My time to post these days is limited. School has me exhausted with studying. What I will say is this. I have spent a lot of time crying in his arms as I struggle to face the dystonion possession of my body. He keeps asking me why I call dystonia a “she”. I laugh and tell him because, “She is a bitch!” She has taken control of my body and I can’t do a damn thing about it. He hugs me. He tries not to cry in my arms, but I can feel his sense of helplessness. He wants to fix it. He tells me over and over he wants to do something to help me, but he can’t and I can see that look of worry on his face.
I wish I had something profound to say. I wish I could hook you with my first line and then reel you in for the rest, but truth be told I am tired. I am too tired to blog, too tired to think. Since I began school I have forced myself to make time to open books read and study. To make time to post on here is even harder.
This past weekend I missed out on a fun bow and arrow target practice weekend with my kids and the sweet man in my life, so that I could stay home and study for another test, another practical. I aced it by the way (95 Sweet!!!), but that was just one of many I will have to sacrifice weekends for. That was just one of many that will make me grumpy, tired, scatter brained and envious of others free time. Before my biggest fear was how dystonia would keep me from graduating and practicing, but lately I wonder why I have chosen to add additional stress to my life. Wait!!!! Didn’t a super experienced doctor with a lifetimes worth of experience tell me that my dystonia was stress related???? Wait what? If I was ever more stressed it would be now. It would be now when my grades determine my future as OTA/OT. More than two C’s and I can get kicked out of the program. This is no joke. I have had panic attacks over it. My grades determine if I stay in or I get booted out. If I get booted out there goes all this hard work I have already put in to a better future, for my kids, for me, for us. Don’t let the sweet faces of my instructors fool you. Then of course, there is always that underlying stress of if my grades are fine dystonia will decide to suddenly show her nastiest face and render me useless. Everything I have read about dystonia and it usually says it will get worse according to experts who have no idea what it is or why it happens.
I’ve told myself (you know those pep talks) to take it one day at a time. If I can work as an OTA for at least a year and I make a real difference in someone’s life while doing it than that is more than I thought I would be capable of doing when all this started two years ago. I had no clue at all of what was going on with my body. I’m not dieing (pep talk), sometimes it feels like I am, but I am not. I also like to remind myself that maybe because of my dystonia I will be more compassionate and understanding in my line of work especially with anyone with neurological disorders. This last part is not pep talk. I honestly believe in that respect dystonia has helped me be more compassionate and understanding and even more knowledgeable of the human body, especially mine.
Today was a great boost for my ego too. Not only did I do a great job with our interview-to-make-a-personalized-craft-gift-tote bag assignment, but I also realized what a beautiful thing it was to do, how something so small can really help lift up someone’s spirits and make them feel valuable. The bag made for me by my classmate was so touching I almost teared up but I held it in. The bag I made for the classmate I interviewed helped bring out my stick-man creativity and hoped that with it I could help uplift her if even for a little bit from her woes. I am so thankful my instructor had us do this assignment. It is REALLY nice to have fun assignments between the medical terminology quizzes and the practical and chapter exams. I can’t wait to continue my growth project (I am learning how to make mosaics) and then move on to the clay project.
I like that not everything in my life is about dystonia anymore. For awhile my life revolved around dystonia. I obsessed about it or went into complete denial about. Sometimes I cried for days about it, other days I was just happy to get be able to walk or breath normally. Not being able to breath really puts a lot of the petty things into perspective.
Since I stopped teaching my weekly fitness classes and not doing as much martial arts my dystonia has improved. I haven’t taken a pill in about week. My boyfriend has noticed that too. Does that mean I can’t exercise? I hope not because then my muscles will atrophy. It is sad to watch the muscle I worked so hard to build turn into just skinny.
Is it gone? No! It has improved, but it hasn’t gone away. Its still there. I have had period like this before when the dystonia is barely noticeable that I can barely feel it, not even the numbness, tingling and weakness and then it comes back with a vengeance. Even today during the practical, I lost my balance standing on my left leg (demonstrating mm strength for pelvic tilt). Everyone else thought it was because I just lost my balance but I know deep down that weird feeling I felt standing on my left leg like that was all thanks to dystonia. Luckily no spasm followed.
The last time I had spasm and trouble walking was at the dojo last week, before that I had been to several practices with no problem, but last week was different. I was doing great. I kept up with everyone and did what I had to do. Then half way through practice my leg froze and my foot rooted. I could not take another step. All of the black belts and most of my classmates understood what was happening. When I couldn’t pick up my leg or foot off the ground and we all had our little giggle, my instructor helped me walk backwards (left foot in foot drop and painfully dragging) to get to the wall and rest. My left arm locked up too. The rest of the class went on and I watched in some envy and hope that if I concentrate long maybe I can visualize into physical practice eventually. If only I wasn’t so much of a hands on learner. My boyfriend can see a move once and pick it up like he was born to know it and me… I use to have a little bit of that. Now its hard for me to connect my mind with my body. I use to be so determined, so strong, so… Now it is so hard to keep myself from quitting. The stares, the embarrassment, the frustration, my ego…
But today was a good day and that tiny loss of balance was no big deal. At least my leg didn’t glue itself to the floor. Tomorrow I will go to work and then take another stab at the dojo. Then on Wednesday I will go to school and I will keep going until I can’t go anymore.
Sitting here in my Ford escape, parked under the few small tree/bush shade available,
about 15 minutes before work I’m thinking about dystonia. I’m thinking about the pictures I just saw on Facebook of a little girl with twisted legs. Her mom in the dystonia support group is wondering if loved ones ever get over seeing a loved one like that. Do they? Do you ever get over seeing your loved ones spasming, twisting, twitching, struggling to breath, often in pain or sometimes struggling to eat? Do you ever get over looking at the pain on our faces? Do you ever stop feeling helpless, angry, confused, exhausted taking care of us? Do you know how often we feel like a burden to you (this is our constant worry)? Do you ever notice how embarrassed we are because we worry how we look (hideous) and sound (stupid) to you? Why do you stay?
Since dystonia, especially during dystonic storms I worry about how I look a lot. I’ve never had an amazing self esteem, but it really sucks now. I know its vain, but it is a true emotional worry of mine. When my children see me or my boyfriend sees me with my limbs twisted and my hands contorted, my eye twitching and I struggle to breath I feel them looking at me and I want to hide. I want to move to another room and be alone during my spasm, except I can’t always get up and walk and so there they are looking and trying to help, feeling helpless and I am begging my children to look away because I don’t want them to see me this way. I want them to see me normal. I want them to keep that vibrant healthy strong image of me. I am suppose to care for them, to help them That is the natural order of things.
I am begging my boyfriend to let me be because I don’t want him to see my zombie walk, my twisted arm, my hunched back, my locked jaw. When we first started dating I remember feeling his stare as he watched me walk. He would come to me and place his hands on my hips. He made a comment once or twice back then about the way I moved. I remember moving a little slower so he could watch a little more carefully. I can still walk sexy most days, but other days it’
s a good day if I don’t fall over a twisted drop foot.
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 Missy is one of the wonderful people to get back to me with her answers. Please take some time to get to know what it is like When Your Body Betrays You.
2. What is your biggest worry living with dystonia?
Being a burden on my family.
3. What is the hardest emotional thing to deal with while living with dystonia?
That I have lost my independence which requires me to have to ask for or pay someone to help me. I cannot do things with my children like I use to. This makes me sad for our youngest daughter, she is 12 and we stayed on the go before I got sick. We would take off for girls days or weekends all of the time.
4. What is the hardest physical thing to deal with while living with dystonia?
I would say driving and talking. I’m not sure if this qualifies but I cannot be in an environment that has lots of movement and stimulation. Grocery shopping is very hard, PLEASE don’t make me go to Wal-Mart, but the hardest one is church.
5. What do you wish people knew about dystonia most?
That it is real. It’s not a choice that I have made. As of yet I do not have a way to suppress it and it causes extreme loneliness.
6. What do you not like to hear when someone is comforting you or caring for you during a dystonic storm or episode?
Did you take your medicine? It makes me feel like people think you want to do this to your body intentionally. I try to stretch my dosage out to make it through the day, but I can normally tell when it’s time and if it’s not I try to hold off to get closer.
7. What is special about you that you want others to know that has nothing to do with dystonia?
I am an intelligent, independent person that is driven to succeed. My faith in God is very strong, my family and my children are my life. I have spent the majority of my life trying to take care of people and make sure they knew they were loved.
8. What is special about you because of dystonia?
For some reason I have always known that God was with me and He is going to heal me. I believe that this is a journey that I must take for self-improvement, to help others find easier ways to get diagnosed or I hope to help find some medical breakthrough. I have tried to look at things from a positive point of view, which is not always possible. I have been blessed that God has brought some wonderful people into my life. I call them my “Earthly Angels”. They have been there to help me with so many things. This has been a humbling experience. I have learned to accept help instead of being the one helping others. I have been blessed to watch God change people’s hearts as the Dystonia has continued to weaken my body, but strengthen my faith.
9.Do you have pain because of dystonia?
No, not really pain, I get very uncomfortable and I have a massage therapist that helps me tremendously!! I understand that so many people live with terrible pain. I cannot imagine how difficult that would be on top of the issues I personally go through.
10. How do you handle the pain?
I try to rest if possible. If it’s muscle related then I will try massaging it, stretch it or take ½ of a muscle relaxer.
11.When your body shows physical symptoms of dystonia, how do you handle the stares and worried looks from loved ones, friends and strangers?
If I’m going to be in a group of people I try to wear sunglasses to hide my eyes, my eyes are the first to go in a crowd. When we are at a friend’s house I normally ask in advance for a place I can retreat if I get “overload”. I avoid large crowds as much as possible. I do not go out a lot and I have very few places that I will go alone. No one usually asks but I tell them as much or as little as they want to hear.
12. What kind of treatment have you been given for your diagnosis?
Medication and Botox injections
13. When were you first diagnosed? Have you been diagnosed? How long have you lived with the symptoms. Have your symptoms progressed?
I was officially diagnosed in December 2014 with Blepharospasm and yes it has continued to affect different portions of my body. Every time I was told it does not normally move any further within a visit or two it had began to affect another area.
14.What do doctors think is the cause of your dystonia? What do you think is the cause?
There are so many maybes, that unless you know you have family member(s) that have it which would make it hereditary there does not seem to be a way to know for certain. Maybe a medication you had taken, maybe a fall or injury…? I have begged for tests, but apparently there are no test to determine if you have Dystonia, but they can rule out other medical conditions. I am clueless. I do know that during stressful times it’s a bit worse. So, I do believe stress is a big trigger factor, but as far as why me? I have no idea.
15. What have you learned about yourself while living with dystonia that has helped you become a better person?
I did not know how to relax my mind or body. When I would sit down I was normally thinking about something I needed to do. It was very hard to do, but now I’m pretty good at it. I am lucky if I can get still leaning back, close my eyes for a little while and can then turn everything off. It does not always stop, but it helps. My children have become more independent, which is a good thing, because I think I have over mothered them. It has been the most difficult on my husband. He has had to incorporate so much of of the things that I can no longer do or require assistance with to help me, all while he is still working hard. We have both been through some pretty tough issues in the past few years, but thank God He gives one or the other strength to hold each other up on really bad days. I think it will make our 27 years marriage stronger.
16.What medication or treatment has worked best to treat your symptoms?
Botox treatments for my eyes, neck and vocal cords.
Valium – this helps with anxiety and includes or helps as a muscle relaxer.
Zanaflex – I take this if I get overstimulated and it helps calm the storms or episodes.
17. Other than prescribed what seems to tame your dystonia?
Massages. They make a big difference if I can keep up with them. The spasms cause knots in my muscles and I can normally breath better after the muscles around my ribs and chest area!
18. How has dystonia affected your life? Your work? Your life at home? Your social life?
It has changed everything. I cannot participate in my daughter’s school activities, watch both of my children perform at musical events. Cannot watch television, read for more than a few minutes, very limited driving (we even moved closer to town so I would be close to our daughters school and town). I’m pretty good at typing with my eyes closed and I am very thankful for spell check!! On occasion it will change my words up on auto correct (that’s my story and I’m sticking to it). I can drive for about 5-6 weeks between my Botox treatments, but I do not drive very far, it’s still difficult and wears me out. I have a hard time breathing, talking and eating most days. It was very rare for me not to get up and get ready for the day, which was dressed nicely, hair and makeup done. Now I have to do everything in shifts. I have invested in a few really cute hats, so with a pony-tail I throw a hat on. It is also minimal makeup most days. I cannot pluck my eyebrows, which is minimal, but drives me nuts!
I am not working now and towards the end I was able to get a college student that was awesome to help me. She would read emails and type responses for me and even drive me around. When my symptoms progressed to where I could not focus to read, talk without running out of breath or I’d have to stop and take a rest was when I started talking with my employer. I talked to my employer to let them know how things progressed and they were great to work with me the best they could. It finally got to the point that I questioned and I doubted my ability to make solid decisions mostly because of the medications I was on. I have been on private disability for the past year and I am still working with Social Security to try to get approved there.
19. Are you part of any support groups? If so, has this or these support groups helped you? If so how?
Just this group on Facebook. South Carolina does not have a support group set up. When I get stable or better I want to try to establish one. I tried joining a few, but the Blepharospasm group said I needed to be in Dystonia and the Dystonia group said I belonged in the Blepharospasm. I posted a few questions on each and the majority of the responses were very negative. I tried reading through their post to see if I could gather information, but again it was pretty negative. Needless to say I have not joined any new groups, but one day I found this group on Facebook. I loved that they share, support, and many even have bonds. It has been wonderful to ask questions, get answers or suggestions, and even people praying for you. I have become very attached to this group and I even feel like I can offer input from my experience.
20. Why did you agree to this interview?
More people need to know about Dystonia. I saw so many doctors that should have known about this and instead so many doctors told me it was all mental, that if it was Dystonia I would die in 5 years, which we know is not true.
21. What is your best or worst story that has to do with dystonia?
Best day was when I finally received affirmation from a Movement Disorder Neurologist and my husband was with me. I think we both needed validation. I cried when we left because I was so grateful that I finally found a doctor who understood, but I was also sad because I knew this was real and it was going to be a hard road. The worst story, my husband was diagnosed with Prostate cancer when my symptoms were very active, by the time he had his surgery I was functionally blind. We went to Florida for his surgery and I could not take care of him. Thank God our oldest son took off of work and went with us. He was a blessing! I was there but he guided me around and took care of his Dad.
22. Briefly describe what a typical dystonic day is like for you?
I feel like my days revolve around medication schedules, doctor’s appointment. I have good days and bad days, I try to pickup the house and do laundry. I have two sweet ladies that I call my Earthly Angels that come once a week to keep the house in order. They will take me to the doctor appointments. I try and rest up before my daughter comes home from school and my husband comes in from work so I can focus on them. I have found a few restaurants or cooking services that will deliver cooked meals. It’s actually a pretty good price per person $5-6 per serving. I can just heat it up and make steamed veggies to go with it. That has been a big blessing because having to go grocery shopping and trying to cook is too much. I do have a few crock-pot favorites. I don’t order every week.
23. Do you have a joke you would like to share?
I am horrible with jokes. Here’s one of my daughter’s: What time is it when you have to go to the dentist? Tooth-thirty.
If you have any more questions for Missy 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.
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!
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.
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 Ian from Menomonee Falls, WI.
What is your current diagnosis?
What is your biggest worry living with dystonia?
Loss of independence
What is the hardest emotional thing to deal with while living with dystonia?
What is the hardest physical thing to deal with while living with dystonia?
Progressively decreasing motor control with increasing pain
What do you wish people knew about dystonia most?
This disorder is often progressive, very difficult to effectively treat, and there is no cure.
What do you not like to hear when someone is comforting you or caring for you during a dystonic storm or episode?
God does not give us more than we can handle.
What is special about you that you want others to know that has nothing to do with dystonia?
I am a very intelligent and caring person.
What is special about you because of dystonia?
I have learned how to truly live one day at a time and be very patient.
Do you have pain because of dystonia?
Yes, I get body-wide pain due to dystonia.
How do you handle the pain?
I cannot take pain medication outside of a hospital setting. So, I rely on slowing down if necessary, accept the pain as something I must live with, modify my activities, continually re-balance my rest versus activity, pay attention to what triggers pain for me, use microwavable hot rice packs, adjust my body position whether awake or sleeping, gentle stretching, pay attention to what my body tells me and pray.
When your body shows physical symptoms of dystonia, how do you handle the stares and worried looks from loved ones, friends and strangers?
If timing and setting is appropriate I open a discussion to educate them about my dystonia. I openly and honestly communicate to loved ones and friends what I am experiencing at the moment and any assistance I might need. I ignore the stares of strangers unless they approach me. If they approach me I briefly and simply explain what I am experiencing at that moment and educate them about my dystonia if they ask questions.
What kind of treatment have you been given for your diagnosis?
My Movement Disorder Specialist (MDS) has me on Tizanadine and Clonazepam with Acetaminophen as needed. My Physiatrist injects me with Botox every three months. I also visit a Physical Therapist occasionally.
When were you first diagnosed? Have you been diagnosed? How long have you lived with the symptoms. Have your symptoms progressed?
I was first diagnosed in the mid-90’s with focal dystonia of the right hand by a MDS. I have been through an array of testing such as brain imaging, genetic testing, electromyography (EMG) and multiple physical examinations.
What do doctors think is the cause of your dystonia? What do you think is the cause?
My doctors have been unable to determine the cause of my dystonia so it has been classified as idiopathic.
What have you learned about yourself while living with dystonia that has helped you become a better person?
I have learned to be more patient in general, more empathetic to people with disabilities, and how to live life one day at a time enjoying life the best that I can.
What medication or treatment has worked best to treat your symptoms?
The medications I listed above give me the most, but not anywhere near complete, relief. Hot rice packs and gentle stretching have been very useful as needed.
Other than prescribed what seems to tame your dystonia?
Slowing down if necessary, accept the pain as something I must live with, modify my activities, continually re-balance my rest versus activity, pay attention to what triggers my dystonia symptoms, use microwavable hot rice packs, adjust my body position whether awake or sleeping, gentle stretching, pay attention to what my body tells me
How has dystonia affected your life? Your work? Your life at home? Your social life?
The combination of dystonia with multiple other medical conditions caused me to end my roughly 25-year career as a CPA nearly 10 years ago. My last position was firm-wide Assistant Director of Audit & Accounting. Frankly, I grieved over the loss of my career for quite a while. My symptoms do not allow me to work at all anymore. Early on I tried working just a few hours a week at an electronics store but that proved to be too much for me. I cannot sit, stand or walk except for short periods and have to frequently change positions/activities in order to avoid triggering painful spasms. Just before I stopped working my life was filled with long work hours, heavy business travel and family life, with not much socializing except with co-workers and my family. Now my son and daughter are young adults starting their careers. I have a beautiful baby granddaughter thanks to my son and his wife. Unfortunately, they live too far away for me to visit very often. My dystonia now limits me to driving no more than 10 miles so I rely on taking visit trips with local family members who can drive. My daughter lives locally but is extremely busy starting her career. Thank goodness for smart phones and FaceTime! My current face-to-face social time is frankly pretty limited. I am working on that given my dystonia-related limitations. I do belong to an unrelated support group. I am very active on Facebook in the Generalized Dystonia Support Forum, multiple other pages and with many old friends/acquaintances. Facebook is an activity that I can easily come and go from in order to avoid triggering painful spasms. Dystonia prevents me from sitting at the computer except for relatively short periods of time. This prohibits me from maintaining a part-time computer-based job. As the motor skills in my hands have progressively deteriorated I have started using voice recognition technology to type. I live in a one-bedroom apartment. My dystonia makes it very difficult or impossible to do activities like cleaning the apartment or cooking. As a solution I sometimes trade favors with friends, family and neighbors. I cannot afford cleaning or cooking services. I do also want to mention that my dystonia makes walking difficult for activities. I normally walk slowly with a cane but need to use a scooter or wheelchair for distances that I cannot handle with just a cane. I use scooters offered in places like grocery stores. I own a scooter but need assistance loading the pieces into a vehicle. In addition, my scooter has been inoperable for some time, and I cannot afford to get it diagnosed/fixed. I also have a wheelchair but cannot operate it on my own due to my dystonia symptoms. I have to have someone push me around.
Are you part of any support groups? If so, has this or these support groups helped you? If so how?
I attend a support group not related to dystonia and find it helpful in handling life. For dystonia I rely on the Facebook Generalized Dystonia Support Forum and find it very useful. I have noticed too that helping others helps me.
Why did you agree to this interview?
I want to continually increase awareness about dystonia and educate people based upon my experiences.
What is your best or worst story that has to do with dystonia?
I have had many falls, some requiring medical attention. On a lighter note let me share a true story. I ate out at nice restaurant with my extended family. During the meal I loaded my fork with peas. As I raised it to my mouth, a sudden strong hand spasm caused me to flip the forkful of peas over neighboring tables of strangers. We all laughed so hard, especially my kids! The strangers took it well.
Briefly describe what a typical dystonic day is like for you?
Pain and spasms do occur even when I am asleep, sometimes waking me to the point that I have to get up for good or at least move around slowly for a bit and try to get back to sleep. The first 1-2 hours are spent reducing stiffness and high levels of painful spasms from sleeping so still or in odd positions. I walk around slowly, do mental relaxation exercises, and perform mild stretching. Then I plan my day based on how I feel physically once I feel I have relaxed my body to what I call my current normal baseline. My plans are all subject to change based upon how my dystonia symptoms are at a given point in time. On and off throughout the whole day I will check Facebook, emails, texts, etc. I try to reduce my computer and iPhone time in late evening to wind down, clear my head, and get ready to sleep for the night. Any shopping or errands are usually done in the afternoon due to morning medication side effects. My support group meets on various evenings.
Please share one really good joke.
When my son asked how old I was, I teasingly replied, “I’m not sure…” “Look in your underwear Dad,” he advised, “mine says I’m 4 to 6.”
Ian would also like to share the websites below with you to help continue promote more awareness about Dystonia:
If you have any more questions for Ian 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.
I am grateful that on most days I am for the most part functional. I am grateful that my dystonia has not affected my job or my life in such a profound way as it has affected some of my fellow dystonians. I can count on 4 hands the times I’ve struggled to breathe because of it, on one hand the times I’ve struggled to open my mouth and speak because of it, and on 2 fingers the times I’ve been put in a wheel chair because of it. Yeah, I know it all sounds scary having to go through any of that even once. Trust me it has all been very scary for me to have to go through, but I can still take care of my kids, work, cook meals, practice my martial arts, go to school and so on. Yes, dystonia has slowed me down a bit, during bad dystonic storms a lot, but I still manage to get up and going the next day.
Sure, I have to take longer breaks, be more careful about my workouts (no more than an hour of intense workout)), rest more on the weekends, get a good amount of sleep and I have to continue to eat better. I have to be diligent about it. That is not always easy either.
Despite my efforts the dystonia never goes away. Though I may not always have spasms that debilitate me I can almost always feel a “weird numbness or weakness to my left limbs”. The superiority of my right side over my left, especially when I lift weights or furniture or run or do yoga and so on, is incredible too. My left side is, what feels like my weak side. I know my left side is there and its mine, but I have to work extra hard to train my brain to control it, though I am not exactly sure what is causing it to malfunction.
Ugh, I went on a tangent again. My point is, in my opinion, my level of dystonia is mediocre in comparison to those who have had their lives completely altered by dystonia. They cannot work, they can barely walk. Some of them can barely eat or speak. Just go to YouTube and type in dystonia. There are hundreds of video of babies, kids, young adults and older adults giving all of us glimpses of what it is like to have dystonia. There are more than a handful of Facebook groups, meetup groups, twitter groups and a lot of other organizations all over the world talking about their symptoms and how little help there is to treating it. So, my question is WTF is there such little awareness about this disorder?
According to American Association of Neurological Surgeons, “As many as 250,000 people in the United States have dystonia, making it the third most common movement disorder behind essential tremor and Parkinson’s disease. It is a condition that knows no age, ethnic, or racial boundaries – it can affect young children to older adults of all races and ethnicities”. This isn’t a new disorder either. There are people who have been living with dystonia for over 3 decades. It angers me that today, with all the technology we have I can go to a movement disorder specialist and all he wants to do is push another pill on me and tell me I need to keep seeing my therapist. People in worse condition than me are also told to take a pill and see a therapist. Who do we need to see to prove that this is real? We are not making this up. Who would want to live like this? Not me.
I read dystonia is progressive…
I want to become an Occupational Therapist, (I start the OTA program the week after next) and not worry I will have to quit months after I become one. I want to earn my black belt in martial arts. I want to walk not wheel down the aisle with my future husband. I want to dance with my children at their wedding. I want to hold their babies without fear of dropping my precious grand-babies. I want to wake up tomorrow without worrying that by the end of the day, if it’s a bad day I may not breathe for a few seconds over and over again until I panic that the next time it happens I wont be able to breathe at all because my muscles wont unlock no matter how hard my boyfriend tries to relax my muscles or if the hospital will even know what to do with me, because many doctors still don’t know what this is. Are we suppose to put our lives on hold until they figure it out, until they find a cure? I don’t think so.
This lack of awareness is going to change. In the following days I will be posting Question and Answer interviews of some of my fellow dystonians generous and brave enough to post a little bit more about what it is like to have and live with dystonia.