Skip to main content

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! 

Comments

Post a Comment

Popular posts from this blog

When Pineapple socks aren’t enough

I wake up in the morning, get my kids ready for school, make my husband and I a cup of coffee and take three small pills. When you look at them you’d never imagine what they could do to your body but right from the beginning I was willing to do it. No matter what it took, I would do it. Little did I know, these pills would just be another part of the sadness. I continue on my day, limiting caffeine, watching what I eat and gaining a pound a minute. Before bed, Jim injects more medication into my buttocks. These medications are supposed to be getting my body ready to have a baby but for some reason this small thing that I want so badly is so hard to achieve. Since the day I met Jim, we’ve wanted a baby. We’ve picked out names, first outfits, and ways we want to tell our parents the news. It’s been 4 years since we agreed we wanted to start trying and we still don’t have it. Just before Covid hit, we decided to see a fertility specialist to help us achieve pregnancy. We tracked my cyc
Post a Comment
Read more

update on Dystonia and Family

I have been doing as well as could be expected.  I am back in Florida so it's nice to be with Ryan.  Although I am still upset about the whole thing, I am trying hard to smile and not let it show.  The spasms have returned and have gotten worse since the DBS was removed.  When I suck on a piece of candy or ice, my throat tightens up.  It's very scary but Im hoping it won't get any worse.  My neck also twitches sometimes and my foot spasms have come back.  My hand is curled in but if I think about it, I can straighten my wrist (not my fingers).  The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open.  I had never been so excited as I was that day.  I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey.  Hailey helped me get through the surgery and I was getting
13 comments
Read more

Pregnant With Dystonia

Well, hello there and welcome to my blog. These last couple months have been stressful, exciting, painful, happy and scary. I'm working on keeping these feelings positive! A couple of years ago I was diagnosed with Dystonia. My left hand has curled into a fist and I can no longer use my fingers. My wrist is permanantly stuck in a spasm and I now wear a brace 24/7. I get daily spasms in my feet and sometimes its hard to walk because I don't know when it is going to happen. I have muscle spasms in my back quite often and occassionally in my neck and jaw. On top of the dystonia, I have multi-directional instability in both of my shoulders, causing them to dislocate very frequently. In February, 2010 I took a home pregnancy test and it was positive! It was the greatest thing that has ever happened to me. Although my boyfriend and I were a little nervous, we smiled and started to plan our life together with our baby that was on the way. Since then, I haven't been able
8 comments
Read more