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Update on dystonia

 The first thing I think of in the morning as I’m getting out of bed is if my dystonia is going to act up or not that day. Especially around the two month mark after I receive Botox. Every three months I get botox injections in my arm and leg and sometimes in my neck. I’ve been trying botox for 12 years with no luck but for some reason it works for me now. The problem is my insurance company will only cover it every 12 weeks and it usually stops working after 8, so I go about a month with symptoms before I can get it again. 


My hand is starting to close again and giving me a lot of problems. I can’t use it for most things even when it’s open and it gets very frustrating. I drop something almost every day because of lack of strength and popping in my fingers. It’s deformed looking and hurts all day every day. I mostly have gotten used to just doing everything with my right hand but some days it just gets to me and I want it to be normal. I got a second opinion (more like 10th) with a different hand surgeon to see if there’s anything more I could do to make it better than it is right now. I have three options. The first, leave it how it is and hope that it just gets better on its own over the years. The second, have my fingers fused, which would mean I’d never be able to straighten them or make a fist again, they would just be in a fixed position. Or the last option is to have a surgery called a Zancolli lasso. This procedure would likely help the function of my hand but, as always, they are unsure how much it would help and because this would be my fifth hand surgery there is a lot of scar tissue in there which would make it difficult to perfect.

I understand my hand will never be normal. I understand that dystonia destroyed it and it will always be ugly. But I don’t want to give up yet. I don’t want to accept the way it is because I can’t do everyday things. I can’t pick up a drink, I can’t braid Haileys hair, I can’t play softball or make things with my cricut. I can’t carry things or hold Codys hand. I just want to be able to use it.

So, I don’t know what the answer is or what I’ll do next. I have an appointment in October with my neurologist for botox so I’ll talk to her to see what she thinks.  If I do the surgery I will need to do it right after I get a botox injection so my dystonia doesn’t flare up and ruin the surgery. 


My foot is starting to turn in again too. It seems like my DBS may never work as well as it did before. It’s so depressing. I was hoping this would be the month I wouldn’t start getting symptoms again and wouldn’t need to still get Botox but over the last week it has started again. Hopefully over time we can get my settings right and see some improvement.


I have been trying to still walk but haven’t been doing as much as I was when I was doing my March for dystonia fundraiser. It was tough over the summer because the kids were home and we were busy having fun! So, I’ve gained back some of the weight I lost but I’m starting back up again and hoping to get back to being fit and healthy! It definitely made me feel better. I just need some motivation! 


I’ve been taking some nutrition classes and will soon be registered to help others live a healthy lifestyle! I’m learning so much and can’t wait to get started on helping people! 


Well, off I go for a little jog. Thank you all for reading. I appreciate all the support. September is dystonia awareness month so please share my story! 

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