If your child took antibiotics for an ear infection and it cleared, would you think they had made up that their ear hurt days earlier? If a friend began taking new medication for migraines, would you question that their migraines were never an issue in the first place? My guess is, no. So, why would someone question an individual who once had limited mobility due to spasticity, who began taking L-dopa and can now walk? This may not have happened to me, but it may as well have. It has triggered a frustration deep inside me that I can’t explain.
Since my story went viral last spring I have received many, many inquires about Dopa Responsive Dystonia (DRD). In fact, nearly two dozen began taking L-Dopa and are seeing significant results! Amazing, right? Even though they are progressing on the new medication, they often ask me questions about my experiences such as how they can gain strength and how to overcame the internal thoughts of can I actually do this?
The other day I received an e-mail from one woman explaining that some people, including her doctor, don’t believe that the medication has been helping her as much as it has. Her physician asked her if she wanted to see if she could go with out her l-dopa for awhile “to see what happens.” To say I was floored would be an understatement. I could feel my blood begin to boil, but then she went on tell me more...Her roommate actually hid her new medication for 24 hours, because he thinks she’s making this all up! In the meantime, she was in lots of pain from muscle spasms and became more immobile.
I had to take a couple deep breaths, because I can’t help but wonder who are these jokers? And, I’m sure glad none of my friends acted like this! Like me, this woman went three decades dealing with mobility issues and had to use a cane and mobility scooter. So I don’t know about you, but I highly doubt that last month she decided to quit the charade and start walking independently.
As I write this, I can feel the stress build in my chest for the woman who is going through this. I want to say Go find a new doctor and make new friends! Luckily, she is getting a new roommate! Thank Goodness!
I felt like I had to share this for a couple reasons. One: to encourage people not to judge others for what they are going through. If you think that this is “all in their head” please do your homework to understand the situation better, and keep the thought to yourself because the journey is hard enough without comments from doubters. And two: to tell my friends thank you for being so understanding during all of my medical adventures! You are the BEST!!!
I love meeting new people and it's also really fun when we have that connection of misdiagnosis and discovering a whole new life to do one tiny pill. Meet Kathy Baquie, one of those new friends. She also happens to be my latest guest blogger. Thanks for opening up and sharing your experiences with us!
Where does my story start?? I guess before I was born. Something happened in the development of me before I was born. Hence I was born with Dopa Responsive Dystonia. Except in 1959 no knew what that was. I grew as much as I could being a normal kid. I fell over an awful lot, told I was just clumsy. Went to sleep very early as I was tired out. I didnt do very well in school, my handwriting was terrible as my hand shook and my fine motor skills were not what they should be. As I went into teenage years and because of my family situation I was told all my syntoms were put on for attention because they werent always visible. My mum did try to get some help for me but no knew what was wrong. I made up excuses for why I had trouble walking around. I would make up lies to stay home from school so I could sleep all day. I had some physio treatments but to no avail. At 18 I had had enough of being told that there was nothing wrong with me and it was all in my head. I got a referral from my local doctor and went through a whole lot of tests. I finally got a diagnosis of Familial Spastic Paraparesis. I felt so euphoric!!! At last someone believed me. Still there was those in my close family that didnt believe that there was anything wrong with me and it definitely didnt come from their side of the family. Anyway I went on to do some travelling overseas, kept working in a full time job and eventually got married. I two of the best daughters ever. But by the time I had reach around 30 I was having a great deal of trouble keeping up with life. I arranged meeting with my then Neuro Specialist. His diagnosis and prediction for my future was to sell my beautiful home in the Hills, no more children, no stress and wait to end up with a walking frame by 45 and wheelchair by 50. I cried for a solid 2 hours. I changed to my father's Neuro Specialist, ( I was so pleased my father was now on my side) who put me on some new medication that helped a great deal but not as good as my current medication. I have stayed with this specialist for 26 years. After being with Professor King for about 9 years he suggested I particpate in a medical trial about rare neurological disorders. It was because of this trial that I finally got the correct diagnosis of Dopa Responsive Dystonia, along with the correct medication. Within a week or so all my syntoms had disappeared and the chains I felt had restricted my body for nearly 40 years were gone. I had never felt more alive. Within a few months I had gone from barely being able to walk to walking about 6 – 7 kilometres a day and the best thrill of all was skiing down the slopes of Mt Buller (snow fields in Victoria Australia). I have continued to take what I now call my happy pills on a regular basis. I just been through Menapause which has played up with my DRD. I dont sleep well with menapause which makes it hard to cope with my DRD. I do the best I can. I hope my story helps others.
Melbourne Victoria Australia.
As you are all aware, I share my journey of misdiagnosis to help others. When I went on the Today Show, I knew that others would see my story and think, that's me! I'm pleased that my guest blogger, Tara Richardson, was one of those people! Over the past few weeks, I've had the privilege of hearing about her improvements, some are small and some are just plain awesome!
It’s been a few weeks since I started taking Sinemet (Carbiodopa/Levodopa) to see if I had Dopa Responsive Dystonia a rare genetic disorder that mimics Spastic Dipledga.
From everything that I have been told about DRD is that if I had it, then I’d see changes, and if I had Spastic Dipledga then I wouldn’t see any changes.
I’m pleased to say that I have seen changes. Some are minor, and some are big changes. Eventually, I’ll be walking by myself like everyone else. I’m incredibly weak since I’ve been using a wheelchair for 20+ years. I need to build up strength in my legs.
I’m enjoying the process, and it’s honestly scary at the same time. I wake up in fear that I won’t improve any further than I have, or I’ve imagined it and it’s not truly working. (crazy talk, I know)
Imagine living with a profound disability with no cure, and you get worse year by year while all your other friends with “CP” are maintaining what they have gained. You are the only one regressing when in fact, you were far better off than them in the beginning.
I suffer from chronic pain/nerve pain due to the imbalance in my body over the 44 years of my life. I’ve had dozens of surgeries to correct my stiff muscles and straighten my feet and wore braces until I ended up in a wheelchair full-time by age 19.
Now imagine that one day you woke up and your friend sent you a story about a woman who had been mis-diagnosed as having Spastic CP for 33 years when, in reality, she had Dopa Responsive Dystonia, a genetic rare disorder that mimics Spastic Dipledga.
I read her story and thought wow great for her that’s awesome. I had never heard of DRD before. A week later, I saw the video Jean Abbott made before & after her medicine and was shocked. I thought that could be me. I listened to her story and watched the video in a blink of an eye my life changed forever.
I quickly contacted Jean on her Facebook page and while I had been waiting for her to respond, I looked up the diagnoses and thought that I probably didn’t have it based on what I read. My mind quickly changed once I started talking to Jean Abbott, she confirmed all my questions and was kind enough to answer them all.
I couldn’t get to the doctor quick enough. I printed off all the information and gave it to my doctor who read it and she did her own research, and she thought it would be worth a shot.
It’s been two weeks, and my life is changing. My spastic muscles are gone, and I can move my feet & bend my knees independently. My balance has improved 100%; I can hold on to things and move around. I have taken a few steps by myself, and my toes are relaxed.
I’m more aware of my body then ever before. The slight change in balance the bending of my knees the ease of movement is all new to me. I’m no longer dizzy when walking.
I’ve been working hard to build up strength in my legs and my core. It’s taking a while since I’ve been sitting for so many years.
I will keep you posted on my recovery…
To learn more about Tara Richardson and see her amazing artistic ability, please check out her website at http://www.taraleerichardson.com
Recently I was asked to participate in the Jump For Dystonia campaign by sky diving! For those of you who know me well, you know that I wouldn't have to think long about that one...NO! I am about as chicken as they come (I was proud of myself for going on a roller coaster and screamed, "I'm going to die" three times in less than two minutes). Yes, I'm all about trying new things, but I also know my strengths, weaknesses, fears, hopes and dreams. And jumping out of a plane isn't something I see myself doing in the near future or ever, for that matter. However, I knew that there had to be something out of my comfort zone that I I could do to promote awareness for Dystonia. My decision was to jump into the lake (I can't swim) all while promoting awareness for the Dystonia Community and hopefully physicians who have never heard of Dopa Responsive Dystonia (DRD).
I share many links right here on my website under the "Resource" tab about Dopa Responsive Dystonia, but I think you should know that I never thought I'd become an advocate, simply because I had never heard of it!!! My entire childhood, I thought I had Spastic Diplegia, CP. After seeing dozens of doctors over the course of three decades, I still had never heard or read about Dystonia. It wasn't until that crazy "Good Friday" in April of 2010 that a neurologist told me, "I think you have Dopa Responsive Dystonia." In a matter of 48 hours, I went from being pushed in a wheelchair to standing independently!
To say I am grateful for my new diagnosis and treatment, would be an understatement and not a day goes by where I don't give thanks to God for all that He has given me. Many people ask me, "Aren't you angry that you went so long misdiagnosed?" Honestly, I don't hold any resentment or anger about my medical situation. I feel so blessed for my new found mobility and know that there are others out there misdiagnosed just like me! That is why I do everything I can to educate others about Dystonia, particularly DRD.
Click the image to watch my jump! And then take a photo of your jump (doesn't have to be into a lake) and share it with me here or on my Facebook page. Lets create awareness together!
Has it really been a week since my last blog entry??? How can that be!! I feel like the days are flying by and I'm not getting as much done as I would like. I've been busy working on my speaking, working on my memoir, updating my website and answering e-mails from people who have seen my story over the past few weeks (my favorite!).
Yes, I love that people are reaching out to to inform me that they find my journey both inspiring and hopeful. Better yet, I've had eight people tell me that they had a successful trial of L-dopa and are seeing results. Yes, I said EIGHT!!!!!! That's eight people who feel stronger than they did one month ago. This is why I share my challenges with the world. It really does help people!!! Please continue to share my story with your friends and family, so we can help even more people.
As always, I want to thank you for your support. If it wasn't for all of you who read this, I don't think my story would have gone viral and helped so many dealing with the same issues as me. I truly feel like I have been given an amazing gift and wouldn't change any of it!
It's hard to believe that my little boy is three today. I was so excited to make him a Mickey Mouse cake for a couple of reasons.
First of all John loves Mickey Mouse just as much has he enjoys eating chocolate cake!! But more importantly, I just enjoy making cakes for my kids on their special day. Sure, I may have had a DRD moment (sudden jerk of my hands) and the sprinkles flew every where expect where I wanted them to go, but my little boy doesn't care. He loves how the cake turned out and keeps asking, "Is it time for cake yet?"
I was never able to make my daughters cute cakes when they were his age. I would buy a princes cake of some sort from the local bakery and have to call it good. Sure, they were thrilled to have a super cute dessert, but I love it that John will grow up having a homemade birthday cake year after year.
Sure, this mouse may have some sprinkles in the wrong places, but back in the day I could barely frost a cake. And the thought of piping homemade butter cream, never even crossed my mind. Plus, the way I see it, if John doesn't care about the mistakes his mommy made, then neither will I!
Happy Birthday, John!!
I always had really big dreams as a little girl. The thought of being on TV thrilled me. Someone needs to pinch me, because I'm pretty sure that I achieved one of those dreams today! How can it be that my face along with my words were on The Today Show? I was given a platform to advocate about Dopa Responsive Dystonia to millions of people. What an incredible gift that fuels my fire to work even harder to achieve my other dream...to write and publish my life story.
Since my correct diagnosis, I have been writing memoirs about growing up with Spastic Diplegia, a form of Cerebral Palsy. I would love, love, love to see it in print. I want to inspire those who are dealing with difficult medical conditions, express that there really is someone out there for everyone, and to remind everyone to appreciate the little things in life. Until then, I look forward to sharing my blog with all of you!
Thanks for all the support!!
Here's the link to the Today Show!! http://www.today.com/health/woman-misdiagnosed-30-years-gets-relief-simple-pill-t19806
The past few weeks have been unbelievably busy for me. As you are probably aware, I write this blog for many reasons, but one is to advocate for the Dystonia community. I have been sharing my journey via this blog for nearly five years. In the beginning I thought, I hope I reach 50 hits at some point! Little did I know that I would get nearly 4,000 hits in ONE DAY, which would then lead to an interview on The Today Show!!!! Many of you have asked, How did this happen?
A couple months ago, The Mighty shared a couple of my blog posts to their website. To my surprise, they asked if they could write a feature story about my journey for their website http://themighty.com/tag/jean-abbott/. Of course, I said yes, knowing that they work closely with bloggers to bring awareness for many disabilities out there. The day after that posted, I received an e-mail from an editor from The UK Daily Mail asking the same thing. A few days later, their story posted and my phone began ringing off the hook. A week later, The Today Show was interviewing my family!
I know all of this is very exciting, but it has also been extremely stressful. My Dopa Responsive Dystonia requires me to get plenty of sleep, exercise and keep my stress levels low in order to keep my symptoms at bay. This has been a challenge these past couple weeks. I've had to rest more, stretch more and remind myself to ask others for help in order to keep my stress levels lower. Even with the extra effort my balance has been off, I've noticed more tremors in my hands, cramping in my muscles, my walk hasn't been as smooth and I drop more items than usual. With all that said, I am still very grateful for this wonderful opportunity and I could not do it without the support from my amazing husband, Steve. In fact, I don't think I could have done this without him. Scratch that...I KNOW that I couldn't have done this without him!
I must give a heartfelt thank you to The Mighty and the UK Daily Mail for finding interest in my story, so I can have the privilege of helping others. I am incredibly blessed knowing that by sharing my journey, many people will learn more about Dopa Responsive Dystonia and potentially speak to their physician about their own diagnosis.
Side note: It looks like our story should air Thursday May 7th on the Today Show. I will be sure to post a link to the segment after NBC links it to their website. Thanks so much!!
Stress is difficult on everyone, but when I am dealing with this emotion it affects me in a whole different way. These past couple of weeks, I've experienced an increase of muscle cramps, tremors, balance issues, etc. I'm not sharing this as a way to complain or vent, but rather give you a look into the other aspect of me dealing with Dopa Responsive Dystonia.
As other people with Dystonia explain, we deal with flare ups form time to time. Mine are always dependent on how much sleep I'm getting, my stress levels, hormones as well as if I'm sick with a cold or other virus/infection. I work really hard to keep these annoyances at bay. For example, I do some time of exercise every day in order to keep my muscles strong. I try really hard to get at least 8 hours of sleep at night (not easy with three kids) and take a nap in the afternoon. This is my life. Some days are better than others. I'm just glad that these days are so much better than the "old days."
Do you ever think about who you may have been in a past life? This is a question that I ponder every night before I fall asleep. And unlike many people, I know the answer to this question.
In my previous life I was a positive, optimistic, happy-go-lucky girl who just happened to be trapped in her own body due to cerebral palsy. That child wasn’t able to dribble a ball down the basketball court, run around the school play ground, hold a pencil with ease to complete daily homework or even use the restroom without the challenge of pulling her pants up and down.
When that girl grew into adulthood, the idea of marrying and having a family of her own didn’t seem possible, because she wondered who could possibly love someone who has so many physical challenges? Luckily, that girl was wrong and she married a wonderful man who was able to look past all of that and fall in love with the women she was on the inside. She would later be blessed with three children and their family would be complete.
It’s very hard for me to believe that the woman I just explained to you was indeed me. That girl had struggles and challenges every singe day of her life, yet here I am now capable of so much more. Every day I do so many things that weren’t possible such as: walking my daughter to the bus stop, cooking dinner, vacuuming, driving the kids to all their after school activities and so much more!
It amazes me that I’ve had this new life for five years now!!! I work so hard to remember the person I was before that doctors appointment on Good Friday 2010. I make sure to give thanks to the Lord for my new diagnosis of Dopa Responsive Dystonia (DRD) every single day. I also make a conscious effort to appreciate everything that I’m able to do and promise God that I will NEVER take any of it for granted, even on those ever so busy days where the stress begins to rise in my chest.
When I go to bed at night and think about who I was in my past life, I smile because I’m proud of who she was and pleased that she is making the most out of her current life…never taking anything for granted.
A Special thank you to The Mighty for publishing this post (and other inspiring stories) on their website: http://themighty.com/2015/04/why-i-work-hard-to-remember-the-struggles-of-my-misdiagnosis/