Tag Archive for acceptance

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


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.




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.





This Is Not A Charity Case

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.


After 18 months in business I am now surprised when people ask me why my company is not a non-profit organization. You see I started a staffing company. There is really nothing unique in that. The staffing industry growth is robust. What is unique is that our company, Opportunity Works, focuses on recruiting people with disabilities. This leads many people first to assume that we are a non-profit and then to ask why we’re not.

We are for profit, because my mission is not driven by charity. My mission is driven by the strong business case to be made in including disability in the workplace. My employees are not charity cases. They are people. They are people who, if you look at them as a group, need work more desperately than most other Americans. They are hard-working, dedicated employees who want nothing more than to have a place where they are needed and productive and can achieve financial independence. Since the implementation of the Americans with Disabilities Act, there has been little change in employment outcomes for people with disabilities. There is currently a system of government programs, funding non-profit agencies which provide a wealth of services and training for people with disabilities.

Understand that I serve on boards for such agencies. I have served on the government funded Florida Developmental Disabilities Council (every state has one), which advocates and supports projects around employment initiatives for people with disabilities. I am not knocking these programs at all. What they have struggled with the last two decades is getting meaningful outcomes: people with disabilities all over the workplace. In my advocacy work, I decided that this is a business problem, not a charity case or social service issue.

There is plenty of research to support this theory. People with disabilities have proven to use fewer unscheduled absences, stay in positions longer and boost team morale in the workplace. Businesses desperately want dedicated employees like this. I saw a business need in my community and Opportunity Works was started to bridge this gap.

The word is spreading. I met with the CEO of a local manufacturing company recently. He could easily be my pitch man. He, like me, is very involved in policy making around his industry. He told me that Florida currently has about 6,000 manufacturing jobs that companies are having a hard time filling. People don’t have the right training. He is working on some training initiatives and including disability in that. He has two employees with disabilities in his small 25 person shop and he just plain gets it. He is not my target customer. My target customers are all his peers that don’t get it yet.

Those manufacturers are great target markets, but so are the federal contractors who will likely have some quotas thrust upon them soon. There are about 14,000 federal contractors in Florida. So, there are lots of opportunities for people to find meaningful, competitive employment and really show off their many talents.


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



The weekend of March 15, 16 and 17 was Megacon, held in Orlando Florida. There were many Doctor Who’s, Spiderman, Star Wars, Star Trek, Pokemon and many other characters of shows/movies. The only thing missing was a Rose Tyler, but the con made it without her.

My dad, nephew, his girlfriend and I went down on Saturday for the day. When we got there and was walking down to get our tickets, we could see the huge crowd below. I would say there were at least 2,000 people.

We got our tickets and went on our separate ways. I went to the dealer room first to see all the venders and get some pictures. I then wondered the halls, looking at all the costumes and taking pictures with others.

The first session I went to was a choice between Belly Dancing or Will Wheaton.  I decided to see Will Wheaton.  He was interesting and funny it was a good session.

I decided to go to a later belly dancing session with my dad.  My dad even surprisingly got up and did some belly dancing, I did not have the guts.

I did some lunch and hung out in the halls until I had to be over at the Doctor Who meet-up at 2 pm and session at 4 pm. My next session with Ghost Hunters International was at 5:20 pm.

After the last session, I hung out in the halls some more until the band Frenchie and the Punk came on around 7 pm. They real great and got my body energized. We all left around 9 pm, grabbed some dinner at Pizza Hut and then headed back to Ocala. I finally got home around 1 am.

Megacon was a blast and I recommend that you go at least once, no matter if you have a disability, race, color or age. No one really treats you any different at the con. You could even be creative and make your wheelchair, if you use one, into a great costume like steam punk, Tardis on wheels, etc.

Don’t ever put living your life and having fun just because people may call you stupid or say you can’t do anything. All those peoples are trying to do is tear you down because their own life sucks.

Get off your rear-end and start living life! Complaining and excuses are just garbage and it ruins you.

People may tell you that you need grease for your wheels, but Squeak them anyways to make that change happen.

Hurricane Who Orlando

Wearing my leather jacket, burgundy shirt and black pants, I jumped in the Tardis. I decided to take a trip through time to November 2, 2012, where there was the Hurricane Who Convention going on (All about Doctor Who)

After settling in, I headed down to the convention hall where the dealer’s room was open. There was some awesome stuff including a tardis, a few weeping angels and many people were taking pictures of each other wearing their costumes of different Doctor Who characters. People asked to take my pic/a pic with me and it was so cool. The convention was comprised of different sessions and a masquerade party.

I was so lonely and was looking for a companion to travel in the tardis with me and look who I found (Rose)

People did not care that I was in a wheelchair or that I had a disability. Everyone treated me the same as everyone else, asked to take a picture, talked to me and had a blast. I had so must fun and I learned that if people really wanted to, they could care more about what’s on the inside than what’s on the outside. Instead that is not the case today and people treat people who are different, like they don’t deserve to breathe the same air as them. (BTW it is bigger on the inside than it is on the outside).
Well, I told you how much fun the convention was and hear are a few pictures for you to see.
There was even the cutest little whovian at the convention
This lady with the tardis on wheels won the masquerade costume contest
Don’t blink

The doctor scanning for weeping angels
The universe will explode because two doctors are together at the same time
Remember that there is more in this world then to worry about others, money, and other things that ruin this world. Begin to make this world a better place, kind of like The Doctor does, Squeak, Squeak!

APD Presentation in Orlando at the Faith Based and Community Event:

I was sitting in my comfortable recliner on a Thursday a couple weeks ago, when I received a call from Lane with the Agency for Person with Disabilities.  He explained that Barbara, the director of APD, heard me do my speech accepting the Idelio Valdes Award, at the capital in Tallahassee Florida. She loved my speech so much that she wanted to invite me to a presentation she was doing on October 24, 2012 in Orlando Florida.  She said she wanted me to share my story as well.

I said that I would be glad to do it but the only issue was I had no transportation. Lane told me that he would look into finding me a ride and get back to me. Lane called me back a couple days later to say he found a ride for me. My ride was Clearance, who is a local Marion County APD Employee.

When I got to the presentation room, Barbara and Lane came in and said that it was an honor that I came. Barbara did her presentation about APD and why we all were there. She shared a couple videos, in which one of them was a video of the Ellen Degeneres show where Ellen interviewed a lady with cerebral Palsy and was Ms. Tennessee. What a very inspirational video and it even made me cry. (I want to be on the Ellen show one day, what an honor it would be)

Barbara then introduced me and I did my awesome presentation. Please check out the presentation below: (https://www.youtube.com/watch?v=F–j-vpALxU)

This is proof that if you live your life and do extraordinary things, the person you would least expect to call you, asks you to help them with a presentation, do an interview, etc.

We all need the keep squeaking our wheels to make better things happen!