Archive for Disabilities

Epilepsy and Medical Cannabis

Guest Blog by Jamie Sagona – Self-Advocate and friend.

I came across a New York Times article, which led me to a Huffington Post article,

which led me to a Tedx Talk video that blew my mind. It inspired my to do a large

amount of research into medical cannabis and its use for the treatment of seizures

(among other things). It has been a long time since any treatment for epilepsy or any

medical conditions for that matter has gotten me so excited or given me such hope.

One of the more cutting edge treatments gaining notoriety for treating seizures,

even the most severe seizures in children, is not what you might expect. It’s

medical cannabis. A specially derived extract from a plant that has been bred to

have no psychoactive effects, but more analgesic and anti-inflammatory qualities.

It has essential no tetrahydrocannabinol (THC), the psychoactive element found

in cannabis, and it has a high concentration of the non-psychoactive element

cannabidiol (CBD).

So far, there have been no reported negative side effects from taking medical

cannabis. Pharmaceutical treatments for seizures often cause one if not several of

the following: weight gain, fatigue, kidney damage, liver damage, depression, and

cognitive processing problems, among other problems.

A non-profit organization in Colorado called Realm of Caring developed this special

strain of medical cannabis and distributes it to children and adults with various

medical conditions, including epilepsy.

Children that were taking numerous pharmaceuticals and still having hundreds of

seizures a week are now seizure free or virtually seizure free after just one dose of

this cannabis extract. Not only are they seizure free, their cognitive and physical

development has rapidly improved as well. Research currently being conducted

indicates that this improvement my not only be a result of the lack of seizures, but

also due to a property of the medical cannabis.

The irony is that as far back as 1949, research conducted in the United States

showed that cannabis a good treatment for seizures. I am on a quest to learn more

about medical cannabis and its effect on seizures. What I have learned is just

the starting point for me. More research is being done every day internationally

to discover the medical properties and uses for medical cannabis. Luckily,

everyday more information comes out and more formal research studies are being

implemented.

I think it is not only important for me to share research regarding cannabis as a

treatment for epilepsy, but also as it relates to treatment for medical conditions

such as Alzheimer’s, Arthritis, Anxiety, Glaucoma, Depression, Multiple Sclerosis,

Cancer, Chronic Pain, PTSD, Parkinson’s, Migraines, Nausea, Tourette’s Syndrome,

HIV/AIDS, Hepatitis C, and Crohn’s Disease. And these are just a few of the medical

conditions that we know of so far. Pass it on.

http://www.huffingtonpost.com/2013/10/21/medical-marijuana-pediatric-
epilepsy_n_4137260.html

 

 

How others view people with disabilities and treat them like they are not really human.

Have you noticed how people without disabilities, treat people with disabilities like they are so special and people who help them are incredible human beings?

I was, with a friend/someone who helps me with certain actives like shopping and cleaning at  home that I can’t reach, at Sam’s Club the other day.  We were standing in line and a lady in line next to us comes up and says how it is so nice how you are helping that special person (Referring to me).

I had to fight myself to keep my cool or the beast in me would have come out! My support services person on the other hand couldn’t help but pipe up and respond to the lady, “Lady, one day we will all need help.” My support services person told me she had to hold herself back because she would have let the lady have it.

People say things like, “What is wrong with him, is he retarded or disabled or something?” There is no need for it, if you don’t know then don’t ask.  Besides it is none of their business.

There is a British video called Talk on YouTube and it turns the world around.  Persons with disabilities are the norm and those without disabilities are considered different.  Check it out, it’s funny and serious.

Time to change everyone and quit putting others down because they are different!

Squeak, squeak

 

Florida BLOGCON 2013

This is my second year attending the bloggers conference held in Orlando Florida. The conference has been going on for three years now. My first year was last year and I attended with my dad and brother and this year I attended with my brother.

I have to say that last year was awesome but this year was even better! The conference was held at Full Sail University which was a really great venue. Bess, Katy and the team did a great job putting the conference together.

The day started with me getting ready and waiting for my brother to pick me up so we can head to Orlando. When we got to the conference and signed in, we decided to look around and see what was going on. We were just going along when I suddenly hear someone call my name. I turned around and it was Katy, she wanted to say hello and that it was great that I came back this year. The keynote speaker (Pat Williams, VP of Orlando Magic and a motivational speaker) was about to begin so we headed over to grab our seats.

Bess, founder of conference, got on stage to welcome everyone and say a few things. One thing she mentioned was that this was the third year of the conference. She asked everyone who attended last year to stand up. Well, being in the wheelchair I did not stand up but I raised my hand, to my surprise Bess said that she knew I was there. She was the first person to ever do that and I was so glad she did.

The keynote speaker began and blew the crowd away. After that the different sessions started and went to 4:30. I attended many great sessions and had a great lunch provided by Bahamas Breeze. After lunch we had time before the sessions began again. We had choices to check out Google glasses, take a guided tour of Full Sail or to do yoga. The decision was to go on the tour.

The tour was awesome! We had some roadblocks because the tour guide took us though some doors that had stairs only. The tour guide nicely came back and led us through another entrance, while the rest of the group waited inside for us. Great experience and the university is wheelchair accessible for the most part.

After the tour, we went to other sessions until 4:30. We then headed off to a timeshare in Orlando that was family was at. My nieces 1 year birthday was that same day and we all wanted to celebrate before I had to go home sweet home.

One of the big messages we got from the conference is that even though we all have struggles and obstacles, we need to suck it up and keep moving forward conquering our goals and dreams.

I am so excited and can’t wait until next year’s conference but in the meantime we all need to remember to squeak our wheels until ours hearts content!

Becoming Disabled

Although I am listed as a team blogger with my son TJ, the reality is that I have allowed him to do most of the blogging.  It only makes sense, as he is the person living with a disability.  Being a parent is important, but it is not the same as actually living with a disability day to day.

As an advocate for those with disabilities, I have often been called on to give speeches or talks, or to even testify before our State Legislature.  I can not remember how often I have mentioned that being disabled is one of the minorities you can join or become a member of at any time.

Someone who is able bodied only has to trip and fall to join the ranks of those with disabilities.  A car accident, a virus or medical condition – so many things, some of them seemingly innocuous, can cause anyone, at any time to join those with disabilities.

In April of 2012 I took that step.  I went from what many in the disability community call a Temporarily Able Bodied (TAB) person – to a person with a disability.  The journey from TAB to disabled was relatively quick.  In my case it was a major stroke that paralyzed my right side and caused limited cognitive issues.

In the months and now year since my stroke, my right side has gained most of its mobility and although I still have cognative issues, I have recovered very well.  However, the fact remains that I now am classified as a person with a disability.

For those who are into classifying levels or severity, I would probably be classed as mildly disabled.  However, as the old jokes goes there is no such thing as being a little pregnant.  Of course I am not pregnant.  Rather I have limitations that were not there before.

My friends remind me not to complain and of course they are correct.  As anyone will tell you, all you can do is accept and move on.  That coupled with the fact that there is still so much that I can do – keeps me mindful of the fact that I am very lucky.

You have heard or read TJ say over and over again about living your life to the fullest, despite limitations or disabilities,  and of course he is right.  He has lived his disability day in and day out for over 26 years and will continue to live it for as long as he is around.

As a parent, I can tell you I can not ever remember hearing him bitch or complain.  Not once has he become distraught or depressed because of his disability.

He is the model that I try to emulate as I try to cope with going from TAB to a person with a disability.  I am always mindful of his continuing struggle and his continuing acceptance in the face of odds that I am not sure I could handle.

The message is simple, we move on and deal with any disabilities or problems that come our way.  At times we may falter or feel sorry for ourselves.  So we find a model or models that help to keep us straight, keep us from feeling sorry for ourselves.

I am lucky I can look to my son for that inspiration – I can also look to so many others I have met in my work and advocacy with persons who have disabilities.  I look to TJ, Heather, Manyvonne, Ian, Michelle, Linda, and so many more.  I remember how they persevere and keep living their lives as  best they can.  And at times live their lives better than they can, even though that may not seem possible.  But it is true.

 

 

 

 

More Employment Opportunities for People with Disabilities

NOTE:  This is a guest blog by a good friend.  Judy Owen owner of Opportunity Works, Inc. a Florida based full-service staffing company that brings a motivated and diverse workforce to our customers. Our focus on employing people with disabilities brings value and diversity to the workforce of our customers like no one else. Contact us today to learn how we can help complete your team.

Judy is also a regular blogger on Forbes.  Here is a link to her Forbes blog.

We are delighted to have our friend Judy as a guest blogger.  Thank you Judy.

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Nearly two years ago, the U.S. Department of Labor issued a proposed rule to strengthen the U.S. Rehabilitation Act with regards to employment opportunities for people with disabilities. Finally, last week the rule was finalized. This new rule sets an aggressive 7% hiring goal of people with disabilities for all federal contractors. Not only do they need hiring goals they need to take on appropriate outreach and recruitment activities to demonstrate efforts to meet the goal.

This should bring a flurry of activity in to organizations named as examples of partners for outreach and recruitment activities, such as the nationwide network of centers for independent living, the state divisions of vocational rehabilitation and much to my surprise, “private recruitment sources, such as professional organizations or employment placement services that specialize in the placement of individuals with disabilities.” That means they’ve included companies like mine, Opportunity Works in the mix. This is great news! Not just because it can help my sales efforts. It’s great because two years ago, companies like mine didn’t exist. There are now just four staffing companies in the U.S. with a specific focus on recruiting people with disabilities. So, to see signs of our existence is exciting and hopefully we are here to stay and really can have an impact on the employment of people with disabilities.

Federal contractors have 120 days from commencement of a contract to get an affirmative action policy and procedures in place to comply with this new rule. In Florida that means over 14,000 companies now need to take action to comply. Many companies, especially larger ones, have started working to prepare for this rule already. Many more contractors will need help getting everything done. I hope my company is poised to provide support, but I hope all of the service providers around the state are watching out too. This is a boon of opportunity to prove the value of including disability in the work place. We read all the time about all of the people with disabilities who want to work… now is our chance to ensure we match them up to jobs they will cherish and get them out there working!

 

Parking To Unload

Have you ever been somewhere and there was a UPS truck or something, parked across two or more handicapped spots to unload?

I was at the movies the other day and this exact thing went down. A truck with a trailer was taking up all but two handicapped spots. One spot was taken and the others open. There were other handicapped spots across the way that were open but the point is that those unloading trucks, etc. should be parked in an unloading zone or somewhere else.

If you ran into this, would you report it or would you just get frustrated and move on? What I did was get frustrated and moved on. I did not want to start anything, even though I should have.

The next time, I will complain to the place I am at and call the police to come fine and fix the situation. Heck, if that does not do anything, I will just block the space hogger in so he can’t leave. This needs to change now!

People will do crazy things like this and it is your duty to make sure it does not continue. Did Rosa Parks move to the back of the bus when asked or did she stand her ground and got sick of the way the black community was being treated?

Even the public bus (Suntran) in Ocala was about to get it because even though there is a ramp on each bus, it is so steep that a wheelchair can’t make it up. When I ask the bus driver to give me a push up the ramp, they say they are not allowed. They usually help, but the day they absolutely refuse, I will put my wheelchair on the ramp and not move or park in front of the bus so it can’t leave. I can kind of understand their point for not helping but if you know how the bus is, the bus system needs to change how the lift is or something.

Time to make changes in this world and don’t stop squeaking your wheels until it is done!

Ocala Rotary

About a month ago, Thomas got an email inviting him to speak at the Ocala Rotary Club.

This was such an honor and Thomas accepted. He got there not knowing how many people or who he will see. When he arrived he saw his friend Betty Grey and her daughter. They do therapeutic horseback riding in Marion County.

Thomas was showed where he should sit and relax and do a last run through of his talk, while everyone came in. Thomas met the lady who invited him. The meeting started and some business was handled before they called up a lady who introduced Thomas with a little background on him. Everyone applauded and Thomas came up to speak.

Thomas had motivated, inspired and made everyone laugh. One thing Thomas shared was a story called The Race he found on YouTube (http://www.youtube.com/watch?v=jmfKlXMbTw4).

Thomas mentioned that he is the author of The Squeaky Wheelchair and that he is a motivational speaker who goes around speaking to different groups, businesses, charities, at conferences and events and more. Thomas Moon is available to speak at your next conference, event, business event, nonprofits, church, etc. Contact him at tj@moonscapes.org or by phone at 352-502-5994.

Thomas informs everyone today that it is time to step out of that freaking box they put themselves in and start moving forward. There is nothing that’s truly impossible if you set your mind to it. Looking at the word impossible, you will actually see two words that say, “I’m Possible.”

Get off that hinny of yours, step out of the box and keep squeaking your wheels until you conquer your goals and dreams!

The Ability to Overcome

Ocala Magazine did an article about empowering people with disabilities and Thomas Moon was one of their people they wrote about.

Normally Thomas goes after things and asks to be put in the paper, etc but this time, the Ocala Magazine approached him about doing an article with him in it. What a great honor! People just are frustrated with their own life being messed up, that they bring you down because they think it will make them feel better. The truth is it won’t!

Don’t let others stand in your way because when you squeak your wheels, you can’t help but move forward! You can check out the Ocala Magazine article.

article pic

 

Bang

When I was in foster care, there was this moment that was a bang to my head – literally.

Everyone was getting ready to go out one night and I stepped out the front door. A second later there was a big bang, but what was it you may ask? First let me tell you a little about the house. The house was off the ground and steps led up to the front door. There were no no railings on the steps and next to the steps was a big metal tank, water or something.

Ok, now that you know a little about the house, let’s get back to the big bang.  After I stepped out the front door, I slipped on my jacket that  I had stupidly left on the second to top step. When I slipped, I fell head first right into the metal tank.

Out comes everyone to see what’s going on. They see me lying the behind the tank temporally unconscious. They lift me up and see that I have blood gushing out of my face right of my eye.

They rushed me inside to clean me up and see how bad it was. They ended up having to take me to the emergency room, where I got stitches to close up the opening above my eye. I made it of course or I wouldn’t be here today writing this blog and living my awesome life. Could I be a ghost haunting the world with peace?

The reason I told this story to tell you that the stupid mistake I made almost came back and really bit me in the butt and took my life. Stop doing the stupid/ridiculous things in your life and start living your life to the greatest it can be led. People today are getting themselves into bad things that ruins you are life even more every day. Many drink to much, do bad drugs, smoke, complain all the time how others are ruining your life and more.

Time to get off your butt and start going after the life you always wanted, while busting through the obstacles trying to stand in your way.

This story I shared with you above,  scared the crap out of me and got me thinking about my life. Squeak your wheels and show the world that nothing can stand in your way of climbing the mountain of life!

Helping/Making a Difference in the Community

Do you understand that how you help your community, is what helps this world go round?

There are many different causes and people in the community that could use help. Are you helping with anything, cancer causes, helping people with disabilities, helping children, etc?

I put on The Second Annual Strike Against Cancer event on April 6. This was a great event that raised $546 to help many in our community battling cancer. The attendance was only about 25 which could have been a better number. We did a 50/50, door prize drawing, drawing for homemade cupcakes and of course we bowled and struck against cancer. Next year this will be an even bigger and better event and I know you will show up.

You need to understand the importance of getting off your butt and helping others. We can all make a difference in this world.  Get up and make that difference. You can do things to help as simple as coming to walk the track at Relay For Life/Checking out all the booths. I am not saying that you need to kill yourself doing all kinds of fundraisers, but do something every month to make a difference somewhere in our community.

This is the end of excuses and it is time to start Squeaking Your Wheels!