Brilynn Rakes: Nystagmus Inspiration

On this season’s Dancing with the Stars, a young lady named Brilynn Rakes, was featured for the AT&T Spotlight Performance with Derek Hough.

This segment of the show aims to showcase inspiring stories about amazing people who have had their lives changed by dance.

Brilynn Rakes’ Story:

Incredible!

I connected tremendously to Brilynn’s story because of her nystagmus condition. Although, our types of nsytagmus are different (horizontal vs. vertical) and she was born with her condition while I acquired mine because of my cavernous malformation found in my brain stem at age 24. She is such an inspiration to me.

What a skilled and beautiful dancer. I can only imagine what it must be like to have mastered dance with those all-too-familiar “dancing eyes” — wishing you all the best, Brilynn. Thank you for the inspiration.

Never let anything stop you from following your dreams!

Learning to Live with Nystagmus

This last Saturday marked 9 months since my brain stem surgery. I’m always grateful when I think back to where I was back at the beginning of the year and how far I’ve come in such a relatively short amount of time. There are still a few issues I’m dealing with, though, and the main one is my nystagmus condition.

Nystagmus is defined as the involuntarily movement of one’s eyes. People can either be born with this condition or acquire it later in life. I acquired it as a result of my cavernous malformation and brain stem surgery. It’s hard for me to actually pinpoint exactly when it started happening, whether or not it was before or after the surgery. I had never even heard of the condition until I was later diagnosed so it took us a while to actually figure it out. While I was in the hospital, the shaking was so bad and severe that I would just say “I’m nauseous and dizzy. The room won’t stop shaking.”

These days my nystagmus is no where near as bad as it was in the hospital. Some days are better than others. Nystagmus is highly affected by one’s stress level and the amount of sleep (good rest) that they get. To learn more about the condition itself, I recommend starting with the nystagmus Wikipedia page. Majority of nystagmus eye movement is horizontal, shaking from left to right. My nystagmus is actually vertical, my eyes shake up and down. Every doctor I’ve been to says how unique it is and that they’ve never seen my kind before.

I’ve been inspired to create this blog post to add to the limited information that’s out there about this condition. I’ve researched and researched to learn more about it but it’s hard to connect with other people who are actually living with the condition. I’ve compiled two lists of tips for people with nystagmus. I hope someone out there finds them beneficial.

Tips for Nystagmus Sufferers

• Keep your stress level as minimal as possible.
• Get plenty of rest.
• Wear contacts over glasses. The friction helps to reduce movement.
• Give your eyes a rest. Close your eyes and just take a moment to breathe. This helps to minimize your stress and give your eyes a break throughout the day.
• Work on your hand/eye coordination as much as possible. Ask your doctor or therapist to go over exercises with you that can help.
• Be VERY CAREFUL when around stairs. Always do your best to be aware of your surroundings including any curbs, steps, or holes in the road – because our eyes tend to shake all the time, it’s hard for us to recognize these differences below our eye level.

Nystagmus Driving Tips

• Don’t drive at night, ESPECIALLY, avoid highways.
• Drive with caution at all times.
• Avoid high traffic times & areas, especially, parking lots where people can jump out at you unexpectedly.
• Avoid highways.
• Nystagmus is a handicap. See your Doctor & ask for a parking pass if you think it will be helpful for you. If you are a student, I highly advise this – busy campuses and parking lots are extra dangerous to be driving in if you are not cautious.
• Do not drive when you are extremely stressed or tired.
• Try to focus on the car’s bumper in front of you to minimize shaking.

Don’t let your nystagmus discourage you. Living with nystagmus is a very doable thing. At times, it can be very frustrating. Trust me – I know, but it’s a condition that I’m grateful to have because I’m still very much alive and well. It’s something you can learn to live with. On a lighter note, when my husband catches my eyes shaking – I always tell him that it’s just proof of how much he rocks my world. 😉
If you’re living with nystagmus and looking for more support, check out this Nystagmus Support Group. Also feel free to follow the Nystagmus Network group on Facebook. The Nystagmus Network is a charity stationed in the UK and America for the advancement of nystagmus support, research, and education.

4 Month Follow Up & Wedding Progress!

Life has been so busy as of late! Truly sorry for the lack of posts lately, my friends. Do remember you can keep up with me on a more regular basis on Twitter by following me at @xtineds.

Here I am this morning, obviously amped to visit my Dr.!

Today, I visited with my hero nuero-surgeon, Dr. Day, for my four month follow up visit. He was very happy with the continuation of my recovery process. He says the continuation of my nystagmus (eyes shaking up & down) is normal and that hopefully, with more time, it will get better and better and finally resolve on it’s own. I hope this is the case but I know after visiting my Optamologist that there are many people in the world who have this condition that have learned to live with it and be fully functioning members of society. I shared with my Dr. how relieved I was to be able to at least drive again locally (short distances, not in high traffic times, and no high ways yet). Again, I consider this the biggest blessing because it was absolutely horrible not being able to drive myself anywhere!

At the appointment, we also got to see the before and after MRI pictures of my brain. I wish I had copies of these to share with you guys. It’s incredible in the before picture to see exactly where the malformation was in my brain stem. Then in the after photo you see that it’s no longer there and a good chunk of my skull is missing. By the way, whatever happened to my sacrificed skull piece? How cool would it be to be able to say, “Hey guys, look! This is a piece of my skull!” Haha! How’s that for a conversation starter sitting on your coffee table! Just kidding, but in all honesty, I wonder.

Dr. Day gave me the OK to get back to all my normal activities. This is great because I’m excited to get in some good work outs before the wedding. A month and a half left to go! 41 days to be exact.

We are making great strides in what there is left to do and organize before the wedding. Here’s a quick recap of everything we got done this past weekend:

• Wedding cake for the reception party designed, tasted, & ordered. YUM!
• Wedding ceremony guest list finalized. Paper work complete & ready to send off this week.
• Beautiful bridal hair and make up trial run by the awesome Ali Lanning. This was such a blast. She’s so fun, yet professional & completely awesome. I enjoyed every minute of it. I find it incredible that even though I had half my hair shaved off underneath (which is now growing back & at a very awkward phase) it still didn’t inhibit Ali from giving me an awesome hair style that I absolutely loved and made me feel so beautiful. Ali is also a huge life saver for me because she has agreed to come to me in Galveston verrry early in the morning to get me all beautified and ready to marry my best friend. Let me tell you, it was a huge headache to find a make up and hair stylist that would be able to accommodate me so early on a Sunday morning in Galveston without charging me an arm and a leg. Ali came to my absolute rescue! I am so grateful!
• & despite the bad weather, we shot our engagement photos with Corey & Michelle Bowman of Corey’s Images, a wonderful husband & wife photography team. Had such a blast working with these two. They were incredibly generous and reached out to me via my blog to provide us with their photo services, which is such a blessing. I consider them my wedding photography angels! Can’t wait to see how great these photos turn out. After the shoot, we drove over to do a quick site visit at our venue,  AvantGarden. Michelle & Corey loved the uniqueness of the place and shared their excitement about shooting the reception party for us. I love their passion, enthusiasm, & over all amazing energy. It was so cool to see how well they work together as a team. I’m really glad we chose to go with these guys for our photography. It was meant to be!

Last week, we also received our gorgeous bridal florals and decorations, which were donated by EightTreeStreet. I was ecstatic to open these boxes. Bouquets, boutonnieres, and wedding wreaths. Maribel is amazingly talented and really great at what she does. She personally worked with me to design the look, feel, and style of exactly what I wanted at my wedding. I’m expecting one more box of goodies from her before the wedding. I can’t wait to see what else she has in store for us but I’m positive it’ll be absolutely gorgeous.

Wedding progress is coming along nicely, as you can see, with the help and gracious generosity of others. Definitely not all that much left to do. My next follow up with my neuro-surgeon is scheduled for my 1 year anniversary of brain stem surgery and I’ll be required to have another MRI done. Not looking forward to having the MRI done, but it’ll be awesome to see where I’ll be one year post-op.

Thank you from the bottom of my heart to Ali, Maribel, Michelle & Corey for being such blessings in our lives and helping make my wedding dreams come true. I can’t thank you enough for your donations, time, & talents. Bless you guys!

3 Months Since Brain Stem Surgery

May 10th marked a whole three months since my brain stem surgery. It’s so crazy to think about the position I was in back in February and where I am now. Incredibly, recovery has been going very well.

I am still dealing with the nystagmus condition of my eyes, but I’m trying to work with it. I’m slowly trying to learn how to drive again but of course, I’m very cautious about it. There’s no way I want to risk my life, or the lives of others, due to wanting to rush to get back behind the wheel again. Although, it’s incredibly frustrating not having the independence. So far, I’ve driven to the Chik Fil A and gas station, both less than a mile away. My fiance says I’ve done a great job on both counts but we are definitely taking it slowly. I see some empty parking lots in my future.

My equilibrium is still off a bit. I need to ask my doctor about ways to improve this. For example, if I’m not in a normal upright position, my eyes begin to shake. It’s also easy for me to tip over or mis-step when I’m walking, like I’m off balance. The good news is I haven’t fallen or fainted or felt nauseous. So again, the progress is great but I still have a ways to go before being 100%.

I was discharged from both physical therapy and speech therapy weeks ago. They helped somewhat to show me certain strategies but majority of my rehabilitation has been done by myself. I just have had this overwhelming inner motivation to get back to my normal self as soon as possible.. getting married in 89 days and counting will do that to you! The very first thing my physical therapist told me when we met was that her main goal was to have me walking down that aisle in August, not being wheeled down, and thanks to God, that will be the case! 🙂

During my last MRI and follow up visit with Dr. Day, he found some spinal fluid in my head which is the weirdest thing to physically feel. The only world I can describe it as is “squishy.” It also trips me out because I have a half circle in the back of my skull which you can physically feel… it’s a trip! I literally have a hole in my head (skull).. lol! I also have screws and a titanium plate. They also performed a laminectomy, meaning they had to remove some of my vertebrae in order to get to the area where they needed to perform the brain stem surgery. I learned all of this way after surgery… it blows my mind thinking about it (and feeling it). Please excuse the choice of words… hehe! But anyways, my Doctor told me this spinal fluid pouch is something that should hopefully subside on it’s own and I feel like it has for the most part.. good news.

Other than those symptoms, I have been feeling great. Getting back to going out, being social, seeing friends. I don’t get as tired as much anymore either. I’m looking forward to our wedding and honeymoon in August, finishing graduate school in the Fall, and diving back into the job search process with Master’s degree in hand! I’m very excited for the future and so happy to be able to enjoy each and every day.

My next follow up visit with my neurosurgeon is scheduled for July. I’m looking forward to hopefully getting the OK to be more physically active. I want so badly to get back into the gym and be able to work out, hopefully, the equilibrium and nystagmus will get even better.

Thanks again for all the continued support!

Spelling & Grammar Mistakes – They Drive Me Crazy

My vision is not back to normal yet. My eyes constantly shake up and down, so it’s very difficult for me to see still. The condition is called nystagmus, which is an involuntary movement of the eyes. I pray each and everyday that this post op symptom goes away quickly. It is so very annoying. So just a head’s up – please excuse any of my spelling or grammar mistakes. 🙂