Thursday, November 23, 2017

Jasmine vs. Sweet Potato Casserole

The holidays are supposed to be a joyful time of the year. For those of us with Gastroparesis, or paralysis of the stomach, it can be a difficult time as families gather to eat meals. When you cant physically eat, the holidays can feel really isolating. My GP diagnosis actually happened on Thanksgiving day, 2015. Here's the story:

To say that 2015 was a mess in the life of Jasmine is the understatement of the decade.

On the Thanksgiving of 2015, my life would change forever. It was a day that I both laughed and cried harder than I had ever before, and a day that I would learn a valuable life lesson from a sweet potato casserole.

Let’s back it up. At the end of 2014, my health rapidly crashed, and the beginning of 2015 was the beginning of three difficult years to follow. The first half of 2015 was a massive health decline leading to my DBS in June, and then I went back to my senior year of college. 

At one point, in the early years of college, my gut operated pretty well, I ate normally. I have always been lanky and tall, at 5'8 I was a healthy 130 lbs, wearing a woman's 0-2. I remember even seeing some of the girls who were even thinner than I was, and being so frustrated by the fact that due to my disease I couldn't actually go to the gym and work out like the other girls. Even though I knew that my weight and lifestyle were healthy, I still found myself wanting to be like a photo-shopped model on the cover of a magazine. Silly isn't it, looking back? Just a few years later i would be praying to gain weight. I wish I had been better than at respecting and loving my body for /what it was.

That is why when I lost my appetite at 18 I didn't really complain. My docs all just thought it was a side effect of my meds. I would find myself laying in bed at night realizing that I had only had a smoothie that entire day. 
I would set an alarm to remind myself to eat during the day because I had no hunger pangs, and being a work-a-holic, if I didn't set the alarms I would forget that I had to eat to survive. 

I remember the first time I had a significant flare of Gastroparesis. Chronic illness 'firsts' have a way of sticking with you and haunting you for the rest of your life.
During the Christmas season of 2014, Marisa, one of my best friends from high school, came with my family to our yearly tradition of going to The Grove, a mall here in Los Angeles that has a silly yet super fun yearly 'snow fall' during December. It is basically soap bubbles that fall from machines on top of the buildings every hour in the evenings. No, it does not feel like snow, but it looks like snow, and so its just fun and silly for a bunch of Southern Californian's who only get to dream of a "white Christmas" to get to take a few fun photos. We started doing it towards the end of my teen years and we stuck with it, it was a fun way to have time together as a family as I went off to college when I came back for the holidays.

My love of food is one of the most ironic and cruel things about having Gastroparesis.
That is just one of the things that I look back on and think to myself that maybe my life is just a sitcom someone is getting a real kick out of. Maybe the writers ran out of good ideas so they are just doing crazy things because they can’t kill me off. The crazy adventures of the tragically flawed yet lovable dying girl are far more interesting than a dead one.

Marisa and I have been close friends since we were 14 years old and met as freshman. We have grown and changed so much since we met back in ’08, but our friendship has grown with us instead of grown apart. I am lucky to have a few amazing high school friends who to this day are still my sisters. Below are a few pictures of my high school best friends Marisa and Danielle and I then and now, its pretty amazing how much we have grown, and yet every time we see each other its like no time has passed. 

I was a SUPER picky eater as a kid. I mean crazy picky eater. A lot of it had to do with textures, which is still something I struggle with, but my love for flavor overruled it. For example, lettuce’s texture makes me throw up, completely unrelated to my stomach issues. I also get some real serious anxiety when food which I cannot associate together in my mind touches, that is all I can think about is the fact that the foods are touching, that their flavors are combining in ways that I dislike, and I just cant eat it. I will eat around it, but I will give it a pretty wide margin. My family has always thought that was hilarious. We tend to laugh at each other quite a bit, and my picky eating and food touching stress was a family joke. 
Now as far as my picky-ness goes, I am pretty sure that I survived toddlerhood on a diet of rice, mac-and-cheese, and tofu with soy sauce. 

When I was 14, coming home from yet another failed doctors appointment. Those appointments were always mentally draining, and my dad and I were hungry. A few minutes from home, I saw a taco place I thought to myself, screw it. Life is too short not to try new things. I am not sure what possessed me to do that, but I decided to for the first time in my life that maybe there was more to food than my stress over the way it looked or felt.

I grew up on the east side, where we boast some of the best Mexican food in the state. I would always eat tacos as separate entities, eat the tortilla and the meat separate from each other, with a little lime, because the onions were too crunchy, and the salsa was too chunky (I know, I know. I can’t believe me either. Silly kid Jasmine). But I decided to get out of my head and eat it all together. And it was amazing.

It sounds stupid, but that taco place changed my life. Every time I drive down Beverly Blvd and I see Karina’s Mexican Food, I smile a little and say thank you. 

At that point I got super into trying new food. I wanted to try everything and anything. And our shared love of trying new kinds of interesting food very much catalyzed my friendship with Marisa. The memories we made together running around LA on our hunt for interesting meals will last a lifetime.


“Food Adventures” became our thing. Even our moms were in on the trips that lasted through our college years. Our very first one was at a Peruvian resturaunt called Aji Limon, a favorite which we have returned to many a time. Marisa and I also facebook documented these adventures, and here are a few pics from our first one. Its pretty clear from these photos as to why we were hooked.

We were determined to try everything we possibly could, eating our way through the various cultural restaurants in Los Angeles, we learned about our neighbors through their cuisine, often looking for places to eat operated by local families instead of corporations and chain restaurants. As often as possible we would ask the people who worked there what they would suggest, what their favorite dishes. We also both got to learn a little bit more about ourselves through this process, Marisa's mom is Mexican, and my mom is Korean, and together we shared many meals with our moms that they would relate back to growing up. All things considered, our food adventures were amazing. 

So that was a crazy detour from my point. I am really good at going off on tangents. Back to The Grove, Winter of 2014.

There is this Italian restaurant, Andre’s, right near The Grove, that I was OBSESSED with. It just sort of stole my heart the first time I went in there. One thing about me is I despise bougy places. I will take a ‘hole in the wall’ over prim and proper any day. Andre’s is so down to earth, its family owned, the food is AMAZING, and its really affordable. Did I mention the food is amazing?

There is always a long line, but it goes fast. It is cafeteria style, as you go down the line, you take trays, and they serve you and then you pay at the register.

I had been hyping this place up to Marisa for like two years, and when my family was going to the grove that December when I was home on break I just had to take Marisa with us on this cheesy tradition, so she could experience the magic that is Andre’s.

After it took us like an hour and a half to go the ten blocks from the freeway to The Grove down 3rd street the WORST traffic ever, we finally got there. And I was feeling really off.
I was dystonic, which wasn’t abnormal at that time, just more pronounced than typically, and my stomach felt weird. One bite of the dense pasta and I felt so extremely full that I could not eat anything else, not even a gelato.

I shook it off, thinking it was just a stomach bug, but later on that feeling would come back over and over again until it was the only feeling I had in my stomach. At least Marisa got to try Andre’s! It lived up to the hype 😊


Fast forward to 2015. By that point, I had steadily been losing weight. It wasn’t intentional, I simply could not eat a full meal without feeling stuffed. Like i had just eaten, well, thanksgiving dinner. 
And so I ate lots of little meals, drank ensure, did what I could to try and get enough calories to live. 
I went from 130 lbs to 105 lbs by the time I had the first brain surgery. 

I am no fool, I knew I had gastroparesis. It’s a known complication of PD. What I didn't realize was how dire the situation was getting or how serious the implications of this complication was. It was such a slow process that i didn't realize I was dying until I was skeletal, when laying down bruised my rib cage because I had no cushion, when I learned hip bones are the perfect height to be attacked by doorknobs. Being extremely thin is not fun, its painful. Its like looking in the mirror one day and wondering, what happened to me?

Even though I knew DBS wasn't going to fix my stomach, I convinced myself that it would, that this problem was not going to be something that I would have to deal with forever. DBS is great for movements, but it does nothing to improve the mess that is my vagus nerve. 

Denial is a powerful force, one that can convince even someone who's entire life aspiration is science to ignore logic and reasoning and put their stock in hope, because when it all comes down to it, our human desire to live is stronger than any other force. 

So after I had DBS #1 in June of 2015, I tried to carry on my life as normal, heading back to Redlands for my senior year, which I was excited for. At that time I had thought that I wanted to be a medical doctor, an ambition which I decided in the end was not the path I was meant to walk, which is a whole other story that I will have to tell at some point. But the point is that by the end of the end of the Summer of 2015, I had taken the MCAT (which was super brutal two months after brain surgery and no sleep for four days thanks to not yet controlled insomnia), had written a personal statement about why living with my disease inspired my desire to work in the medical field (which you can read here if you would like), and I was planning on applying, casually in between brain surgeries. 

Senior year started off rough. I was struggling with the cognitive recovery of DBS, it made it difficult for me to concentrate. Back at school, I lived on sandwiches from the UofR plaza market, and on ensure shakes. Some days I could barely drink an ensure, other days half a sandwich was my entire meal. By the time I went home for thanksgiving I was barely functioning. It had been a few days subsisting on a few sips of water and I had had enough. The day before Thanksgiving, my dad desperately took me to urgent care at 4pm.

The doctor called the on-call GI doctor, and his advice was to come back at 5am the next morning, GI docs have to do rounds in the hospital between 8 and 9, and if I could get in and have a GI consult requested, they would be able to see me. 

So there I was at 5 am on Thanksgiving in the ER, and the jerk of a doctor didn’t want to call GI, even though I was so dehydrated it was showing up in my labs. Because my nutritional markers were just at the very bottom of the range, he was refusing to call GI, and I begged him. I was miserable and desperate for someone to fix me.

He begrudgingly called, in a very snarky tone informing me that if they came it would just be a courtesy consult.  

Well, whatever. Jerkface doctor was wrong. The on call GI was the same one as the night before. This GI doc would become my GI doc, and it took him all of five minutes to tell me I was presenting classically with Gastroparesis and given my history with Parkinson’s, it was clear this was what was wrong.

Then he told me that I needed a feeding tube, and that given my state he would have put one in that day, but there was no anesthesiologist available on Thanksgiving Day. 

Its fair to say I was a little bit shocked. “oh no, see when I have my second DBS surgery in like three weeks this is going to go away.”

Yeah, it didn’t.

But he treated me with kindness. He said ‘its very unlikely that will happen but okay, lets say it does. You will still need help gaining back the weight even if you do get your stomach working, and the tube can help if it comes back slowly. Besides, its totally reversible, if you don’t need it later, we will just take it out." 

To be fair, I don’t think he truly understands just how painful tube surgery is because from a docs perspective it’s a 30 minute quick little surgery. From my perspective it was them stabbing me, pulling my stomach through the hole, sewing it and stabbing a tube through it. 
It was bad. But I am glad I did it, because he was right. It didn’t come back. I was holding onto a tiny thread oh hope that it would, even though I knew better. Denial is a powerful force.

So after all that backstory, we can FINALLY get to the funny Thanksgiving dinner story that I had intended to write this blog about but felt the need to write ten pages of background info so this story’s magnitude in my life makes sense.

Sweet Potato Casserole

Every year for a little longer than I have been alive, my mom has made this sweet potato casserole on Thanksgiving. She found the recipe in some random cookbook made by firemen for some charity that she had. It has Kalua in it which gives it this incredible flavor, and it has marshmallows on it.

So remember when I talked about sensitivities to textures and mixed foods?
Do you think I was even a little bit okay with this casserole? NO.
Marshmallows with sweet potatoes? Are you kidding me?
For 20 years, I wouldn’t touch the thing. The sight of it made me nauseated. And then there was 2015.

That Thanksgiving, after being told I was getting a feeding tube within a week, and not knowing if I would ever even get to eat a little bit ever again, I took a big spoonful of that casserole and said “what the hell, its now or never, may as well try this before I can never eat again.”

And I took a big bite. And it was delicious. And I loved it. With my family all waiting for my reaction, I burst into tears.

Literally sobbing (and I am really not a crier) I managed to utter “its so good, and I didn’t eat this for 20 years, and I love it and in a week I can never have it again”

And tears turned into laughter on the ridiculousness of the situation. I cried until I laughed and we all laughed until we cried. 

Moral of the story: Try new things. Live it up. You never know when something you love my be gone and you wasted 20 years of not eating it.

Happy Thanksgiving. A holiday with a screwed up history, but hey, lets all spread some thankfulness. The world could use a little more of that. And to my sick friends reading this struggling with the holiday food, you are not alone <3

Tuesday, October 17, 2017


Life has been a complete mess for the past few weeks and I didn't realize just how easy it is for something to come in and take over and make you feel like every little thing that you have worked so so hard for is all for nothing. Its easy to look back and only see the darkness, to forget how much you want the beauty that is ahead of you. 

This picture, circa October of 1999 at some awkward elementary school track and field thing, is one of the pictures I both hate and love the most. On one hand, it reminds me just how awkward and clumsy I have been for my entire life. I basically just got longer, not more graceful. And this has nothing to do with the Parkinson's that would hit me in my early teens. Well, maybe. That is debatable. Looking back I can see some signs even as early as this picture. Maybe I was just a really awkward runner or maybe there was early disruptions in my movement. Maybe my handwriting is just ugly and I couldn't use scissors very well because that was just me or maybe my motor skills were not developing properly. I have thoroughly thought this one over and over and my conclusion is there is no way to tell if early motor disruptions were early parkinsonian features or if I am just awkward in a non-neurodegenerative way. 

Regardless, this picture represents a pre-parkinson's me, the girl who was unknowingly growing up with a part of her brain degenerating, the girl who had no clue that in less than a decade she would be disabled. The girl who even though she was in last place because she really sucked at running, still had this look of focus and extreme determination. No matter how bad I was at running or how far behind the other runners I was, I had this spirit of fight in me that held up all the way through to the finish line. I could push out everything and anything and just focus on me getting myself to where I need to be, the fastest and best that I personally could, while ignoring the rest of the world around me. Instead of getting distracted by my last-place status, or anything else that may have come in my way, my motivation and determination never wavered. 

If only I could look back at this awkward little me, and see the same fluffy blonde hair and the same lack of grace while running and channel her, 18 years later. I could really use her right now.

Because at this moment, 18 years later to the month, this girl is a woman, in her mid 20s, and has come so far from this awkward elementary school track meet forever captured on primitive film. This woman still has this spirit of determination somewhere deep inside her, even though right now its really, really hard to find. Right now, I am fighting myself so hard to find the fight within myself, and its not working all that great. 

The past few weeks have been hell. And it shouldnt have been as hard as it was, but I was in a good place before it. I was doing really well. I had scheduled the GRE. I was getting all into the game of my grad school application. I was feeling like I was getting back up and that the future was bright.
Then, my allergy to adhesives intensified overnight without warning. 

My central line, which I have had for TPN for a year and a half, has always been an issue. I used hypoallergenic dressings and still had a reaction but it was tolerable. About two weeks ago it went from itchy and a little but of redness to full on welting and hives and bleeding. It got to a point where I had to go without adhesives, ended up in the ER, and have been in a benadryl-induced state of barely awake for two weeks. I finally got on steroids for it and am finally turning the corner, finally my skin is starting to heal. It felt like acid had been poured on my chest. It was truly awful. 

Now that I can have no adhesives anywhere near this, it scares me a little having an open central line but I have been assured it is safe. Still, the amount of healing that I have left is tremendous. My skin had been devoured and it hurts so badly. I didn't see this one coming

It amazes me just how easy it was for something to come in and flip my whole world over and make me feel like life wasn't even worth going on. These past few weeks I have felt a little hopeless, like something so seemingly small could just come in and take over and ruin my life, ruin my chances of getting back into science next year, it made me feel so lost, like I felt when I graduated and had to move home for health. Plan C as I called it. 

But I am going to get back up. The spirit in this picture is still within me somewhere. I just have to find her. 

Wednesday, September 20, 2017

A Thank You Letter to the Neurologist Who Saved My Life

I have talked a bit on different platforms about the long struggle that it was to get diagnosed many times before, and about my initial diagnosis of Dopa-Responsive Dystonia that my body proved wrong.  My initial diagnosis however set me on the course to getting the proper treatment when I was 18, and I cannot thank the general neurologist who managed to think outside the box and save my life.  I wanted to write him a thank you letter, but I have more to say than the 1000  character limit of my insurance’s email platform, so I decided to write the letter here and send him the link to my blog.  It is a nice thing to share here too.  Let it be known that without Dr. Wei, I would not be here today. 

Dear Dr. Wei,
It has been years now since you have seen me, I believe I was 19 or 20. Now I am a few weeks shy of 23.  The reason that I am writing to you is to say thank you, I would not be alive today if you hadn’t put the initial pieces of my diagnosis together back in 2012.
My life is complicated for sure, but it is amazing.  I went downhill pretty fast right after I turned 20, 2 years to the month after I started taking Sinemet I developed some severe Ldopa induced dyskinesia. From there it was a rapid decline until I was barely able to get up out of bed, I gave up driving, I could not walk safely without a cane at the least.  I had my first DBS (unilateral) on June 1, 2015 and my second on Dec 16, 2015.  The results are amazing to say the least. I could run around for the first time in years when they programmed my DBS.  I still take a ton of PD meds but it works. I have a great MDS neuro down in San Diego, she is worth the drive.
It doesn’t end there though, my gut shut down (gastroparesis and intestinal dysmotility) and I got a J-tube on December 2, 2015, about two weeks before my second DBS.   I was so miserable from starving, I was throwing up everything I was eating and I had no appetite.  Previously I was so active and then I was down to 105 lbs at 5’8”.  The tube was working for a while, it definitely improved the delivery of Sinemet (which we think is part of why I declined so fast). I ended up rejecting all of the formulas though, I was not able to get enough calories or hydration and even though I was running it for 24 hrs a day I was losing weight still.  I then ended up on TPN. I can’t eat at all really, but I have accepted that because I was so sick from the starvation, that I can handle being hooked up for 12 hours if it means I have the energy to go out and do what I love and live my life.

Despite all of the health challenges, and because of them too, I have gotten to do things that no one expected of me.  I graduated college in 4 years despite having two brain surgeries and a feeding tube put in.  I studied chemistry and then took time off to recover (I started TPN right after graduating.  It has been a year and a half, I was down to 100 lbs and now I am at 140 and feeling amazing).  I took the time to get to speak at amazing conferences like World Parkinson Congress and Stanford Medicine X.  Now that I am stable, I am going back to school for science, which is truly my passion.  I am applying for my doctorate in pharmacology.  My top choice at this time is UCSF, but I am still looking around.

The reason I am writing this to you is to say thank you so much for never giving up on me.  There were so many doctors before you who said ‘if I cant figure it out she must just be a dramatic teenage girl’.  You never stopped believing that someday we will find the answer.  I remember going home a few months before you trialed the Sinemet in October of 2012, where you really thought a panel we sent would show something and it didn’t, and there was nothing left at that time to do but wait.  I was devastated, I cannot explain how awful it is as a patient to be left without answers.  But you said ‘come back in a few months, I don’t have answers but this isn’t the end.’  Just by saying that you knew that no doctor can know everything, that just because you didn’t have an answer for me didn’t mean that I was not sick, that gave me more hope than I can even describe.  There were appointments where after talking to a doctor I would be so distraught that I would literally sob in the elevator, because all I knew was that my body is failing and no one is even trying to help me.  But after that appointment, in the elevator, I looked to my dad and just nodded.  I was of course upset that we didn’t have answers but for the first time in almost four years someone had not given up on me, and I can’t thank you enough for that.
I also can’t thank you enough for the wild idea to try Sinemet.  I honestly did not think it was going to work.  I went back to college with the rx and as it started to work I kept telling myself it wasn’t true. Two weeks later I went home for a weekend to visit my family, and they cried when they saw the difference in my movements and how much better I was moving. 
It saved my life and I mean that literally.  It set me on a path to figuring out the full puzzle of my diagnosis and the treatment gave me two absolutely beautiful years where I almost got to be a normal young adult.  Yes, I was always taking medicine and there were really painful and rough days, there was no doubting that I was still pretty sick, but I was managing really well.  I even got to do a Summer Fellowship in Baltimore at the Institute of Human Virology and live on my own on the other side of the country for a summer before things all went bad, and I really excelled academically.  Because of what I accomplished in the first two and a half years, I basically got away with taking 12 unit semesters for the last three when I was too sick to get up to go to class half the time.  But if you hadn’t made that initial discovery, I am pretty sure I would be actually dead right now.  Before my DBS I was having major issues swallowing, and I was frequently in the ER for freezing episodes which were so scary.  About two months before I had surgery I had woken up one day unable to walk or talk, though I was fully conscious.  I was taken to the hospital via ambulance and it took all day and a lot of benzos for me to be responsive again, there was nothing else anyone knew how to do. My quality of life was just awful.  Now even though I take 20+ pills a day and a patch, I run infusions for part of the day and have both a central line, a J tube, and a DBS unit, my life is an amazing and beautiful mess and I wouldn’t have it any other way.  I get to follow my dreams in a very different way, but it is mine and it is only here because one doctor had the compassion to never give up on me. 

All the best,
Jasmine Sturr

Saturday, September 2, 2017

Some Things Are More Than Coincidence

One of the greatest marvels of the world is that every moment in the entire history of the universe right up until now happened in such a way that I am sitting here on the way to the ophthalmologist's office typing this, or that you are wherever you are right now reading this. 

A Snapchat of my dilate eyes after my appointment

It was 2011 and I was a senior in high school. Just an average day, sitting in calculus wishing I was doing anything but finding the anti-derivative of whatever. I blinked a few times and something didn't feel right. I tried my best to ignore it, but it was just driving me crazy. At break I went into the bathroom and I saw some swelling around my left eye that was definitely not there a few hours before. Ignoring it I went about my day, finding it harder and harder to keep my left eye open. In the days before front facing cell phone cameras, I would pop over to the bathroom at some point during every class to look over my swollen eye, growing a little concerned that it wasn't getting any better and seemed to be getting worse. I went home that afternoon not stressing all that much. The next day though, I could not open up my eye at all. It was pretty clear that it was time we went to see someone. 

That begs the question, who exactly do you go see when your eye is swollen? Ocular emergency is a thing, a fairly infrequent thing, but certain issues can actually be vision threatening and require immediate care. Even still, it felt kinda weird to go to the ER with a swollen eye. With my insurance you can't just go to an ophthalmologist without a referral, and I actually didn't have a primary doc I could even call, I was not 18 yet and my previous pediatrician had left the hospital so I was just sort of waiting until I was 18 to go see my parent's primary doc. So I had no one who could just give me a referral. Then my dad gets the brilliant idea to call John, a family friend who is an ophthalmologist in private practice. He does not take our insurance but he tells my dad to just bring me in. 

Some numbing drops and an eyelid flip later he finds the culprit of the swelling, a little calcium deposit embedded in my eyelid. Basically a little rock. It is nothing insidious, it can happen to anyone. You have calcium in your body and sometimes excess calcium can form a deposit in your eyes, aggregates of calcium precipitate clump together in the form of an extremely annoying but nonthreatening rock in your eyelid. It was essentially scratching the surface of my eyelid, which is why my eye got so swollen so fast. Upon removing the rock from my eyelid, I instantly got better, I could independently open my eye again. He wrote me a script for some eye drops to take for a week as it healed. I thought that was it, but then he said something that really surprised me: I am seeing something worrying in the back of your eyes. I want to dilate them in a week, I think you might have glaucoma. 

What? Glaucoma? Isn't that for old people? 

See, this was before I had ever heard the word Parkinson's applied to me. This was my first old person's disease. I like to joke that I collect old person's diseases. I mean seriously who but me managed to get glaucoma and Parkinson's before I could legally vote? 

So a week went by. I remember talking to my anatomy teacher about it (which I was taking on top of physics as an elective, I was a nerd then too!). He asked me, well yeah glaucoma would be rare in someone your age but its possible, have you had headaches behind your eyes? 
I thought about it, and actually yes. I had been having headaches behind my eyes. But I didn't think much of it, probably just stress I presumed. Turns out it is an increased intra-ocular pressure (IOP) which causes this. Trying to push any worry out of my head, (which wasn't too hard given this was most definitely not my first time waiting on a medical test or test result) I went on with my week until my dilation day. I went back to John's office and they put the dilation drops in. 15 minutes later I had massive pupils and they did my first nerve fiber layer analysis. And there it was on paper. I definitely had glaucoma. 

That diagnosis was a bit of a shock to the system but it was quickly followed by the good news. While it looked like I had moderate damage we could prevent further damage. I was started on a once daily eye drop called Lumigan, a medication to lower my eye pressure. Its kept me stable since 2011, the pressure headaches are gone, and my eyesight has been saved. Apparently I have a tiny little blind spot that I don't even notice, it was picked up on a field vision test. Your brain is really good at compensating for that, and I wouldn't even know it was there if they didn't specifically look for it. 

Today's dilation was actually taking a picture of my optic nerve. The 'cupping' as its called is still there and pretty obvious when put next to a picture of what the back of your eye is supposed to look like, but it does not look worse than it did 5 years ago when they last took pictures in 2012. 

In 5 months I am going back for another fiber analysis, we like to have that done once a year or so. But so far, so good, things have been stable and it looks like the treatments are working beautifully.  As long as I keep up with it, I should not lose my peripheral vision. If my eye had not swollen up from a random embedded calcification, we would have never found my glaucoma. My ophthalmologist has told me that I would have noticed it somewhere between ages 30-40. Your brain is so good at compensating for blind spots that you wouldn't notice it until you had already lost 30-40% of your vision, and once nerve damage is done, you cannot undo it. 

So a rock in my eye saved my vision. Call it what you want, but I cant help but believe that this was not so random after all. 

Thursday, August 17, 2017

En Pointe!

After DBS surgery and a whole lot of med management, I was told that the most important thing that I could possibly do is exercise intensely. It is the only thing that is going to keep me mobile at this point. I signed up for Rock Steady Boxing, a Parkinson's exercise class, and ballet. 

Me at RSB with the lovely Iris, the youngest boxer and the oldest boxer in the class. Our age range goes from 22-90! How amazing is she?! 

The PT told me to try something I had done when I was young because of muscle memory, so I decided I wanted to go back to Ballet. For over a year now, I have been training multiple times a week. I have gotten pretty good at it too! Good enough and strong enough to where I am going to begin to learn pointe. 

Why is this such an incredible mind blowing accomplishment for me? My ankles. 
Back before DBS, one of my biggest problems was that my left ankle was severely pronated inwards. I could not hold it straight and at times it would twist inwards at 80 degrees. You really cant walk on the side of your foot comfortably or safely. I was casted for a custom ankle foot orthosis (AFO) and wore that for two years until I had DBS.

My ankle in 2012, a few weeks into my sinemet trial. Can you believe this was actually an improvement on what it was previously?

My AFO was one of the first things that made my disability visable. I was a little upset that I needed it at first but I grew to love it. 
Loving a medical device that makes you stick out as the sick girl? Well here's the thing. It hurt like hell not to have it on. I was so miserable and limited and had to be so careful not to trip over my own foot. Then I got the brace and I could walk and go wherever I wanted with a lot more comfort. Were there times I was self conscious of it? Of course I was. I love skirts and shoes. It was hard to find cute shoes to fit into it, but I got really creative and found some amazing and cute shoes that my brace could fit in.

People would always say stupid things like I am so sorry you have to wear that thing! 

I am not sorry I had to wear my AFO. It gave me mobility and freedom. When are we going to stop looking at assistive devices and think they are bad things? They grant people with disabilities freedom and independence. They are not something to look down on, they are really freaking awesome and should be celebrated.

Celebrating my AFO. This is my sorority big sister Courtney and I, in 2013 when I joined Alpha Sigma Pi at UofR. Courtney tore her achilles during my process. We titled this picture 'sisters help hold each other up'

During the DBS surgery, they have you awake. They turn it on to test during the procedure to see if they are in the right spot. I remember the moment where I felt my body start to work again. I remember my super rigid shoulder relaxing and I remember my ankle being able to straighten and I could tap my foot with a smooth, controlled motion, which was hands down the most incredible feeling in the world, to feel your body that had been so immobile for years begin to all work together again for the first time in forever. 

Before DBS, if I tried to even point my foot I would have massive muscle cramps all up my leg. Dystonia would set in and it would hurt so bad. After the surgery that all changed. I could walk without the AFO and rebuild all of the strength I had lost after six years of PD. And here I am, two years post DBS and lots of hours of practice, and my ankles are strong enough to go en pointe. 
Actually, my ankles and feet have gotten so stong I needed the hardest pointe shoe shank! My feet were too strong for the medium strength one, I was practically breaking it my going up en pointe! I was so amazed by how far I have come. I cant wait to see how far I can go. 

You are probably wondering now, what is the point(e)? Pun intended. In 10-15 years, I wont he able to do it anymore. What is the point of even dancing anyways? I am just going to lose that ability, just another thing that PD will take away from me. Dance for me is an expression, there are tangible goals that I can reach and be proud of. Its also nourishing to the soul, I feel the beat and let it flow through me. Its also sort of feeding the experiences that I never got because I was so sick as a teenager. All of my ballet classmates are teenagers. I am ten years older than most of the pointe class. But when I was their age, I was falling apart. My body was slowly deteriorating. I was losing control, I could barely walk let alone get to continue dance and get to be en pointe. In some ways, I am getting to do things that I missed out on in my younger years. It may be our of order and it may be temporary, but its here now and I get to be proud of my achievement. I get to enjoy feeling like I am floating through the air, the ethereal feeling that ballet provides. 

I am doing it for the love, and to have the experience. It isnt about how long I will be able to dance, it is about the fact that I danced and I loved it. Its about reaching a goal and being proud of that. Even if I can no longer walk in the future, I danced in the past, and therefore will always have that with me. 

Life is all about experiences. I am so fortunate to have had so many opportunities and so many incredible experiences. This is one experience I never thought I would have, and getting it is just exciting. Getting fitted for my shoes, sewing my ribbons, getting to rise up en pointe for the first time, I am loving and living every moment of it. 

I have been teaching meeting for learning at my church (Quaker speak for 'Sunday school'). It is something I am passionate about because growing up, the youth program really saved my life. It was the only place for many years that I felt truly open and happy and able to just relax and be myself. The Sunday discussions and the retreats and service projects gave me a safe place to have experiences and to find my own way. No one told me what I had to do and when to do it. I try to provide that same space and guidance for the amazing young people we have at our meeting to experience the world and their faith. They are activists and they are passionate and they are beautiful people and they teach me so much about life. Dance is in its own way a part of my spirituality. Its something that I get to experience now and it is a part of healing my soul, something that I really need at the moment. As I have written about before, medicine can fix your body, but when you go through a serious illness, you will not be okay if you dont spend the time healing the emotional wounds that it creates. 

Starting pointe just a month shy of 23, after having had Parkinson's for more that 8 years may sound crazy, and maybe it is. But in 10-15 years, even if I lose the ability to dance, PD will never take away my joy in dancing. Maybe when I have to retire my pointe shoes for good I will be sad. Maybe I will be angry that I ever fell in love with doing dance because it was just another thing taken from me. But I will remember performing. I will remember the feelings that I felt as I leaped across the studio, the sense of accomplishments when I finally got my splits. I will close my eyes and imagine my feet executing all the steps with precision and grace and my soul will be full. And I wont stop dancing. I may not dance the same, I may not dance as well, but that does not mean that it is any less valid. It is just different.

Me finally achieving my splits. it only took a year on daily stretching....

Am I taking a risk? What if I cant do it, what if I lose strength quicker than I thought I would? Risks are important to take sometimes, Pushing myself beyond my boundaries is what gives me that thing they call a quality of life. If I played it safe, I would miss these experiences. I might be content, but moments of pure joy are found in these risks. 

So I lace up my pointe shoes and rise up. 

Until next time, 

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