Tourette Syndrome Awareness Month

June is Tourette Syndrome Awareness Month. People living with Tourette Syndrome are so much more than a hackneyed joke. We are mothers, fathers, children, educators, award-winning journalists, Olympic Gold medalists, professional athletes, actors, rising pop musicians, authors, producers, and so much more. We are a community of equal, exceptional individuals who should not be defined by tics.

Now, more than ever, we need to band together and speak out, educate and inspire others to be more open-minded and break free of the stigmas that surround this disorder. It is time to get rid of the stereotypes, and to stop using Tourette as an excuse, slur or punchline. It is time to recognize that Tourette Syndrome is a medical condition: a neurodevelopmental disorder – and that underneath the uncontrollable symptoms are children and adults – human beings with hopes, dreams and feelings.

Tourette syndrome occurs along a spectrum—that is, its severity ranges from mild to severe. The majority of cases are mild and require no treatment; the impact may be so mild that casual observers might not realize the person has Tourette’s. Most people with Tourette syndrome lead productive lives with no barriers to personal or professional achievement. Intelligence and lifespan are normal and the overall prognosis is positive, although a minority of people with Tourette’s have severe symptoms that persist into adulthood.

There’s no cure for Tourette syndrome. Treatment is aimed at controlling tics that interfere with everyday activities and functioning. When tics aren’t severe, treatment might not be n

June is Tourette Syndrome Awareness Month. People living with Tourette Syndrome are so much more than a hackneyed joke. We are mothers, fathers, children, educators, award-winning journalists, Olympic Gold medalists, professional athletes, actors, rising pop musicians, authors, producers, and so much more. We are a community of equal, exceptional individuals who should not be defined by tics.

Now, more than ever, we need to band together and speak out, educate and inspire others to be more open-minded and break free of the stigmas that surround this disorder. It is time to get rid of the stereotypes, and to stop using Tourette as an excuse, slur or punchline. It is time to recognize that Tourette Syndrome is a medical condition: a neurodevelopmental disorder – and that underneath the uncontrollable symptoms are children and adults – human beings with hopes, dreams and feelings.

Tourette syndrome occurs along a spectrum—that is, its severity ranges from mild to severe. The majority of cases are mild and require no treatment; the impact may be so mild that casual observers might not realize the person has Tourette’s. Most people with Tourette syndrome lead productive lives with no barriers to personal or professional achievement. Intelligence and lifespan are normal and the overall prognosis is positive, although a minority of people with Tourette’s have severe symptoms that persist into adulthood.

There’s no cure for Tourette syndrome. Treatment is aimed at controlling tics that interfere with everyday activities and functioning. When tics aren’t severe, treatment might not be necessary.

There are medications to help control tics or reduce symptoms of related conditions.  There are also different types of therapies that are safe and effective treatments for Tourette syndrome.

More information can be found on the Mayo Clinic’s website at: https://www.mayoclinic.org/diseases-conditions/tourette-syndrome/diagnosis-treatment/drc-20350470

Advertisements

May is Mental Health Awareness Month- PTSD

If you have gone through a traumatic experience, it is normal to feel lots of emotions, such as distress, fear, helplessness, guilt, shame or anger.  You may start to feel better after days or weeks, but sometimes, these feelings don’t go away.  If the symptoms last for more than a month, you may have post-traumatic stress disorder or PTSD.

“Posttraumatic Stress Disorder (PTSD) is an anxiety disorder that can occur following the experience or witnessing of a traumatic event. A traumatic event is a life-threatening event such as military combat, natural disasters, terrorist incidents, serious accidents, or physical or sexual assault in adult or childhood.

PTSD is a real problem and can happen at any age.  If you have PTSD, you are not alone.  It affects over 14 million American adults (4.4% of the adult population) in any given year.

Who can get PTSD?

  • Anyone who was a victim, witnessed or has been exposed to a life-threatening situation.
  • Survivors of violent acts, such as domestic violence, rape, sexual, physical and/or verbal abuse or physical attacks.
  • Survivors of unexpected dangerous events, such as a car accident, natural disaster, or terrorist attack.
  • Combat veterans or civilians exposed to war.
  • People who have learned of or experienced an unexpected and sudden death of a friend or relative.
  • Emergency responders who help victims during traumatic events.
  • Children who are neglected and/or abused (physically, sexually or verbally).

What are the symptoms of PTSD?

For many people, symptoms begin almost right away after the trauma happens. For others, the symptoms may not begin or may not become a problem until years later. Symptoms of PTSD may include:

  • Repeatedly thinking about the trauma.You may find that thoughts about the trauma come to mind even when you don’t want them to. You might also have nightmares or flashbacks about the trauma or may become upset when something reminds you of the event.
  • Being constantly alert or on guard.You may be easily startled or angered, irritable or anxious and preoccupied with staying safe.  You may also find it hard to concentrate or sleep or have physical problems, like constipation, diarrhea, rapid breathing, muscle tension or rapid heart rate.
  • Avoiding reminders of the trauma. You may not want to talk about the event or be around people or places that remind you of the event.  You also may feel emotionally numb, detached from friends and family, and lose interest in activities.

These are other symptoms of PTSD:

  • Panic attacks: a feeling of intense fear, with shortness of breath, dizziness, sweating, nausea and racing heart.
  • Physical symptoms: chronic pain, headaches, stomach pain, diarrhea, tightness or burning in the chest, muscle cramps or low back pain.
  • Feelings of mistrust: losing trust in others and thinking the world is a dangerous place.
  • Problems in daily living: having problems functioning in your job, at school, or in social situations.
  • Substance abuse: using drugs or alcohol to cope with the emotional pain.
  • Relationship problems: having problems with intimacy, or feeling detached from your family and friends.
  • Depression: persistent sad, anxious or empty mood; loss of interest in once-enjoyed activities; feelings of guilt and shame; or hopelessness about the future. Other symptoms of depression may also develop.
  • Suicidal thoughts: thoughts about taking one’s own life. If you or someone you know is thinking about suicide, chat online at http://www.suicidepreventionlifeline.org/ or call 1-800-273-TALK (8255).

How can I feel better?

PTSD can be treated with success.  Treatment and support are critical to your recovery.  Although your memories won’t go away, you can learn how to manage your response to these memories and the feelings they bring up.  You can also reduce the frequency and intensity of your reactions.  The following information may be of help to you.

There are many types of therapy out there:

  • Psychotherapy
  • Medicine
  • Support Groups
  • Self-care: Connect with family and friends, relax, exercise, get enough rest, keep a journal, refrain from using drugs and alcohol, limit caffeine, help others and limit TV watching.

 

*Information taken from Mental Health America website.

North Dakota Nice: #SayYESS

One of the many reasons it’s great to be a North Dakotan is knowing that you live in a community that cares about you. Introducing YESS (Youth Empowering Social Status) – a brand-new organization that brings together young people with and without disabilities to build peer relationships and make sure no one is left behind.
YESS had its first full board meeting in January 2019. Board President Erin Pasley kindly offered to give us a little insight on what the community is doing to #sayYESS:
Tell us about YESS.
YESS is for people ages 14 – 24 with and without disabilities. For myself as the president, I know this is a need from my best friend, who has Down Syndrome. The public high schools do a fantastic job providing peer-to-peer programs that partner people with and without disabilities in the classroom (they even have inclusive sports). After high school, however, there aren’t really any peer-to-peer opportunities. YESS aims to fulfill this need for inclusion after high school by getting kids involved at an earlier age to give them community connections for a lifetime.
This is incredibly important to continue a supportive community environment outside of school, and helps youth be an active voice in the community and a positive force. It also helps youth know that they can do anything that they set their mind to. Similar to the Dakota Center for Independent Living – our founder, who are constantly involved with us and empower us to reach for the skies – if you have a goal, we will help you reach it!
I personally became a part of this group as I was diagnosed with Fibromyalgia. While others in our group have mental health disabilities, cerebral palsy, spinal cord injury, traumatic brain injury, etc. I have found support from all of them even though our disabilities are very different. They have taught me how to handle accessibility issues I face and we all together counsel each other on daily difficulties.
You just had your first meeting, and you’re already busy. Tell us what you have going on.
We are getting ready for our first two events: a mocktail mixer (March 23) and a conference (June 20). We have also spoken with multiple organizations and schools, including Burleigh County Public Health, Legacy High School, and Century High School.
Planning for our MockTail Mixer has been a lot of fun! It will be our very first event. We will have live music, mocktail drinks, popcorn, board games, visiting with others, and board games! It is March 23 at the Hillside Community Complex in Bismarck from 6:00 – 9:00 pm. We will also be a part of local conferences as vendors sharing our information, including Light It Up Blue (an Autism Awareness event).
What are you hoping to achieve in 2019?
With 2019 being our first year, we aim at having five or more organizations give talks to our board to help us grow as people serving those with disabilities, create a video explaining accessibility issues in the community, attend conferences in North Dakota, host our own conference (which is in the works), continue hosting fun inclusive events, connect with local lawmakers and attend legislative events, and create a community of youth that is supportive and fun.
Over the next five years, we hope to establish a yearly conference, continue hosting inclusive events, encourage independence in the community, and be a voice for youth with disabilities in legislature. Another piece we will always do is encouraging our members to be open about their disabilities and educate the community on them!
Tell us about your board of directors.
Five out of six of us have a disability. We all are unique! I (Erin Pasley, Board President) am working on achieving my bachelor’s degree from University of Mary in Speech Language Pathology and next year begin their master’s program. Alyda Blazek (Vice President), who does not have a disability, is a Special Education Major and has a passion for serving others. Andrea Frohlich (Secretary) is a consumer of DCIL and is a strong member of our team, especially with planning our conference in June. Bruce Klootwyk (Treasurer) has his master’s degree from University of Mary, is a substitute teacher, and is involved with Dreams in Motion. Dayton Farley (Marketer) is involved with computers in his free time, is a consumer from DCIL, and is also involved with Dreams in Motion. Colin Wetzsteon (Member) is from Hazleton and is a huge North Dakota Bison fan. You can also catch him skiing with Ski for Light. We are also occasionally joined by Vicki Laraway, Renee Wetzsteon, Roxanne Romanick, and Kathy Temchack!
What can North Dakota do to support YESS?
North Dakotans can support us by sharing our name, attending our events, getting youth with and without disabilities to our event, and donating to our cause! We often forget that some people with disabilities cannot drive and struggle utilizing public transportation. Getting to our events is essential!
Is there anything else you’d like to tell us?
We exist to prove disabilities don’t define us, and to encourage others that their disabilities don’t define them, either. Our disabilities make us unique and powerful, and we can make a huge difference.
[From Amanda: The topic for the YESS June conference is “Embrace Your Disability.” If you would like to participate in any of the events, learn more, or just say hello to this amazing group, visit them on Facebook at Youth Empowering Social Status – YESS. And if you happen to share this story, please be sure to use their official hashtag: #sayYESS

North Dakota Nice: #SayYESS

One of the many reasons it’s great to be a North Dakotan is knowing that you live in a community that cares about you. Introducing YESS (Youth Empowering Social Status) – a brand-new organization that brings together young people with and without disabilities to build peer relationships and make sure no one is left behind.

YESS was founded by Vicki Laraway of the Dakota Center for Independent Living in Bismarck, and had its first full board meeting in January 2019. Board President Erin Pasley kindly offered to give us a little insight on what the community is doing to #sayYESS:

Tell us about YESS.

YESS is for people ages 14 – 24 with and without disabilities. For myself as the president, I know this is a need from my best friend, who has Down Syndrome. The public high schools do a fantastic job providing peer-to-peer programs that partner people with and without disabilities in the classroom (they even have inclusive sports). After high school, however, there aren’t really any peer-to-peer opportunities. YESS aims to fulfill this need for inclusion after high school by getting kids involved at an earlier age to give them community connections for a lifetime.

This is incredibly important to continue a supportive community environment outside of school, and helps youth be an active voice in the community and a positive force. It also helps youth know that they can do anything that they set their mind to. Similar to the Dakota Center for Independent Living – our founder, who are constantly involved with us and empower us to reach for the skies – if you have a goal, we will help you reach it!

I personally became a part of this group as I was diagnosed with Fibromyalgia. While others in our group have mental health disabilities, cerebral palsy, spinal cord injury, traumatic brain injury, etc. I have found support from all of them even though our disabilities are very different. They have taught me how to handle accessibility issues I face and we all together counsel each other on daily difficulties.

You just had your first meeting, and you’re already busy. Tell us what you have going on.

We are getting ready for our first two events: a mocktail mixer (March 23) and a conference (June 20). We have also spoken with multiple organizations and schools, including Burleigh County Public Health, Legacy High School, and Century High School.

Planning for our MockTail Mixer has been a lot of fun! It will be our very first event. We will have live music, mocktail drinks, popcorn, board games, visiting with others, and board games! It is March 23 at the Hillside Community Complex in Bismarck from 6:00 – 9:00 pm. We will also be a part of local conferences as vendors sharing our information, including Light It Up Blue (an Autism Awareness event).

What are you hoping to achieve in 2019?

With 2019 being our first year, we aim at having five or more organizations give talks to our board to help us grow as people serving those with disabilities, create a video explaining accessibility issues in the community, attend conferences in North Dakota, host our own conference (which is in the works), continue hosting fun inclusive events, connect with local lawmakers and attend legislative events, and create a community of youth that is supportive and fun.

Over the next five years, we hope to establish a yearly conference, continue hosting inclusive events, encourage independence in the community, and be a voice for youth with disabilities in legislature. Another piece we will always do is encouraging our members to be open about their disabilities and educate the community on them!

Tell us about your board of directors.

Five out of six of us have a disability. We all are unique! I (Erin Pasley, Board President) am working on achieving my bachelor’s degree from University of Mary in Speech Language Pathology and next year begin their master’s program.  Alyda Blazek (Vice President), who does not have a disability, is a Special Education Major and has a passion for serving others.  Andrea Frohlich (Secretary) is a consumer of DCIL and is a strong member of our team, especially with planning our conference in June.  Bruce Klootwyk (Treasurer) has his master’s degree from University of Mary, is a substitute teacher, and is involved with Dreams in Motion. Dayton Farley (Marketer) is involved with computers in his free time, is a consumer from DCIL, and is also involved with Dreams in Motion. Colin Wetzsteon (Member) is from Hazleton and is a huge North Dakota Bison fan.  You can also catch him skiing with Ski for Light.  We are also occasionally joined by Vicki Laraway, Renee Wetzsteon, Roxanne Romanick, and Kathy Temchack!

What can North Dakota do to support YESS?

North Dakotans can support us by sharing our name, attending our events, getting youth with and without disabilities to our event, and donating to our cause! We often forget that some people with disabilities cannot drive and struggle utilizing public transportation. Getting to our events is essential!

Is there anything else you’d like to tell us?

We exist to prove disabilities don’t define us, and to encourage others that their disabilities don’t define them, either. Our disabilities make us unique and powerful, and we can make a huge difference.

[From Amanda: The topic for the YESS June conference is “Embrace Your Disability.” If you would like to participate in any of the events, learn more, or just say hello to this amazing group, visit them on Facebook at Youth Empowering Social Status – YESS.  And if you happen to share this story, please be sure to use their official hashtag: #sayYESS !]

Fearless vs. Fear Less: My Own Conclusions By: Kenny Salvini

Being fearless is not lacking fear. In fact, it’s the opposite.  It’s having fears and choosing to go forward despite them.  It’s a blend of persistence and courage that can be developed over time.  There are mental, emotional and spiritual muscles that can be strengthened through repetition.  They can, when flexed at the right time, catapult your life to the next level –whether it’s moving out on your own, taking a road trip or reconnecting with your true passions in life.

It’s easy to get caught up in the day-to day grind and negative self-talk that convinces you you’re going to be an utter failure on the next endeavor, all the while forgetting how far you’ve come. Living fearlessly takes a lot of many things: asking for help from family and strangers, being open to learning with and from others, getting to know your reactions to life’s challenges, and developing new habits.

At some point, you flip from fearing what ‘might’ go wrong to fearing you’ll miss out on the growth that lies just beyond. By continually pushing against your boundaries, you learn to see the world, and yourself, from a perspective you may have never considered.

This happened for me this past spring while my future wife, Claire, and I planned our wedding. Claire, a diehard Dancing with the Stars fan, sweetly, but unequivocally, demanded that we dance at our wedding.

At first, I shot it down, for fear of the inevitable embarrassment. But then I realized I didn’t want to start this chapter of our lives with the narrative that there were certain things I wouldn’t do because of my insecurities surrounding my life in a wheelchair.  All it took was a single lesson with an adaptive dance coach to help me see ways Claire and I could have fun with it.  So we had that first dance and it turned out to be the most memorable part of the entire wedding.  It really brought the house down.

So the next time life presents an opportunity to stretch one of your comfort zones, I hope you’ll take the chance to be fearless and surprise yourself.

“I Was Really Successful at Living Poorly”

You met John Yunker on our Facebook and Blog site a few years back. John took 2 trips down the Missouri River in his homemade sail boat, with his dogs; the first one with Grace(“Gracies Tale”) and the second trip with Mercy.

The sailing was not the only quest that our friend, John, has been on since his accident nearly 5 years ago. His accident involved a horse that came up out of the ditch as he was riding his motorcycle, hit John knocking him off of his bike, shattering his skull. John has had many challenges since then and the biggest one being his inability to get anyone at the Social Security Administration to acknowledge the brain injury was serious enough to effect his entire life and ability to work.

In Johns words: “I felt like a horse chasing a carrot, never getting closer to it at times. I just wanted to give up.” But, then I would say to myself, I’m not going to let them win. I had no other recourse; no continuous plan…either succeed or die. I was not ever recognized as a person with a brain injury, (there are so many different TBI’s) and mine is not physical. So, it got to be where depression took over and lead to medication and suicidal thoughts. It got so bad that I was hospitalized.   After I was released from the hospital, I was notified that my hearing to determine if I would receive benefits had been moved up to two months instead of the one year. On August 14th was my court date. The judge ruled in my favor and awarded me 18 months back pay. Now I have SSDI and I can pay my rent, electricity, buy food, phone and actually have some clothes and money to call my own. I was really successful at living poorly. I learned how to exist and make it day to day. Now I struggle with how do I spend my money. I’m not sure what to do with myself. I thank God that I had help from DCIL (Dakota Center for Independent Living).”

 

Workforce Possibilities

With it being National Disability Employment Awareness Month, here’s an idea…

We have a huge, untapped resource of great workers in our community.  These folks could be a tremendous benefit to the workforce in our community.  This is the community of people with different abilities, which others may call disabilities.

Many people on the autism spectrum are keenly aware and sensitive to the input going on around them at all times, but they can stay focused on the task at hand without skipping a beat. Honesty, bluntness, reliability and passion are very typical qualities when looking to hire new employees and these qualities are characteristic for many on the spectrum.  They spend the time, energy, and the imagination necessary to truly master what they are focused on and they stick to it even when the task becomes  difficult, frustrating or just plain ‘uncool’ to do so.

Sometimes it takes a small amount of patience to learn and to understand the world of autism, but you will always be the one who gains from this relationship. You can’t put a price tag on the amazing qualities of these individuals.

In a world where we deal every day with dishonesty, bullying, and a low moral compass, I find the qualities of these people on the autism spectrum, very refreshing. If you give them a chance to share themselves with you, you can watch how they may cause your business to prosper.

And this is just one of the many groups of people with different abilities that seek employment in our community. Being inclusive and diverse in your employee base could help your business to grow.  Win/win.