Battling Dystonia and a mission to raise awareness!

Newsbreak! Have you seen this Dystonia video? 

Lee Pagan, founder of the Australian Dystonia Support Group, was interviewed about her battle with Dystonia, along with young Athlete, Ryan Flinn, who cycled 5,500km from Perth to Sydney in a bid to raise awareness and funds to find a cure for Dystonia.

Dystonia is a neurological movement disorder which affects adults and children. It can affect any part of the body and causes muscles to contract or spasm. This may cause pain, tremors, twisting and other uncontrollable movements. Some forms of dystonia are genetic but the cause for the majority of cases is not known. Link – What is Dystonia?

Watch the Interview! Source: Fighting Flinn – Being Human by Lily Cardis. We would like to give a special thanks to Lily Cardis for helping us raise much needed awareness for Dystonia.

 

Lee Pagan

 

Read further for more about Lee’s Story – Battling with Dystonia!

 

Lee Pagan was initially diagnosed in 2009 with Blepharospasm, which is a Focal Dystonia involving the muscles around the eyes.

Dystonia

She has now been diagnosed with Multi-Segmental Dystonia, which means that she has 2 or more body areas affected by uncontrollable and painful muscle spasms and movements.

Lee had to give up her career as a teacher, and many aspects of the life she once knew – particularly her independence. Her husband even had to retire to support her at home and to drive her to the various therapy sessions and appointments.  

When Lee was first diagnosed she went searching for Dystonia information and support and discovered overseas Dystonia websites and support groups.

That is how the Australian Dystonia Support Group came into being.

The Australian Dystonia Support Group continues to grow and are able to connect with more people with Dystonia. They now have lunches, gatherings and meetings in most of the capital cities, and are finally able to meet other Dystonia sufferers, in person.

ADSG has a fabulous Admin team and now also have an Australian Dystonia Support Group Website, a Facebook Community Page, a Twitter Page and an Email Distribution list. These additions enable friends and family members to read and understand more about this condition. The members are also able to access more information and medical updates relating to this condition as well as connect with other members.

They also have ADSG cards and Awareness Materials that are distributed to Neurologists, Health Practitioners, Pharmacies, etc. These materials have helped people find their group but have also lead to more education and awareness.

Lee Pagan stated that Ryan Flinn, a pro cyclist who rode across Australia in two weeks is amazing and can’t thank him enough for his efforts to raise funds and awareness for Dystonia.

Some of the ADSG members, families and friends have also been involved in awareness and fundraising campaigns.

What the public should know to better understand this condition!

There is so little known about the brain and there is even less known about Dystonia. It is an extremely complex, inconsistent, unpredictable and often debilitating condition. It can be a condition on its own or a symptom of another condition. Each person displays unique symptoms and we all respond differently to treatments. There is no cure.

When you take all of that into consideration I think we mainly want people to understand that:

  • Because it is complex and Neurological (which means that the initial problem is in the brain not the muscle) – we can’t ‘fix’ our muscles and get better – there is no miracle fix, but we all hope to find helpful treatments that will give us some quality of life.
  • Some people with Dystonia may look alright but inside the muscles are misbehaving and they are really suffering. There are some who are unable to walk or talk, and require wheelchairs for mobility and assistive technology for communication.  We are all so very different in how we display which makes finding a successful treatment quite difficult and very individual.
  • Because it is inconsistent and unpredictable – We may be able to do something one day but will struggle to get out of bed or function on another.

“I am one of many Dystonia sufferers. We all hope to spread the word and to gain some recognition and understanding.” Lee Pagan.

Related Links: 

Lee Pagan’s Story – Trapped!

Interview with Dystonia sufferer, Lee Pagan, ADSG Founder!

Deep Brain Stimulation (DBS)

Dystonia Awareness Video

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