Central Core Disease

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Central Core Disease
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I'm new here!

I'm Lauren - I'm an award-winning inspirational speaker and Invisible Disabilities Association (IDA) ambassador.

Born with Central Core Disease, a rare neuromuscular disorder, I have about 33% strength of the average person, but I'm known for my enthusiasm, yay-saying and 100% spirit.

My participation in the IDA's inaugural Walk and Roll in 2023 raised over $2,000 USD for the organization. I'm the first Canadian to receive the "But You LOOK Good" Inspiration Award from the Invisible Disabilities Association.

I've been featured on CityNews Toronto, RareDiseaseDay.org, Insauga, Global News, OMNI TV and more.

I'm looking to connect with others with invisible disabilities, rare disorders and muscle disabilities, and continue sharing my experiences and stories.#MightyTogether

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Hope and a purpose

I'm living with Central Core Disease but I'm still living! I'm 58, with 3 children and 8 grandkids. Truly blessed! I've been thinking about my life lately, and I remembered my "friend" in the bed next to me before, during and after our scoliosis surgery, both age 15. We laughed, sang along with the radio, joked with the staff, and had no idea what life would look like for us. We had hope for our futures. I had CCD, she did not. Years later, I see how I have continued to laugh, sing, and joke around to show others how well I am doing and to be a light to people who had less to deal with than I did. I didn't show the painful, weak side of myself.
I recently moved, and met my neighbor. She has CMT. She has extreme hearing and scent sensitivity. She never comes out of her house. Never.
Now I think I was given this 'gift' of being put here for a reason. We lift each other up with daily phone calls, we share with brutal honesty the effects of our disease(s), we listen and sing to music, and encourage one another. We respect each other with time alone when we have bad days. We text and e-mail. There is only one wall between us. We never see each other. But we are bonded.
Never give up. I have a new purpose, at 58. I never thought I'd get this 'old'. I didn't WANT to. I have a new hope. I have a purpose.

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Making Lakeside Accesible

There's nothing quite like going to the lake or beach during the summer. What a wonderful way to get the sand between your toes and cool off in the water.

Many able bodied folks take for granted how difficult it can often be for a disabled person to enjoy this part of life.

Our wheelchairs get stuck in the sand, so for the majority of us we can't get onto the beach unless we are fortunate enough to find a location with a beach wheelchair or are able to own one for ourselves. I wish more beaches would invest in beach wheelchairs to provide for free or even a small fee.

For those of us who can't stand or walk, getting into a lake or pool to take a dip is a no go unless we have a lift nearby. There are quite a few pools that have electric lifts but not many lakes have docks on them with a lift option.

Which gets me to the point of my post. My girlfriend and I recently decided to move in together. We both had homes, mine was too big for us and hers was too small and not very accessible. Having muscular dystrophy (central core disease) I have always tried to enjoy my life and do things such as travel, RV, boat etc at as young an age as possible because I'm only growing less mobile and more fatigued.

My grampa had a small cabin up in Manitoba Canada and as a kid I would go there for our summer vacations. I knew that I wanted to eventually retire on a lake because of the memories made in my youth.

After selling both of our houses we were able to purchase a lake house. We are very fortunate to be able to live where we do, we've both worked very hard and it's wonderful to enjoy the fruits of our labor.

After adding a ramp to get down to our dock we started looking into a way to get me into the water. We found a variety of electric lifts and two manual types. You'll see in the photos that we went with the hoyer manual lift. The hoyer dock lift works just like the hoyer lifts that you use in a home except that it goes into a base mounted by your lake or pool. After putting the water proof sling around the person, you pump a handle that raises the boom. After the person is lifted off their chair you twist the post until the person is over the water and then twist a small dial to release the hydraulic pressure and drop the person into the water. The lift works perfectly and can be purchased for around $1100 - the base is $400.

Our next task was to find a pontoon boat that I could access and would fit our dock. After looking for about 90 days we finally found the one. It's a 92 Kayot 20 footer with a Yamaha 55hp outboard motor. The door is wide enough to squeeze my wheelchair into and we took a bench off the deck so I could easily park my wheelchair under the bimini top for shade. Just lay my 8 foot aluminum ramps on the front and roll on and through the door. The last touch will be to add another lift base to the boat for swimming.

So remember, you're never too young or disabled to enjoy your life. It's the only one you got so make it work for you