For myself there's a balance between traditional and perhaps not such conventional therapies. For instance my horse back riding lessons. It's now been six months since I started taking lessons and I have to say it has had a tremendous impact on both my physical & emotional health. Unlike traditional therapies that I also utilize like Physio & Occupational Therapy, Massage and Acupunture riding is for my benefit now and moving forward, preventative therapy. Where as the other therapies typically serve an immediate need for relief. A need to improve the function in my right hand, or ease the pain that comes in my shoulders & neck which can often be debilitating. Those treatments are necessary for multiple reasons however riding is different. It is helping maintain my balance & leg strength, essential if I'm going to keep wearing those heels! It works on my posture which is important because with PD one tends to stoop. The more lessons I take the more I see improvement in my ability to ride, but more importantly the more strength I maintain in muscle groups that don't get worked with other forms of exercise like running or walking. After these six months I've been able to train my legs to do what it required of them, to keep those muscles strong and although there are still bad days where my abilities are limited when riding it is still an enjoyable experience for me, that's the mental health side. It's fun even on the frustrating days. My last two lessons I've started to attempt to canter. This is an extremely fun step and concept, although it most definitely requires my body to cooperate in different ways than trotting does. My mind knows what my body needs to do, but my body just isn't quite there. I have much work to do on keeping my legs in place, not leaning forward and keeping my posture tall & centered and in the saddle and not on the ground! All of those things can be a struggle for this body of mine. It can be a bit of an intimidating thing when your body doesn't necessarily want to cooperate the way your mind wants it to. However, regardless of that the excitement of moving onto that next step of riding gives me the push to want to keep working at it. I get so much joy out of my weekly ride even on the bad days that I hope I never have to give it up. I may even be liking riding boots as much as my high heels! Ha! Ha!
Then there is the balance between pharmaceuticals and the more natural way. I am not opposed as said before to the pharma way, in fact I cannot imagine my life without Levodopa since being on it these past 5 months. I certainly wish my 'on' periods would last longer, but none the less I would not want to go back to the way I was before. Better to have some 'on' times albeit brief than none at all. So I am grateful for this treatment and for the great movement disorder neurologist & his nurse that handle my care. They are always there for me to ask questions even in between appointments by email and I am very fortunate for that. That being said there are so many other issues that go along with PD such as insomnia & pain and I'm just not willing to take yet another drug for every other ailment. So I really do try and do my research and find alternative treatments to the pharma world for these things. Besides I have tried some of the pharma routes for those things and they do not work. I had been told that by my neurologist that if it's PD pain, or PD related insomnia that muscle relaxers, sleeping pills and other such treatments typically don't work. So in addition to my own research I have a fabulous Naturopathic Doctor (Nara Simmonds). She works with me to focus on the most important issues I need help with and together we attempt to find things either diet related or supplement related that can help. Sometimes they do not work, other times they do. After some failed attempts at natural options such as melatonin for sleep I have been taking Valerian Complex for over 5 weeks now and I am thrilled to say that I have gotten more sleep in the last month than I have in the last two years combined! It's a very exciting thing to wake up knowing you got 5-7 hours sleep when you were essentially living on between 5-10 hours total a week before, if you were lucky. Sadly the health coverage world does not cover these things, which sucks because they can be expensive especially when you have a daily cocktail of that, B complex, Magnesium, Vitamin D, C and so on. The monthly tab can certainly add up. And there have been many suggested items that I've had to decline taking simply for financial reasons. However it is one heck of a joyful thing to have finally found something to help me get some much needed sleep! I had another appointment with her today and she's never one to give up, she had an entire list of plan C, D and so on incase this past one didn't work and I swear she was just as elated as I was when I told her I've been sleeping! She armed me with a list of some other things that can help increase dopamine production and 'on' periods as well as some other things to prevent neuron death (death of the cells that produce dopamine) and has researched it all to make sure it's all safe to take with my Levodopa. Of course I won't be able to afford to take everything on the list, but I'm looking forward to trying her top pick on the list next.
So for myself, there is much to balance. Natural and pharma, conventional and non traditional therapies and treatments. There's also the balance of attitudes. Just like anyone else I have my days, it would be unrealistic not to. Although I refuse to let PD define me, it has changed my life forever. With it still comes fear of what is to come, but also comes determination. I am determined to find the balance in therapies and treatments to maintain my current quality of life for as long as possible. To continue to explore forms of exercise that work for my body's limitations but still pushes them. To do everything I possibly can to try and slow progression. There is much that is out of my control and those are the things that cause fear and sadness and a sense of loss. All emotions that come to me in waves. However my attitude on how to accept it is up to me. Yes I have the poor me days, who doesn't? However when I find myself in that slump for more than a day or two I really try to kick my own self in the ass and give my head a shake. I am also fortunate enough to have a handful of people who care about me enough to lift me up on those days and I am very grateful for them. Having a fighting attitude is what will continue to drive me to exploring these new treatments and therapies and find the ones that work for me. PD looks differently for everyone who has it, particularly young onset patients. Therefore there is no blanket way to deal with it suitable for everyone. But I think if you want to fight it, if you want to maintain the best quality of life you can for as long as possible you need to step outside of the box and look at the giant picture of options. This is why my 'care team' consists of many professionals who are experts in various fields, they all play a role in helping me fight!
I fight not only for myself, but for my beautiful girls...for my little family of four!
