Sweet Home Alabama

Well after an entire day of travel, i finally arrived at my parents house in SE Alabama. I arrived in time for dinner and had time for my 4-year old to wind down before we needed to really head to bed. I arrived to see nothing worse than what i expected, but to find, none the less, that Dystonia had absolutely taken over my dad's body. I had always heard people with Dystonia talk about 'triggers' and such and quickly recognized that my dad's right hand/arm has become a trigger. For whatever reason when he uses his right hand or moves his arm, his legs will spasm.

I also quickly realized that my mother had almost had all she can handle 'alone'. Exhaustion has truly set in and being a care taker has taken its toll. I am getting ready to begin the home health battle, medical accessory battle, and any other battle that my mom and dad don't have the energy to fight alone.

The troops are here, and we've come a long way which means, we are that much more determined to make happen what needs to happen!

a first...

So today was a first for my dad's Dystonia. He ended up in the hospital this morning with spasms and pain that were unbearable and uncontrollable. This is part of the uncertainties of Dystonia. Spasms that take your breath away and never let up to be able to catch your breath can and do occur at any time. We have always heard about Dystonia patients that end up in the hospital with spasms and pain that is unbearable, but we never thought we would be there.

They are considering this episode of what my dad is having to be a Dystonia (or Dystonic) Storm. What an incredible description, because as with any storm, you have dark clouds, torrential rain, and winds that erratically blow and occur. As with this that is going on right now, my dad finds himself in a dark place mentally, torrential and unending pain, and spasms that erratically come and go within minutes of each other. The incredible part is that they think this storm has been created by a medication that my dad was trying to wean off of, that was OBVIOUSLY doing more than we realized. They have ordered him back on the medication and we are still aiming to the doctors appointment on the 2nd of May to start the DBS process.

The incredible thing out of all of this is that with some Dystonia patients, this medication doesn't even work, but with my dad, it obviously has triggered an episode that we never could have fathomed!

What is the point of me telling you all of this? Well, the point is that the fact that every person's Dystonia is individual and none of them react the same way to the same medications is one of the reasons that we need to advocate for information and education on this disorder. The ER doctor was NOT very familiar with Dystonia, the needs of Dystonia patients, or even the reasons and types of medications necessary to help control the spasms.

How do we educate the already educated? How do we publicly and without offense, have this discussion and open this discussion up to those who 'should' already know about this but don't? This needs to be researched and thought about and the best way is for YOU to start the conversation! Be your own advocate or be an advocate for those whose voice is being choked by Dystonia!

the ability in a disability

Well a few weeks ago my parents went through the craziness of making 2 of the three bathrooms handicap accessible for my dad. In doing this, they not only gave my dad the ability to take a shower on his own, but my mom the ability to not have to help him take a shower!

Now, let me clarify - this is not about my mom OR my dad, directly. This is about the freedom to move. My mother has no trouble or complaints helping my dad. She would do and still does everything in her power to help him without a single complain! And my dad is a trooper - doing everything that he can still do within his abilities - even if it takes him an hour to do a simple 10 minute task! They both are troopers in this situation! They are inspiration to me at how to honor your spouse and be there through 'sickness and health'.

But this is about a freedom that is so difficult to obtain for so many. To completely convert a bathroom into a handicap accessible bathroom isn't easy or cheap. This takes time, energy, and funds that so many people with disabilities might not have. The freedom to move is everything! Independence in your life helps keep you young, keep you functioning, keep you YOU! The one thing I have learned from this all is that a disability isn't always what keeps you in a wheelchair or housebound. But the way others treat you with your disability and the way you see yourself with a disability is what determines who you are through it all.

I have learned that I am not to treat my dad, or ANYONE with a disability as a disabled individual, but as an individual. I have also found that people with disabilities are the strongest people you will have met! They have overcome more obstacles than I can fathom and they can do much more than I can imagine! The next time you see someone with Dystonia, or any disability, do not treat them as disabled, but honor them in your actions towards them! There is a part of them that is strong and able in ways that you obviously cannot see!!!

Fear can help tell a great story!

Williamsport Sun-Gazette - April 9, 2013

I want to start this blog out by saying how proud I am of Karen Wright! What she did, allowing a photographer to take her picture and allowing a journalist to freely write an article about her Dystonia, is a scary thing that she forged through with bravery and class! I want to also, quickly, say my thanks to the Williamsport Sun-Gazette in not just writing an article about Dystonia, but for making it a bold, front page article, that will surely get some attention! Mike Reuther, the journalist who wrote the article, beautifully and accurately portrayed Dystonia in a simple and understandable light while still telling Karen's story and getting awareness out there for people who seemingly suffer alone with this disorder.

But the main reason for my writing this blog is to shed light to those who don't suffer, yet watch loved ones suffer, on the deep seeded fear that settles into so many of those who suffer with Dystonia. There is a fear that results from the multiple mis-diagnosis, insulting doctors, in-compassionate co-workers, un-educated medical personnel, and cruel public opinion of people who are 'different'. This fear is real and can be debilitating to those who allow it to settle into their hearts and minds. I think, too, that this fear is part of the reason that Dystonia is so vastly mis-understood or not known about at all!

BUT this fear is where those of us who are able and who have a love and passion for those who suffer should find ourselves called to defend and educate as many as we can on the disorder. They don't have to suffer alone or in silence or in shame, and we should encourage them to tell their story; we should hold their hand while they tell their story; we should encourage others to read their story; and, we should uplift them after telling their story, and encourage them to DO IT AGAIN!

Let us, also, though, remember to consider people with Dystonia with a compassion that, we who don't suffer, can't understand but yet muster up this compassion anyway. As often as we walk with these loved ones to the doctors offices, listening to diagnosis, hold their hands during treatments, and cry at the unfortunate nature of the disorder, we still do NOT know how they feel! I have no idea how my dad, Karen, Mrs. Daisy, Pamela, Carrie, and so many others that I have grown to appreciate, care for, and respect, feel! I have no idea what they are going through and what it is like to have the plethora of emotion that is churning around inside of them. But what I do know is this: I have been given an opportunity to help tell their story! I have been given the ability to be able to travel without pain, speak without difficulty, type without spasms, and live without Dystonia to be able to help the tell the story of Dystonia to the world!

Tell the story of Dystonia - even if it isn't your story - and help shed some light on this disorder and give confidence to those who suffer to tell their own story and help someone else!

what about 'them'

Well, let me start this by saying that I am absolutely not a counselor or a doctor - I'm just a self-employed graphic designer with a passion for people and a drive to help others! This is one of the main reasons that I have started this blog!

Don't get me wrong, there are lots of blogs out there for people dealing with this disorder: ones that I love to read, laugh with them in their adventures, cry with them when they feel like they've failed, and I've supported them in my comments and prayers for them! I hope, though, that my blog will bring light to another side of Dystonia that seems to be so quickly and easily overlooked - the side of the loved ones watching this disorder take over the body of someone they love dearly! For those of you with Dystonia, you have family and friends who are watching this and experiencing emotions, fears, frustrations, and stressers that you can't imagine just as we can't imagine walking in your shoes through this disorder.

So share this with them! Those who love you and want to support you - those spouses who want to know if it is ok to cry over you, those friends who want to know if it is ok to be mad that you are having to make this journey, those siblings who want to know if it is ok to get frustrated at your disability.

Dystonia is a disorder that affects all who are involved in some way. And there is support for every aspect of the disorder! If you are affected indirectly with this disorder or know someone who is, share this blog with them and tell them to subscribe to the blog or even reach out for more information on how to get support for them! We are all on this journey together!