Six months ago my movement disorder neurologist confirmed I had Dystonia in my right hand and the starts of it in my left. Dystonia is a movement disorder that you can get on it's own or as a symptom of PD. Essentially it is when you have sustained muscle contractions causing twisting & repetitive movements and it like PD is progressive. At that time my levodopa was working well for about 2 hours for fine motor things and 4 for the stiffness and I take it every 5. I was managing the "off" time by not staying still much, the more I move around the more it helps with the stiffness until my next dose and "on" time. He at that time wanted to add a new medication called Pramipexole which he said would help level out some of the peaks and crashes and would also help with the Dystonia. I was devastated, in fact a wrote a blog post about that visit and how I threw myself a week long pitty party & cried most of the drive home before dusting myself off and saying "Nope, I'm not ready for more drugs I'll find another way", and I went to bootcamp for 8 weeks and started acupuncture regularly. And that's just what I did and I thought I had managed quite well with it; telling myself I didn't need anymore drugs yet I'm just too young Screw You Parkinsons cause I got this!
Well it all did work in a sense. I always feel better the harder I work out and the Chinese style acupuncture did incredible things for my hand. It went from pain 24/7 to only hurting when I used it, and is still like that which is incredible! However as the weeks turned to months I started noticing changes in how my body was working. My levodopa was starting to wear off around the 3 hour mark and when it wears off I can instantly feel it in my back. It starts with a stiffness from the lower part moving up to my neck, I start to get the stooped posture I wake up with everyday and then the stiffness gets so bad it causes a considerable amount of pain. I also started to notice mild tremors starting in my left hand (everything has been isolated to the right side so far). And then there was the muscle spasms and twitching that I used to have a lot of prior to starting treatment for Parkinsons. Now I was getting it in my left forearm, a regular twitch that caused my middle finger to pull into the center of my hand with every jump of the muscle in my forearm. Some days it would last a few minutes other times it would annoy me for hours. And then.... the worse came... As I was trying to get practice runs in to run the 5K in the PEI Marathon I noticed the stiffness around my ankles was quite bad and made running difficult. At first it was just frustrating but then pain started in my feet. Mostly in my right but also in the left and it was excruciating. There were days I only stood if I absolutely had to and even my 7 year old was starting to ask why Mommy was limping. However, I had the answer for this! I had Planters Fasciitis, likely the result of years of wearing high heels. Because after all the pain would go away if I put a pair of heels on and it felt like it was in the heel of my foot. I thought to myself 'this sucks but I can treat that, not the end of the world'. I booked some extra acupuncture some weekly massages and physio and it would ease the pain and have me walking without the limp but it never seemed to last more than a couple days.
And then it was time to travel my usual 4 hours each way trip to see my PD Doctor where for the first time, I had a list of things I needed to discuss with him. He asked how I was doing and my initial response was "I think I'm getting along pretty good!" As the conversation unfolded he was not impressed with the decrease in how long my meds work, thought it was great that my hand was improved form a pain standpoint with acupuncture but was still concerned. Then I mentioned the slight left hand tremor on occasion, the twitching and my feet, told him my self diagnosis. His initial response was to agree until he had me take off my shoes and started looking and feeling the fleshy part of my feet and my ankles/calves. I quickly explained to him that it couldn't be Dystonia like my hands because my toes weren't curling but he wasn't responding. He was still pushing on spots asking if it hurt and feeling the muscles. He then explained to me that he was sorry and that my self diagnosis was wishful thinking on my part. That it felt better when in heels because it was stretching out the twisted up muscles (silver lining I can still wear my heels). That I did in fact develop Dystonia in my feet. He went on to explain about my levodopa off periods, the pain, the twitching all means that I need to take the new medication he tried to give me last time. That it would help with the spasms, the pain and level off my crashes. That it was either take more levodopa so I don't go as long in my "off" periods and increase the risk of when I'll get dyskinesia or take this new pill that has no worry of that.
I was NOT happy, in fact it was the first time that in front of him I fought back tears. The other times I remained strong in the appointment and bawled in the car. I explained to him that I've only been on treatment for a year and a half and this just seems to fast to get this much worse and I asked him if it was too soon? He simply said in a gentle voice "It's normal progression for Young Onset." There's that damn word again, progression... I hate that word more than I hate the word Parkinsons. I do everything I'm suppose to do to slow progression, everything the studies say, everything he tells me to do but yet I still get worse. Now I know I have a neurological disease that's degenerative and progressive I'm not an idiot, I know as time goes on I'll get worse. But I can't help but think "why so soon?" It was explained to me that although in my mind I see it as being treated for Parkinsons for a year and a half, that in reality I've had PD much longer than that. It was almost a year before I started treatment for it and 15 months to get officially diagnosed. However even long before that I had PD and those dopamine producing brain cells had been dying off. So I see it as a year and a half and all this progression when really it's likely more like years. I was glad to have company on my drive that day as a distraction, but I admit I spent the majority of the night crying my face off.
So you see, my stubborn side said no way to his new meds last time. I still don't think that's a bad thing, I have always said that you need to be your own health advocate. Knowledge is power and you need to find your own way. And one thing I love and appreciate about my Neuro is that he isn't pushy, he gives me the facts and also gives me time. He understood my unwillingness to take it the last visit but this time was a bit more forceful, yet still not making me feel like I had no choice in the matter. He's empathetic to the emotional struggle as well as the physical. He very much assured me that if I just trust him this time that he feels I'll have significant improvements, that I may even be able to run again and he's confident that I'll be able to workout harder again like I had been a year ago. He said that it will help with my apathy issues and give me some of the motivation I've lost back and that I won't be in as much pain. All those things are good things and as frustrating as it all is I know that I have to trust him and I know that I've gotten worse and I know that I need to do this. And if it alleviates the pain and some of the suffering I'm in now then it'll be worth the month long process of 'dosing up' that I'm in the midst of once again.
Most of all I have to remember that if this gives me improvements it means I'm a better Mom. I don't like it when Samantha notices my negatives changes, it stresses me out and makes my heart hurt. I don't want Izabella wondering why Momma is walking funny or why I won't pick her up as often. Throughout this entire journey I've always said everything I do, I do for my kids. That I will be a present, fun Mom that makes lasting memories with them, not a lump on the couch. So, with that said I admit that my way didn't work for very long and that although I'm stubborn I also know when to admit defeat and trust my doctor. I think it's fine to not take their advice once or maybe twice while you try other things, research your options and whatnot. But if you continue to get worse and ignore your doctor who's an expert on your disease then you are the kind of stubborn that is a negative. So for now I embark on another phase of my journey and I trust his knowledge and look forward to proving him right and seeing improvements.
