Dystonia Living

Tools to Live By

Maintaining Self with a Quirky Body

 

While sitting in the waiting room of the local Vet waiting for my allergy-ridden pup to reappear, I met a wonderful woman who is involved in a sort of last chance rescue effort for incarcerated domesticated animals.

I asked her a few questions about their foster program and mentioned that I might be interested in sharing the information with the readers here. When she heard the word "Dystonia" she excitedly informed me that one of her cats has Dystonia. I laughed, but was fascinated to hear her describe the symptoms and the explanation given to her at the forlorn feline's diagnosis.

It wasn't until a good 5 minutes later she mentioned that she also knew a human being who lives with Dystonia.

Now, never in my life had I randomly met someone who had even heard of Dystonia, so I immediately hoped to connect with her friend. My elation was dampened a bit when told that her friend was visibly affected in her hands and therefore less computer-savvy.

As I am writing this I feel like the very last person to discuss challenges to function and mobility. Nevertheless, the undeniable truth begs us to summon the courage necessary to participate in the flow of life, no matter how frustrating the progression.

Just in case you aren't in physical therapy, occupational therapy, and seeing a physiatrist here are some tools you may want to explore.

Ever struggle to communicate?

Access to alternative communication tools can save your life in more ways than one. Check out the very affordable, multipurpose devices offered by Gus or create communication cards of your own. If you can rely on an upper limb, you might use a slate, sketchbook or notepad.

Incidentally, if you cannot always communicate clearly, it is a good idea to carry medical identification with you. If you create your own, keep it in a place the average person would look when trying to help you (such as a wallet). The ID should name your condition, allergies, medications and offer emergency instruction and contact information.

Ever struggle to ambulate?

If you cannot move about your residence with relative ease, then it may be time to reevaluate things. If you can’t move to an accessible home and you don’t have the money to retrofit, a primary reorganization can often ease the strain.

Move to the ground level. Rearrange furniture so you can move in and out of living space without having to discard your mobility equipment. Having your aids at hand will reduce stress, increase independence, and preserve self-confidence.

If climbing or descending the stairs feels like adventure travel, you might want to look into stair lifts and ramps. Even if you do not use a wheelchair, a ramp installed in at least one easily accessible entrance is an important safety measure. Access can mean the difference between life and death.

Ever struggle for access to technology?

Although many communication devices are also telephones or can be used with a telephone's speaker feature, TTYs are offered for free to eligible persons by Relay Services in many states.Communication by telephone is still a valuable tool and simple AT (adaptive technology) can make it consistently possible.

If you have trouble typing, using a mouse, sitting at a computer or viewing text and images, there are so many options for you. Screen readers, adapted keyboards, alternative or virtual mouse accessories, mini laptops, switches-- the list doesn’t end. If it doesn't exist yet, it can be devised. Odds are, what you're looking for is out there.

The idea is to live fully.

Do you remember the story The Saggy, Baggy Elephant? It is a children’s book, one of my favorites from those days of yore. It is the story of a happy little elephant who is jarred from his elevated sense of satisfaction by others who content themselves at pointing out his ‘faults’. His large ears and saggy, baggy skin become a source of such embarrassment for him that he exiles himself to a dark cave to cry. All joy gone.

When a pack of elephants finds him, he learns that he is just beautiful the way he was made and is able to celebrate life once again. His big ears are for hearing those awesome low tones inaudible to the human ear. His skin he will grow into. He’s an elephant.

 

Rebekah Willis is. She recommends abledata.com's database as an excellent resource in the search for AT.

 

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