Care4Dystonia, Inc.

Detective Malone was just told by his wife that she “doesn’t want to be married to him anymore. ” A murder is about to be shown on the television show ” Without a Trace”. But how can anyone react to such words ? They always come at the most unexpected times in our lives. It’s almost like me being married to an implantable device. It hovers, senses, reacts, and follows. Sort of what married couples do today. But then again with the divorce rate almost being 50 % in America, may be these couples aren’t doing anything of the sort ? I have felt like ripping out the device at times- to be free from it. A foreign object. Don’t people become distant and foreign to one another over time ? I really couldn’t tell you- I’ve never been married. Not so sure I would want to be, unless it was meant to be. Over time I’ve learned there’s no Prince Charming, it’s part of a fairytale. However there is Prince Trainable and Prince Changeable. Pray to God - Marriages are made in Heaven ( Count Leo Tolstoy ). It’s back to watching suspects being interrogated and munching on Italian Lemon Drop cookies before my mother calls ! MY NS agreed to a Head CT-Scan !

It’s cold, rainy and a good sleeping day today. I just came in from the post office after falling on the street. The last time I fell was way back in Winter. Stumbling and falling are clues to me that I need to be reprogrammed- volts changed, rates altered again. My neck is certainly twisting today. May I should blame it on the weather? I’m going to talk to my old neurologist about restarting MyoBloc injections. They helped me - incredibly so. Same dose, every 10 weeks. DBS wasn’t necessarily taking care of the neck twisting. So, I think it reasonable to go back to a few MyoBloc injections. My headaches are still there , but to a lesser degree today. I emailed my Neursurgical NP yesterday asking for ” a CT Scan ” taking into account that I’ve had these headaches since the Spring. Why not have things checked out ? But I never got a response from her except for a few questions pertaining to my symptoms. If the CT scan of the head is normal, that’s good , then we can figure out other things. My mother is apple picking today in Upstate New York. Wish I was there….

I’m listening to Belinda Carlisles’ CD ” Circle in the Sand “. Lyrics : ” Can you hear me calling ? Round and round, anywhere you go. Somethings are forever. Circle in the Sand. You complete the heart of me “.
“I’m mad about you. You’re mad about me. A couple of fools running wild. We start to see. Mad about You. Lost in your Eyes. You and I. Something about you. Pushing the night into the daytime. Summer between the two. Mad about Love. You and I. ”

There was someone I was mad about. A long time ago. But now, a new person has come along. I was mad about him. He was as well, just didn’t quite know or what to do about it. ” You and I. Mad about you. Lost in your eyes. ” A few years ago , never would I have expected this.

But now , a bit of madness existed in my life.
A good thing, I hope. ” Reason to Sigh. Mad about you.”

Well, Fall is going to arrive tomorrow at 12:03 am. Hopefully I will be in a deep wondrous sleep. And October will be around the corner in no time. So will my sister’s 36th birthday. I still have to find her a present and send it to her. The leaves haven’t changed in Central Park yet. All still remains green. But there is a chill in the air. The medical practice where I work has already distributed close to 600 Dystonia Awareness Magnets for me ( www.care4dystonia.org/magnets.htm ) this month alone. They were also going to do PSA announcements over their weekly radio show as well for October. Over the last year I have developed a wonderful relationship with Solstice Neurosciences ( www.solsticeneuro.com ) who manufacture the only botulinum toxin B = MyoBloc ( www.myobloc.com ). They were the first to get FDA approval for treating cervical dystonia in early December 2000. Now they are offering to help distribute dystonia magnets to all their employees. In addition, their employees are helping me with my goal of sending out 1,000 emails to Oprah’s magazine , O-Magazine, in support of a printable story about dystonia. They are writing directly to the Editor , Amy Gross - omail@hearst.com. I had been writing to her for 2 years now. This is true collaboration, in every sense of the word. Now, there is talk about a voicemail from me to their employees about October and Dystonia Awareness. I’m overwhelmed ! There are over 40 million Americans suffering from a movement disorder in the U.S. And one , relatively poorly understood one, is CERVICAL DYSTONIA. Never did I expect this much support. I highly applaud Solstice Neurosciences ( www.solsticeneuro.com ). Everyone with dystonia should be doing the same. I wasn’t competing with any of the other groups- just doing my ” own thing” . And not waiting for others to catch up. Time is short for all of us. Now, what am I going to buy for my sister ? Any ideas ?

I’ve been receiving letters asking for donations from multiple non-profits including the 5 main groups associated with dystonia. I felt like I was being asked to donate a rare form of blood. But, in truth, reading thru all the group sites ( except for mine www.care4dystonia.org - ok I’m biased, so be it, all non profits are !) each essentially had the same mission, same goals; yet none of them of talked to one another. No one collaborated with one another. I thought there was power in numbers ? May be not ? New groups were forming online - whether it was for research, new treatments, chat and support groups on a monthly basis. There seemed to be dissatisfaction to a certain degree with the current groups; some of whom simply turned their backs when questioned from members about certain issues. What did patients, people with dystonia and families really want ? Was that question being answered ? I just reviewed current distribution of funding- almost all of it was given to the DYT1 gene and the torsion A protein. This year I didn’t see iRNA involvement at all. May be I missed that one ? What about beta-actin proteins ? What about epidemiology ? What about the development of new treatments ? New focus, new visions ? Were members of all these groups truly satisfied with ” where their money was going ? “. I decided not to donate to any of the groups except to www.spasmodictorticollis.org. I didn’t have a rare blood type. I was O- Rh negative !

I’m now closing in on my second year with DBS. I passed my 1st Anniversary in December of 2004. It was a pivotal moment for me. To grasp the fact that I had an implantable device was simply daunting to understand on a personal level. Now Year 2 was coming around. And I was questioning whether I was making any headway with the device and programming. I felt somewhat disillusioned about the entire process. No one had warned me about the blasted headaches, overstimulation effects, programming frequency, waxing and waning of settings, antitheft detector warnings before the actual surgery. May be they did , but I didn’t hear it at the time ? I just read a Reuters’ Report , published today, that DBS could cause paranoia and other mental processing effects. The case had been focused on a young woman with epilepsy. I really didn’t care whether the case focused on epilepsy or any other disease. What caught my attention was that researchers had noted that the device could cause mental issues- possible effects that I doubt were being recognized by science. Hey - Scientists listen up - listen to your patients when they tell you about cognitive effects. I could tell that the past 6 months I did not feel like the same person I was a year ago or in my 1st year of DBS. I was becoming a person who I did not recognize. Is anyone else feeling the same ?

OK, it’s been 2 days now that I’ve been suffering from these blasted headaches again. They have been going on since the Spring. But my neurosurgical team has been dismissing them as being related to my ” being overworked in the ICU “, ” possible depression “, and ” electromagnetic interference when working in the ICU “. I came home after working 13.5 hours in the ICU. It was a dreadful night : six admissions and not enough nurses. But that is the reality of nursing today. I cant change it; no one can. You just carry on. But my head was pounding again. Sizzling at the top of my head where my 2 burr holes were located. Once home I collapsed on my bed waking up 5 hours later with some heavy-duty nausea. This was getting to be a bit ridiculous - the headaches and the reasoning behind them. I was not convinced that the reasons I had been hearing for weeks were 100 % true. They had never been concretely proven to be true. I felt that I needed a CT-Scan of the head. I called my mother long distance, she had enough of these reoccuring symptoms and the dismissal of symptoms as well. My own intuition as a nurse said that there might be possibly something else going on in my head. But no one was listening - except for my family. What was I supposed to do ??? Live with it ? I’ve heard that explanation for 18 years. May be a second opinion was warranted ???

Ok, probably those reading want to know a bit about me. First, don’t ask me my age - a woman nevers tells her age ! I’ve been residing in Manhattan since 1998, but am now ready to leave the City, originally arriving here for dystonia medical care and treatment. The noise , environmental, rental pollution seems to becoming pervasive here especially if you live in a studio without a balcony; or one that does not allow pets , specifically Labradors. I use my fire escape as a spot for a few flower pots. But my real English-type Cottage garden resides in Upstate NY , now entangled amongst weeds. I work 2 days a week at a private Cardiologists’ office www.fratellonemedical.com as a Nurse Practitioner and 2-3 days a week in the Open Heart Unit , the same Unit where Bill recovered from Heart Surgery, at New York Presbyterian Hospital ( Yes, this year we’re no.6 in the nation amongst the top U.S. hospitals ) working as an ICU nurse. The more equipment in a patients’ room, the better I like it. You could say I’m a problem solver. I have written 2 poetic books on dystonia titled ” I’m Moving Two ” and “I’m Moving On…Are U ? ” ( available on www.amazon.com ). I’ve become an anti-Bush fan especially after trying to run thru the traffic on the Upper East Side the past 2 days. I travel during every spare time, jotting in journals frequently. Next upcoming trip : Morocco. Robert in the UK convinced me to go- deserts await me as does peace and solitude along with a culture clash.But I’ve been to Dubai, the Turkish Riveria, Malta, Egypt and elsewhere. I never tire of exploring new sites. Now - you may ask - how long have you had dystonia - am counting on 18 years ! A journey in itself. beka, RN, ANP P. S I’m a flower fanatic !

Since running the non profit organization, www.care4dystonia.org, I’ve decided to begin writing periodic blogs for patients and families contemplating the procedure, Deep Brain Stimulation ( DBS ) for the control of their movement disorder. There are ” ups and downs ” to the procedure that neurosurgeons don’t clearly tell you about, the risk of complications and issues with programming. DBS is not a cure , only a patch or bandaid for the control of symptoms. One is not guaranteed immediate success, or even long term success for that matter. Regarding dystonia - there is limited outcomes data of what works best as dystonia has always followed a ” trail and error ” treatment approach by neurologists. Life changes after DBS- for some , it changes for the better; for others time is required to see an improvement. There are emotional , social and physical effects that one has to learn when dealing with DBS. As a practicing RN and Nurse Practitioner I will try to share as much as I can to my blog readers to minimize any over-expectations and disappointments ( Been there and done that ! ) I’ll add on scenarios about my travels across the world ( Saggitarians never stay in one place ! ) and other things about Life. Beka, RN, ANP