For those of you who don’t know me, or have read my blogs – I do not and will never capitalize dystonia because it’s not a proper noun and there is nothing proper about it. You may respectfully disagree with my opinions, that’s your prerogative but don’t disregard mine because I have dystonia and know how crippling it is.
I can’t remember where I read that dystonia is the suicide disease but it didn’t come from me, whoever made that statement that has as much credence as those positive, inspirational, feel good stories I read and have posted in previous blogs. I sincerely respect the fact that people share their stories and continue to search for hope, doctors advocates, foundations and scientists, hopefully using their monies to finding a cure but MORE must be done.
As you digest the above paragraphs, I was recently placed in a hospital for a blood clot that formed as a result of sloppy home care nurse treatment, I will not reveal the name because I would rather not have the aforementioned lose their job but I will make dam sure this person gets a copy of this blog. As upsetting as that was, 99% of the un-named hospital staff had no idea what is dystonia. 2014 and I encounter doctors, nurses, etc… who have no clue about dystonia. That means the foundations need to step up and do more with awareness – Immediately. If you”re part of a foundation – This should be disappointing, alarming and a wake up call.
Why write this? Because all dystonia foundations need to regroup and rethink how, why and what we are all doing with raising awareness and monies for research. So, Yes! I’m calling out all foundations to get your plans and reevaluate where you are and what you’re doing to help find a cure!! Give us Hope, Give us something to believe in. Am I angry? – YES, despite the setbacks of 3 infections, 3 brain surgeries, all hardware removed from my body. To put in LayMan’s terminology – I’m in Hell and beyond – Now I can understand why someone labeled dystonia the suicide disease. As you read, no I’m not suicidal but I expect more and want all these foundations to not just try but try harder and promote the truths and not just the feel good stories that emphasize the fight and inspiration but seek the Best Scientists, Doctors, researchers, and foundation leaders to exhaust their powers and whatever you’ve done is not enough so either change how you’re going about your business, try something different or seek a new career. The definition of Insanity is doing the same thing over and over and expecting different results.
Most of my blogs are written to give hope, humor and help understand the destructiveness of dystonia. I had the privilege of having enough dystonia relief the past 3 years to return to part-time coaching basketball and competing in triathlons (in a very alternative style but nonetheless completed 5 sprint triathlons)
Advocacy Day – Unfortunately I could not attend because my neurosurgeon disregarded my fear that I had an infection – which I did and had to seek another Neurosurgeon,Dr. Ron Alterman to remove the infected hardware (which was a life threatening situation) Thank God, my first trusted Neurologist, Dr. Vitek arranged my transfer to Beth Israel Deaconess Hospital in Boston.
Batteries out, wires out, dystonia is back with a vengence, taking 32 pills per day, making me a complete zombie, pic line to administer an antibiotic that makes me sick daily and taking blood thinners for the next 3 months, blood tests, Dr. visits, and wasting the majority of my Summer in hospitals as if I were a voodoo doll. I’m not complaining because I know I’ll come back and be stronger-Hopefully but I would be remiss had I not shared the ugliness of dystonia. And even more unfortunate I trusted a doctor who did not listen (Can’t elaborate too hurtful to discuss). This is so alarming to me because if I didn’t have the resources of great Doctors cell phone #’s – I’d be Dead! No exaggeration. Ask questions, read as much about dystonia, get Doctors cell phone #’s and don’t be afraid to seek other Doctors if something doesn’t feel right. The patient has the power to choose – It’s your body and your life – Trust your gut.
I’m trying to stay positive and stay upbeat but I’d be a liar if I didn’t write this blog to make sure whoever has dystonia or reads this – be careful and seek the Best Doctors and/or reach out to others with dystonia. There is a severe ugliness to dystonia that affects people, (depression, isolation, embarrassment, and more serious side effects from dystonia and the drugs that are prescribed).
I hate to be negative, angry and share the Hell I’m going through but felt an obligation to make sure the truth gets out. I am not seeking sympathy or prayers – I feel a responsibility to share and help. There’s a lot here – Digest, reread, and feel free to contact me with any questions/problems/concerns. I am still and will always be an advocate but – Truth must be told – Foundations need to work harder.