A few weeks ago I posted a link to this blog in a few dystonia support groups. Then I asked if anyone would be willing to let me interview them and post their answers on this blog. To my surprise many volunteered. Several agreed, this might be a good way of helping promote more awareness for dystonia. I sent out a basic Q and A and Ian is the first of many wonderful people to get back to me with his answers. Please take some time to get to know what it is like When Your Body Betrays You.
This is Lorraine from Earth, but let her introduce herself. I usually edit the first two questions, to introduce the person, but her responses made me smile:
1.What is your first name? You can provide a nickname for me to share online.
Lorraine. Anything I have on-line I use Siren, Siren 116, Siren16 or something like that, Siren has become my alter ego.
2.Where are you from? You do not have to be very specific.
Oh well then…Earth! A little more specific? Kentucky.
3. What is your current diagnosis?
Oh lord, would you like them alphabetically? Dystonia, of course, but I also have Lyme Disease, Autonomic dysfunction and a quite a few other conditions that include multiple systems such as my brain.
4. What is your biggest worry living with dystonia?
Dystonia sneaks up on me when I least expect it and it also attacks when other things are already at their worst. Stress sets it off. What I mean by it sneaks up on me is that I may not have any symptoms for days, or all day that day and out of nowhere, my back locks up or I get violent spasms in my arm that if standing in a public place might take me to the floor or make me yell out. It is very unpredictable and I say I will get rich on a pain pill that works NOW because my pain gives me no half hour warning, what good does relief do that comes a half hour later?
5. What is the hardest emotional thing to deal with while living with dystonia?
For me, emotionally was it started in my face. My face contorted and I did what we called “chewing air”. I knew I didn’t want to be seen like that, but when Thanksgiving rolled around and taking pictures with my kids, I got caught with a contorted face in one picture. I was alarmed and embarrassed. Secondly, I have always been rather strong and independent mostly because of the job I do, I am/was a Paramedic and it has taken away all my strength.
6. What is the hardest physical thing to deal with while living with dystonia?
The loss of independence, the loss of my career, my life, my freedom. I need help with so much that I never needed help with before. I never had to ask anyone to help me lift or carry anything unless it was bigger than I was and going up or down steps and then it was questionable. I moved my Mother from one nursing home to another in two days, just me and my truck, bed, couch, dresser, the whole package. I was that strong and determined.
7. What do you wish people knew about dystonia most?
I have had Lyme Disease for at least 17 years and it took me down on more than one occasion. But I always got up and I felt it coming. The weakness, the fatigue, the general feeling of being unwell. Dystonia snuck up on me. It started in my neck and head at night when I was trying to relax and try to sleep. My neck would hyper-extend like it was trying to touch my back and my face and neck would tense and my teeth clench and all of a sudden I would realize I was like that. I would have to consciously relax and reposition or my neck and head would start to hyper-extend again and I would repeat this cycle until I fell asleep. I didn’t do anything about it or tell anyone and I most certainly didn’t consult a doctor about it and to this day I have no idea why! I know better!
8. What do you not like to hear when someone is comforting you or caring for you during a dystonic storm or episode?
I have never had a full body storm and it sounds like hell on earth. I have had my whole back lock up, my chest and back lock up for about 45 minutes to an hour and could do nothing, but rock and type for help to get through it and I was minutes from dialing 911. I have had violent spasms in my left arm that felt like a bladed electrified, baseball bat hitting me repeatedly for about a half hour, the first time than shorter periods a few times since then. My legs have been locked up/spastic for almost three weeks to the point that by the end of my shift at work I had difficulty walking, but to actually have full body involvement, I would probably want to hear someone walking quickly in the other direction.
9. What is special about you that you want others to know that has nothing to do with dystonia?
Anymore, there is nothing that has to do with me that doesn’t have to do with Dystonia. Before September 2015 there was nothing about me that resembled me now with Dystonia. If you had two of me, you would have book ends.
10.What is special about you because of dystonia?
I have a lot of friends that live in the computer.
11. Do you have pain because of dystonia?
Yes. It changes all the time. It comes out of nowhere and takes you a minute to realize what it is and pain medicine is useless against it for the most part because either you take it all the time in anticipation of hurting and walk around half buzzed out of your skull, sleeping more than not or you try to play catch up to the pain, which is a waste because by the time the pain medicine kicks in the pain is gone or going or you are falling asleep from the pain medicine, which is a waste and pointless unless it is time for bed in which case you could have just laid down and the pain would have stopped when you fell asleep.
12. How do you handle the pain?
What are my choices? No medicine will get to it in time, you can’t take it beforehand etc.… You just have to grin and bear it. Try to get into a more comfortable position, get away from a lot of people just in case there is going to be screaming and yelling, rolling around, throwing things, cussing and whatever else involved. Maybe take something for pain if you think it will actually help, call someone or similar to talk you through, cry, beg that this time it doesn’t turn into a full body thing or last for too long. Hug the dog, contemplate removing said limb and bashing it against the house or if it is both legs like it is in my case sometimes, ripping one off and beating the other one and last, but not least flailing around flexing and relaxing in hope that it might help in some way.
13.When your body shows physical symptoms of dystonia, how do you handle the stares and worried looks from loved ones, friends and strangers?
You are unable to embarrass me, I will hold your hand and skip through Wal-Mart…okay a respectable store, singing at the top of my lungs and have, with my children, ask them. I really honestly couldn’t care less. It annoys me to have people in my business. When I can’t walk and need help, I will learn to use my arms more or crawl or stay home or something besides the fact that no one gives me worried looks or is concerned.
14. What kind of treatment have you been given for your diagnosis?
Treatment? I got the fastest most accurate diagnosis I personally know of and was put on poisonous, dangerous medicines that the drug companies that made them warned physicians to keep a close eye on patients who they prescribed these medicines to and left unattended (three appointments in six months) until I had lost the first job EVER in my life because of my cognition and then was told by the prescribing neurologist to my face that I was a “Mental case not a medical case” although she arranged an appointment with a Neuro/psychologist for a cognitive study in which he determined that I was severely cognitively impaired due to the medicines, which had not only cost me my new job but got me put on administrative leave from my 25 year career. I am home now and have been for 6 months and about to lose my job, while being denied long-term disability coverage because “my case does not support long term disability” says an insurance company perhaps one case shy of a class action law suit for denying benefits and recognized by the supreme court for their questionable practices while disallowed to return to work by any physician but not receiving any specific care either with the exception of pharmaceuticals. I have accumulated an unknown number of diagnosis’s that involve virtually all organ systems including my brain which was found to have suffered damage from a cause yet to be determined.
15, When were you first diagnosed? Have you been diagnosed? How long have you lived with the symptoms? Have your symptoms progressed?
September 2nd or 3rd 2015. I was working, I am or was a Paramedic and my partner and I were on our way to a standalone ER to pick up a patient when I had what is commonly referred to as a dystonic reaction. My face, head, neck and shoulders began to spasm to the point that my shoulders were basically stuck in my ears. I walked into the emergency room and told my friend Bill the Nurse Practitioner that I needed him and he turned around and looked at me and said the obvious and sent me to room 7 where I was tackled by the ER staff, who I all knew. Was treated, admitted, saw a neurologist that I was supposed to see in October because I finally complained to my GP that I was having facial “tics” and she rapidly diagnosed me with Dystonia. I was kept in the hospital for 3 days while they tried to stop my spasms without success and then they gave up and let me go home. I have lived with Dystonia since sometime around spring of 2015 I believe. My symptoms have changed. Progressed? That really depends on what hour of which day you ask me. I don’t typically think they have progressed. If anything they have subsided and become less constant and more episodic but more violent and painful in nature. They were more bothersome and constant, annoying and embarrassing now they are random, momentarily debilitating and can be dangerous.
16.What do doctors think is the cause of your dystonia? What do you think is the cause?
With the exception of the speedy diagnosis, which may have been a fluke, source considered, I have yet to meet a clinician who has “treated me” for Dystonia who deserves the title “Doctor” Since I have been off the mind altering medicines that the diagnosing/non-treating incompetent neurologist gave me, I have basically self-treated with Benadryl which is fine with my now pain doctor/ neurologist who has shown more interest in doing procedures on my back for pain that I have tolerated well for 24 years and who’s staff is unsure why I see the doctor. I have an appointment on September 13th at the closest big teaching university’s neurology/movement disorder clinic where I am to see my first real Dystonia Doctor! So as to your question, any opinion formed by the clinicians I have seen thus far means not squat. I however, have done a thorough examination and patient interview and history and believe I know the cause of my Dystonia. February 21st 2015 I was in the back of a quite large ambulance, transporting a patient on a ventilator, cardiac monitor and a few IV pumps to a bigger hospital for more definitive care from a small county hospital as I did day in and day out. As we were approaching the second hospital my partner said “oh no she is going to hit us” and then I heard this God awful noise and was thrown up over the patient into the cabinets and that is all I remember. At the time I remember writing in my incident report where I landed and I do remember taking the cardiac monitor off the patient’s stomach and that she had hit her head on the cabinet. I know the facts of the accident. A girl in a white car was going too fast, hit a patch of ice, lost control hit us, like a police officer would do a pit maneuver and sent us spinning on a 3 or 4 lane portions of the road where two highways meet and split again on a bridge. I also know that we spun 3 or 4 times and hit the concrete barrier(s) but I don’t know how many times, I just remember the noise. I know after the accident we had to transfer the patient to another ambulance on the highway and I had to stay with her and continue to the hospital although I had had my bell rung. Once we got to the hospital, one of my co-workers suggested I was checked out and I had difficulties in the back of the squad after that and considered counseling and ultimately stepped down from 911 in July and began doing just transport for 12 hour shifts instead of my 24s because I felt something coming on. I have heard that a trauma whether it is physical or emotional can set off Dystonia and I believe that wreck qualifies as both.
17. What have you learned about yourself while living with dystonia that has helped you become a better person?
Absolutely nothing. I have lost my life, my career, my freedom. I have become unable to care for myself at times. Some things about me have not changed, but nothing has gotten better. I simply exist anymore, I do no one any good. I have nothing, physically that is unaffected by disease. If it weren’t for my husband I would be on the street in a cardboard box. Everything I have worked for my entire life is gone and I can do absolutely nothing about it. I have to depend on other people to fix my problems for me.
18.What medication or treatment has worked best to treat your symptoms?
Benadryl. I seriously doubt anyone will get me to take anything else. I haven’t had a bit of trouble with my sinus since taking it either. I lost most of a year because of a careless incompetent neurologist and her treatment skills and bedside manner didn’t help. The fact she diagnosed me on the fly is just astonishing to me and has to be a fluke.
19.Other than prescribed what seems to tame your dystonia?
That one I have to think about. Sometimes just changing positions which isn’t always feasible, remaining absolutely motionless because if you literally move a muscle, you will set it off. Other times nothing, nothing at all.
20.How has dystonia affected your life? Your work? Your life at home? Your social life?
Oh wow, I think we have way past opened this can of worms. Destroyed! Destroyed! Home life isn’t so bad. I am home with my husband all the time. I have my dogs. I am comfortable and warm or cool and fed. My son stayed with me for the first 4 months I was off. I love my home. I never had much of a social life since my kids hit adulthood. They were my best friends and we did everything together other than that I have always been a work-a-holic. I loved my job.
21.Are you part of any support groups? If so, has this or these support groups helped you? If so how?
Only about a dozen or so on Facebook and that is typical behavior for me. I have always had my head stuck in a computer since I bought my first one, why change now? Yeah they help, if it wasn’t for my friends inside my computer I would be here with my dogs, my husband keeps busy, he is much better at this being home thing than I am. I would be alone…I will leave it at that.
22.Why did you agree to this interview?
I never shut up. Whether I am talking or writing my gums are always flapping or my fingers are always moving, this just gave me a purpose, that and I like to talk about myself and of course I like people to know what really has happened to me.
23.What is your best or worst story that has to do with dystonia?
No doubt about it, no contest, the swimming story. I love to swim and went once last year and barely splashed around for 10 minutes and then almost couldn’t get up the ladder because I was that weak already that early into my disease and it scared the crap out of me.
24. Briefly describe what a typical dystonic day is like for you?
Get up at the crack of dawn, either fall out of bed or awake falling out of bed (about half the time) get on the computer unless I feel weird then I take my vitals first and take any appropriate medicine. Take inventory, what hurts? where is the heating pad? do the dogs need to go out? Is anything missing? Car and truck here? Husband up? Sometimes grab my little girl dog, who likes to be snuggled and curl back up to sleep. Look around at all the things I need to do and decide I will do them later or tomorrow. Make a mental list of what I need to do after I figure out what day it is, sometimes have to consult the calendar upstairs (I am a basement dweller, biggest bedroom in the house, has two closets, right across from the laundry room also has the biggest bathroom and access to the great room and is a good 10-15 degrees cooler than upstairs) work on something on the computer, always have some project brewing and I am 10 times slower than I ever was so everything lasts me much longer. I also work on computers so occasionally I have one to fix if not my own (windows 10 is evil). If my husband goes out I may go to the desktop in the great room where I have recording equipment and sing, which I love to do and am pretty skilled at technique wise, but don’t like my voice, love the feeling of belting it out though. Go to the store or pharmacy or where ever and make that last all day, maybe nap. Do dinner, more of the same from the day, stay up way too late, rinse repeat.
25. Please share one really good joke.
Oh this is really easy. There are three people walking down the beach, a Doctor, a nurse and a Paramedic and they come up on a lantern so the doctor picks it up and rubs it off and a genie appears. (you knew this, right?) The genie says I will give you each one wish, what is your wish sir? Well the doctor says “I want to be a million times smarter” POOF! He becomes a god! So the paramedic picks up the lantern and rubs it and the genie appears, she says I will grant you one wish, what will it be? The Paramedic says “I want to be a million times smarter” POOF! They become a Doctor! SO the nurse being the only one left on the beach, picks up the lantern and rubs it and the genie appears and says, I will grant you one wish, what will it be? The nurse says “I want to be a million times smarter” POOF! They become a Paramedic!
Lorraine would also like to share the link below of a video of herself early in treatment when facial spasms were still prevalent: https://www.facebook.com/lorraine.allisontraylor/videos/vb.1228664815/10205962078190910/?type=3&theater
If you have any more questions for Lorraine or about Dystonia please leave a comment in the comment section or send me an email through the contact form. If you have dystonia and would like to be part of this Q and A please send me an email.