The Big One!

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Scissors. Sounds mundane doesn’t it? Such an innocent thing in our lives, but to many with disabilities it’s the first hurdle we have to overcome. How can the act of cutting paper or cloth be such a challenge you might ask? Well when your hands look like this, it isn’t easy.

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In case anyone doesn’t recognize the difference look at your hand. Take notice of the muscle between your forefinger (the one you use to point at things) and your thumb. Nice big muscle eh? Not for me, my hands look like the picture above. What this is, is the muscle that was there is now atrophied (oh man she used a big word). Atrophied basically means withered, wasted, shriveled. It’s totally unusable. Which interprets into every day life to not being able to do anything with a pincher grasp. No snapping fingers to the beat of music any more. Drop something small on the floor? Pft.. time to drag out the broom and dust pan or call someone that can pick it up. But I digress..

I found many years ago when I started having problems with this grasp that using something as innocent as scissors would be a lifelong challenge.

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These may look like everyday scissors to many, but to me they are a torturous instrument sent to destroy my peace of mind from the seven depths of he… um, oh, sorry mom.

Moving on, since I cannot use my fingers to snap etc.. I cannot use them to open and close scissors like ‘normal’ people. So I looked around for something to help  and ran across these babies.

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These scissors are from Fiskars. They are spring loaded/opening and one of the most handy things I have! Usually available at your local big name department stores and hobby/craft stores. They run roughly $10-$15.

As can be seen from the bottom right pair, I love them! Used that pair for close to 20 years when the slide lock finally broke and the spring fell off. Pretty good use for a pair  of $15.00 scissors. The tiny pair I use like most would a small pair of sharp pointed scissors for sewing or crafting, to snip threads etc.

The other two? Obviously I needed a new pair after the spring fell off my old ones. So I purchased a new pair, later decided I needed a pair for cloth and a pair for general use so I purchased a second pair for only cutting cloth. Sadly for me my family (granted all guys) doesn’t understand the ‘pair for cloth only’ part, so they grab any pair of scissors they can find when they need to cut something (how exactly they find where  I hide them is still a mystery to me). Fiskars does make a sharpener for the scissors, unfortunately I can’t find mine, and have been unable to find them locally in a store.

Not long ago I went to my local hobby store looking for the scissors, intending on just buying a new pair. When I got there I was introduced to something new, something that caught my eye, and my fancy! I am sure they have been around for years, but since I hadn’t attempted a craft in a decade or more, I hadn’t paid much attention to new and innovative things. Boy I did that day! Behold the rotary cutter!fiskarsrotary1

I chickened out and didn’t get one the first time I saw them, afraid I would cut my fingers off. I waited and pondered these new and interesting instruments. I went back and finally bought myself one. It was a different brand than Fiskars, it was smaller (and yes, cheaper) than this one. The drawback was it could only cut through one layer of cloth at a time, two if it was a thin cloth.

So I decided to go back to my old standby company Fiskars, and check theirs out. I lucked out when  I went shopping that day, I printed out a coupon from a local sewing craft store (40% off any one item) and got it at a really good price! (If you choose to use a rotary cutter, one thing I will suggest is invest in a self healing cutting mat, you’ll save some headaches, as well as counter tops and tables.. and a ruler.) To say I love this cutter is putting it mildly! It’s awesome!

Ultimately the goal is ease of use, which is what the cutter has given me. It’s taken a bit of getting the hang of the pressure needed to cut the cloth needed, but I learn more with it each time  I use it. The rotary cutter pictured is the exact model I use, left handed as I am and with my grip issues, it allows me to hold it any way I need to get the cloth cut. Now I can craft again!

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And vloia! One of my first attempts at a tote!

 

 

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Hello World!

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A bit of background.

As a child I didn’t know why I tripped and fell so much. I figured I was just a clutz. Through the years I learned in my family, on my mothers side, that many were just like me, and we had this ‘thing’ but it had no name. It caused us to have weaknesses in our legs, ankles, hands and arms.

Finally a cousin of mine went to a doctor and was diagnosed with Charcot-Marie-Tooth Disease, we had a name! But man what a name! CMT is an autosomal dominant disease, and to date I have counted, some verified and many unverified with DNA testing but verified via family, 28 people in our family with CMT! As a genealogist I have traced it back through 4 generations.

As the years have gone by, every time I have tried to explain to people what was wrong with me I’d get these funny looks.. ‘Tooth? Seriously? You need to see a dentist?’ Even one of the ‘specaialists’ I saw when I finally had to go apply for disability said they saw no reason for me to get disability due to DENTAL issues. Sheesh, Google is your freind dude!

After I had my two sons we had a doctor do the whole DNA test thing for us and I was formally diagnosed with CMT 1-A AND CMT 1-B. So I have 2 types of the same disease! To make it even more fun each of my sons has a diferent type of CMT. BUT the geneticist said they have no idea if my having 2 types of the same disease mutated and my sons may have an entirely different type of the disease they inherited from me. Oh boy!

Understanding the disease can be a bit involved. Basically in our case(s) it boils down to one being childhood onset of the disease with worsening symptoms as we grow up and older, the other is adult onset, worsening as we grow older. These days there are even subsets of these and more types diagnosed. I’ll not go into them, but anyone interested can read more on the site cmtausa.org.

One thing our geneticist marveled at was how well adapted we are with having this disease. We run into a problem caused by CMT and try to figure out how to work around it.

I have often thought it would be cool to be able to share the things we have come up with as we learned to adapt to our disease as it has progressed. And since I recently got bitten by the crafting bug, I have had to learn yet more adaptations. My most recent find (a tantalising info of an upcoming post there!) had me thinking about sharing yet again, and so here I am!