wheelchair users.

The poor proprioception also means that holding things level can be almost impossible. This will mostly come up in the kitchen but also with buffet lines and eating. Some of this may come from instability in the arm joints but regardless of the cause it's there.

For ADLs, from casual observance hand tremor is not uncommon in people with EDS, myself included. This complicates reading braille and many kitchen tasks. I was never coordinated enough to manage two handed reading. Plus, repeated dislocations have lead to nerve damage in my hands.

Many people with EDS have symptoms of dysautonomia. Symptoms vary but functionally they include dizziness, fainting or near fainting, nausea, heat intolerance, and fatigue. So intensive rehabilitation programs might not be appropriate.

This is by no means an extensive list of all the ways EDS can impact the things done during rehab. Every program is a bit different. I feel like I've painted a bleak picture but I'm still glad overall that I invested time and energy in improving my skills. At first glance I'm a pretty crummy blind person, I know that. But without vision rehab I think it would be even worse.