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!!!
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​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. 


Thanks,
Kathy Baquie 
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

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!  

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