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Disability advocates


May 13, 2014

 

                     

I wanted this article to deal with real difficulties that people with Morquio and others have in everyday life. Whether it be finding a job or getting to work. And of course as Carol spoke of in her blog written on April 29, getting a vehicle is a battle much less driving to work or wherever.


I would like to have some feedback on this blog especially since we all have issues daily dealing with disabilities. I know we have a few disability advocates in our group. I believe one lives in New York and the other in Hawaii.
How many of you out there advocate for yourself or as a parent? If we don't speak up for ourselves who will? It takes moxie to confront a situation that needs to be addressed.  When you advocate for yourself, more times than not, this creates a positive response especially when done without negativity. I believe people do want to help and know why you're in a wheelchair or why you're small, and they may be curious and just don't know how to begin a conversation without coming off sounding awkward. In such cases why not begin the conversation yourself? This will naturally put others at ease.


One little story I have to tell happened many years ago at one of the first conferences I went to in Portland with the Little People of America Organization. We gathered a few Morquio families and went out to lunch, not far from the conference hotel. My good friend, Lyle Barone, who has since passed, noticed our waiter staring at him throughout lunch.  So when our waiter asked if Lyle would like to have an espresso with his dessert he replied "No way, Geez this is how I got so small in the first place"! Everyone laughed including the waiter. It was a wonderful way to break the ice so to speak. Humor certainly does add value! And while I realize this isn't really tackling a big issue it does show how a few placed words can turn things around.


Sometimes it's people just staring. And sometimes its people literally talking down to you because they think you are impaired mentally simply because you are in a wheelchair.


Let's hear your story about advocating for yourself?

 

Mary Smith

 

 

 

Send us your Questions and Comments!

 

 

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Confidential?:

 


Name: : Christian Louboutin Outlet

 

Email: : angkmkazv@gmail.com

 

Comment:

I enjoy the efforts you have put in this, thanks for all the great posts.

 


Name: Maria

 

Comment:

 

I had to do some real advocating moving from New York to Hawaii. It helped that my grandparents lived here for 20 plus years. I know to most people it is because of that honeymoon/ dream vacation place, but I actually moved to gain more independence. I can ride my bike any time of year, but also it is easier for me to get ready to leave the house. Light weighted clothes, simple summer wear and sandals! Actually many people are bare footed here. I do miss New York food and my friends but that was a hard place to live. I'd be stuck at home during the winter, forget the snowstorms or rainstorms. When we got here a couple of weeks after thanksgiving cramped in a hotel room with 13 bags, my parents I searched the internet for a rental, the place we ended up renting had one step on both front and side doors, luckily my father brought his tools and built ramps. I will write more about the place on another post.

 



 

Comment:

 

Check out Maria McClellan's Blog "City with a Wheelchair" as a wonderful example of advocating for yourself.

 


 

May 6, 2014 Keeping strong

 

In this week's blog I want to focus on keeping and staying fit. One of the best ways to keep as physically fit is to exercise daily. I'd to emphasize how important it is to do exercises that put no strain on your knees and joints. Such as swimming, using a stationary bike, working out with free weights but no more than 3lbs (doing more reps), and doing Pilates and stretching are among the best ways to keep you strong. All these will give you an overall body workout.


Keeping your weight down is always a good thing. And being in a wheelchair does make it harder but not impossible. Staying active is good for your heart as well as a wonderful benefit to enhance your mood. When those endorphins kick in it creates a sense of wellbeing and you simply feel better.

 

When using free weights it's always better to use lighter weights such as 3lbs. but to do more reps. Using Pilates bands is really a slow timed stretch. Great for the back and to keep loosened up.

 

I also use the fit bit clip to be aware of tracking my exercises as well as my food intake and it keeps track of how many steps you take in a day.  It tracks how many calories you burn, and your exercises when you input them into the app that you download for free. The fit bit is around a $100. There is jaw bone up too which is a bit more expensive. I do prefer the fit bit because I find it to be more accurate and easier to use.

The more active and strong you keep yourself the better quality of life you'll enjoy!

Soon we will be uploading a video that Carol and Melissa are working on now. It will be on Pilates at her studio with the machine using modified moves to show how many exercises you can do to stay and keep fit!

 

 

 

Mary Smith

 

 

 


 

Question:

 

I wanted to know if anyone would like to share your artwork here on the blog? I think it would be fun!

 

 


 

 

mary closeup

 

Blog Entry 3: 4/29/14

 

Hello there,

So a lot of people seem curious as to how I drive. I've been asked many questions on the  subject so I figured I'd bring it up here.


I got my truck a couple years ago, and it has been by far the coolest purchase I've ever made. Because of my little red truck I've been able to drive myself to work, school, and most importantly go joy riding to the next town with some friends for a concert.


I'll admit it was a process to get this ball rolling. We had debated over trucks vs. vans and almost everything in between. Cars proved to be impractical and vans seemed expensive. So eventually after weeks of searching, my dad and I stumbled across a beautiful cherry red truck. We knew the moment we saw it that that would be the one that worked. So I signed some paperwork and presto, I was the proud owner of a ford ranger.

 

The only problem was that I've never actually driven before. It seems completely backwards to buy a truck without having ever been behind the wheel, but it seemed the only solution. I needed specialized equipment installed in the truck to drive it, and I can't install all of that without buying something. So I bought it and hoped for the best. I had petal extenders, and for lack of a better word a booster seat built into the driver's seat. Then I had a wheelchair lift installed into the bed of the truck. After I hook my chair into the lift, I can hop into the driver's seat, and operate my backseat robot with a remote. It's a pretty sweet setup. So a few scratches and a speeding ticket later I'm on the road! To be honest it hasn't always worked like a charm, but it does the trick and I wouldn't trade the freedom my truck gives me for anything. 

 
As always feel free to comment or email me about anything, morquio related or not.
Have a good one,


Carol 

 

 

 

 

Blog entry 2: 4/25/14

 

 

Hello everyone!
We honestly don't have any earth shattering news to shout about as far as morquio goes, so we thought we'd take this opportunity to check in with you guys. We'd love to have this blog be an interactive and social place for the morquio community to get together and talk about everything and anything. So with that said, how's your week going? What have you been obsessing over lately?
We've added a comment section to the blog, so you can share your thoughts here. Your comment can be public or private if you wish.
Look forward to hearing from you!

 

Have a good one, and check back next week for a new blog!
Sneak peek for next week's blog:
We'll answer some of the most asked questions


 

 

Question:

 

So my wife and I just found out that our son will need surgery on his neck. It's a major procedure and just the thought of it terrifies us. My boy is only 7...how can we explain all of this to him? The last thing I want to do is scare him, but I how do you sugar coat that?


I'm just wondering what some other parents have done in this situation... Any guidance would be great.

 

Thanks- Concerned father


 

Question: Hi,

 

My daughter was just recently diagnosed with morquio. We just celebrated her 5th birthday, and next year she's going to start 1st grade. I'm concerned about her and how the other children will look at her. I've debated about going into her class to explain to her classmates and her teacher about her condition, but I'm not sure if I should or not. If anyone has any advice it would be greatly appreciated.

 

Thanks-


 

Question: Hi guys!


I'm a 22 year old woman with morquio and I've always wanted to have children. I was just wondering what are the possible risks in carrying a pregnancy to the full term.


Thank you so much!