Tag: #MSHope

December 2019

Life On the Boil

by amysaxons

Somehow, every time I steam vegetables on the stove I manage to get busy with other meal prep work and look away at the exact moment the water starts to foam and boil over. It leaves an icky, mucky mess on our glass stovetop that requires a lot of elbow grease to clean up.

The entire month of December can sort of feel like this, too much to do and not enough time and energy to do it all. Pageants, musicals, parties, decorating, cooking, shopping, wrapping, organizing, traveling… the list is endless and it comes on top of our usual work, church, and family duties. In an effort to create and maintain memorable traditions with our children, family, and friends, it seems we overextend ourselves. Stress begins to boil over, taking away the joy of the season and making us feel like a mess on the inside.

These days, Christmas or not, many people choose to live their lives set on a constant boil.  Every spare moment of time is filled with activity and on the go.  I don’t want to leave the impression that it’s wrong or bad to have a full calendar. I suppose I used to do that too when I still could.  It felt good to be busy with school and church activities, going to the movies or hanging out at a friend’s house, attending concerts, having dinner out, or just riding around town with my best pals.  It was fun being away from home and it felt as if I was seizing the opportunity to really get my money’s worth out of every moment of life.

I don’t want to go back and change much about that time in my life, except that I wish I would have weeded out some of the empty, self-indulgent things I did in a mindless effort to keep life bubbling away. Instead, I would have benefited from some unfilled moments so I could study, reflect, and work on my relationship with God.

Thanks to MS, I rarely live life on the boil anymore. Most of my days are somewhere between a long, slow, gentle simmer and stone cold. Amazingly, just as with food, there is as much nourishment and fullness in life whether it’s served hot off the boil, warm from a good simmer, or cold straight out of the fridge.

On most days, I am glad life has slowed down. It has allowed for me to boil life down to the essentials instead of life boiling me down. Yes, sometimes it’s true that I would like to have a bit more boil and a little less cold, but the joys of life can be savored either way.

My wish for you this holiday season is that you purposely carve out some quiet time to grow your relationship with God. You likely won’t find Him in the chaotic, hectic, hubbub of festivities, but in the quiet stillness of a holy night about 2000 years ago.

November 2019

If Only… NASA, Amy, and Youth

by amysaxons

Sometimes the difference between an intricate, highly complex machine working or blowing apart is down to a simple, small component’s integrity at one single moment in time. NASA learned this lesson the hard way in both the Challenger and Columbia disasters. In both cases, the defective components were made months and even years before either shuttle was assembled.

As the symptoms of my MS have progressed, I am reminded of how “fearfully and wonderfully made” (Ps 139:14) each of us truly are. Despite billions of dollars worth of research, centuries of learning about the anatomy and physiology of the human body, and life-long careers devoted exclusively to trying to figure out what goes wrong to make MS activate, there is still so much we don’t know. In the early 1600s, German mathematician and astronomer Johannes Kepler was correct when he described his study of planetary movements as “thinking God’s thoughts after Him”. This statement is true in every avenue of mathematics and science, especially in the study of biology.

Somewhere, somehow, some way, long before I ever had any symptoms of my Multiple Sclerosis, all the viral, environmental, hereditary, and biological elements were just right to kick this disease into action in the biological petri dish that makes me me.

My immune system got all confused and started destroying itself. Thanks to MRIs, I have seen for myself the white smears and dots scattered across my brain and spinal cord where tell-tale signs of damage can be easily seen. It remains inexplicable how it happened, but that doesn’t stand in the way of it being true. All my progressive, worsening problems with balance, walking, incontinence, dropping things, quick and excessive fatigue, tingling, and slow processing are all due to these white globs that made their initial marks nearly thirty years ago.

It’s staggering to imagine that such small blobs etched out so long ago have created the big problems I deal with every day.

Hmm, I feel a life lesson coming on. Sometimes it’s the little, but wrong, things we allow ourselves to do early in life that eventually turn out to be our undoing in the end.

If only someone would have checked the integrity of the O-ring on the right solid rocket booster before the Challenger took off, seven lives would have been saved. If only one day we could figure out what causes MS and how to stop it before other people’s neurologic integrity becomes comprised and they end up going through a progressively worsening disease process. If only we ourselves strove to live Godly lives and to teach the young how to choose right, so many lives would flourish and God would be glorified. If only.

November 2019

Sister Trip on Mom’s Birthday

by amysaxons1 Comment on Sister Trip on Mom’s Birthday
Sister Trip on Mom’s Birthday

This past Monday was my Mom’s birthday, it was the fourth year my sister Susan and I celebrated it without her.  It’s always a tender kind of day for both of us, one that’s full of sweet memories hemmed in by missing her.  

This year Susan flew from Texas and I flew from Missouri to spend Mom’s birthday together in Florida.  Mom always loved that we were close as sisters and she would have thought this was an excellent idea! It certainly was, ummm…, an interesting experience for me flying solo. I was drug backwards through two terminals, in and out of three elevators, and on and off the sky train to get to my connecting flight to Orlando via Dallas. 

img_20191102_101233_exported_466_1572707906458  img_20191102_104455

We stayed at my sweet mother-in-law’s vacay house near New Smyrna Beach.  We filled our days with lots of reminiscing, stories both old and new, lots of laughter, and, of course, exceptionally good food!

 

We got sand in our toes and sea breeze in our hair the first full day.  The tide was in and the waves were white-capped one and all. That afternoon we discovered the scenic, old downtown sidewalks and stairs into nearly every store were not meant for me (or anyone else with limited mobility) to peruse, so we went back to the house and lounged the afternoon away.  

 

Mom took us girls to Epcot over spring break in 1988.  How can it have been that long ago?!  Yikes, we’re getting old!! Susan has been back since then but I haven’t.  So, we decided to go on Monday, November 4th, Mom’s birthday. Mercy, we enjoyed ourselves and know Mom would have approved of all the sights, sounds, and tastes!  We lucked into being there during the International Food and Wine Festival. We ate our way around the world and let our inner gluttony rule until we had made a full circle of the park.

As good as the other days had been, I think our last full day was probably my favorite.  We found a beautiful, quiet, out of the way, public park with a pier jutting out into an ocean inlet.  We sat and soaked up the Florida sun, the sounds of the leaves rustling through the palmettos, and the peacefulness of our surroundings since no one else was there.  

As we turned around to walk back along the pier to our rental car, we noticed a common egret perched on the wooden rails. It looked straight at us and then serenely continued to preen and go about his business as if it knew we were harmless.  Susan and I quietly inched our way closer taking picture after picture until we were no more than three feet away.  Egrets are very common shore birds in Florida and someone else residing there might have hardly noticed his presence. However, we were mesmerized by him and thought he was anything but common, as his name implies.  His feathers billowed in the wind and his black legs and toes were a beautiful contrast against his white body. And his eyes, his eyes! I’m positive he not only saw us but appraised us as he stared our way. We three stood in our strange, small huddle for several minutes with him posing and us snapping picture after picture. He was the one who had called our meeting together by his mere presence so it was only polite that he should be the one to adjourn it.  With a deep bend of his knees and a long stretch of his wings he was in flight, soaring over the waters and away from us. Susan and I talked about him and what a fascinating creature he was, but we were just one side of the experience. I’m back home in Missouri now but find myself thinking of him. I wonder if he thought anything at the time of the two women held in his charms and if we left any sort of lasting impression on him that he remembers now.

Much like the memories of our Mom, his brief encounter with us will linger and live on inside us.

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October 2019

I’ve Become a Little Sew and Sew Thanks to Information Overload

by amysaxons3 Comments on I’ve Become a Little Sew and Sew Thanks to Information Overload

Hello Friends, happy October to you!

It’s been three weeks since I finished my Ocrevus infusions and, thankfully, I have returned to my normal MS baseline. I’ve had quite a few people ask me if I have noticed my MS “getting better yet”. Sadly, the answer is no. There aren’t any cures for MS and there is nothing to take away the damage that has already been done. The purpose of Ocrevus, and all the other disease modifying drugs, is to try to stop any further damage from occurring. There are many researchers working hard to try to figure out how to not only stop MS from progressing, but also how to repair damage to the nervous system in order to reverse the debilitating symptoms of the disease. This is a pretty good segue into the information overload mentioned in the title.

Perhaps you are like me and have had to take breaks from social media and the constant barrage of local and international news for the sake of maintaining your own sanity. Well, about a year ago I signed up to a couple of daily MS research news outlets. They arrive in my inbox each morning and present several summaries and links from around the world to everything ranging from research proposals to current studies in mice (poor little mice, they’ve born the brunt of forward thinking MS flops and successes), comparisons of a current MS drug against a possible new drug, clinical trials in all manner of stages, forums about MS, and even articles by fellow MSers about how they live and cope with the disease.

I typically do like to be on top of all the latest MS information, but here lately I’ve been feeling like it’s all too ivory tower. Down here in the trenches, at least in my trench, it’s muddy and wormy with the walls always caving in and needing constant repair. I’m covered in the dank, earthy stench that never leaves my nostrils, even when I dare to raise my head in an effort to try to go over the top, despite having trench-foot. To top it all off, a hail of bullets marked MS come flying over my head intermittently keeping me in a state of constant vigilance and exhaustion.

So, at least for now, I’m going to lie low down here in my mucky but familiar trench and try not to worry about what the people in the ivory towers conjure up for the next move. I’m not giving up on it and I’m glad someone is in the ivory tower, I just need a break from it all for a while.

To that end, about a month ago, I dusted off my sewing machine, turned the music up, and started stitching away! My Mom was a wonderful seamstress and even owned a fabric store when I was young. She showed me how to sew but it didn’t come as easily to me as it did for her. I took a sewing class in high school and had a few lessons through 4-H, too. I’ve sewn a few things through the years as an adult but never really thought of it as something I could get into as a regular hobby. That is until now. I am thoroughly enjoying myself and looking forward to each new day to get stuck in to some new project! The first one was this little sewing catch-all.

I used the leftover material from the catch-all to make some cute bowl huggers for the microwave.

While it is true that some days I am too tired to sew at all and other days I have to take breaks after just a little bit of sewing exertion, just being in my little sewing space brings me joy. For example, looking at all this thread…

…and ALL this fabric with cats ❤️ brings me inspiration for new projects to try when I eventually do have energy!!

I finished up a couple of these boxes yesterday so I would have a better way to see and store my fabric.

I’ve made several things for others, too, which has given me joy and purpose. Fair warning: If you get a Christmas gift from me this year it’s probably going to be homemade. But don’t worry, not all the fabrics I’ve been stashing away have cats on them 😉.

Signing out from the trenches and hoping you’re upwind from me!

Amy

September 2019

Bike 150, Jammies, and OJ #2

by amysaxonsLeave a Comment on Bike 150, Jammies, and OJ #2

Hello Friends!

It’s time for my next heapin’ helpin’ of Ocrevus! I’m writing this at the hospital while the Ocrevus Juice (“OJ”) is going in.

Thursday, August 29, 2019 was the big day for my first infusion. I was excited to get the OJ going…
… and today I keep thinking that I am willing allowing this whole business to happen to me at a cost of $17,000 per infusion.

My life has been a pretty low key affair since I posted last. As far as the OJ is concerned, I felt decent and it seemed I even had a bit more energy than usual for the first couple of days, despite a light, chronic headache. Naturally, the penny eventually dropped and on the third day a monstrously oppressive fatigue settled in. It felt like I was trying to balance a bowling ball on my neck instead of my head. My legs were concrete pillars and my feet were made of iron. This tyranny lasted for five days before finally releasing me to a much kinder, though still pretty strict, general tiredness. I wonder how it will play out this time. I’m hoping it demands rocky road ice cream 😉.

Todd and I did have one HUGE outing this past Saturday.  He rode in the MS Bike 150 in my honor 🥰. I was so proud of him. It was brutally hot that day but he pushed on and completed 102 miles! As I’ve mentioned before in previous blogs, I don’t drive much anymore because it makes me tired. So, it was a ginormous effort for me to drive 80 miles to the finish line to pick him up. Both of us gave it all we had in the name of fighting this crazy disease. I ended up paying for the effort for a couple of days. On the upside, I spent two days in my jammies snuggling with our cats whilst alternatively watching TV and reading.

My hero closing in on the finish line.
Sweating it out in order to cheer my Todd the last 100 feet. If you squint you can see the orange finish line behind me.
Time spent with cats is never wasted.
~ Sigmund Freud

I have no idea when I will feel lucid enough to write another post. But I do sincerely thank you for joining me as I meander through the wilderness that is MS.

May God be with you.

July 2019

The Next Step: Ocrevus

by amysaxons2 Comments on The Next Step: Ocrevus

The last few years it’s been hard to tell if I’m climbing higher up the rugged mountain of MS or going down deeper into the barren desert of it. Whichever way you look at it, I can’t see the end point.

About three years ago my neurologist and I discussed changing my disease modifying therapy (DMT) drug to one of the new, top-tier, “aggressive”, infusion drugs. These new DMTs carried long-term risks that made both my husband and me very nervous and reticent to hop on the bandwagon. We hoped there might be other options in the pipeline and/or there would be more information about how others managed on them before starting them myself. This decision was not a zero risk scenario, though. By not taking one of these newer DMTs, there was a good chance that my MS would continue to advance and I would accrue more irreversible damage manifesting as additional physical disabilities.

Sure enough, I’ve slowly (thankfully) accumulated more disability while staying the course with one of the medium-tier drugs. I saw my neurologist this past Thursday and she had a very frank conversation with me about rethinking my options. She has earned my trust and loyalty over the years and has gone far above and beyond the call of duty for me on numerous occasions. So, when she told me that I have only continued to worsen, albeit slowly, and it was time to up the game to one of the top-tier drugs, I listened. Within the span of time between our conversation three years ago and last Thursday, over 100,000 people have switched to the newer drugs making the risk to benefit ratio much easier to see. The data looks good that the drugs have helped slow the progression of MS for a majority of people. They are not cures and nothing can repair nerve damage that has already occurred, but these top-tier drugs really do seem to the best thing out there by a pretty big margin.

The next step is to get everything squared away with my insurance–it’s already in process. I will then have to endure an 11 day regime of meds to washout the current drug from my system. That doesn’t sound like much fun!

We settled on a drug called Ocrevus because it seems to have the least scary possible side effects and a tolerable protocol. The first infusion will be half of the regular 600mg dose followed by the other half two weeks later. Thereafter, I’ll get the full dose every six months. To decrease reactions to the medicine, they will infuse steroids and an antihistamine before beginning the chosen drug.

It’s been a lot to wrap my head around. So much has changed within the realm of MS since being diagnosed 29 years ago. But for me personally, one thing has remained the same. I had no idea what the future related to this disease held for me back then, and I have no inkling how far it will go in the future. I suppose that’s fitting in it’s own way because the only thing MS has ever promised to be is unpredictable.

I’ll keep you posted as I go through this next step along the way.

July 2019

When Music Sounds, Gone Is the Earth I know

by amysaxons1 Comment on When Music Sounds, Gone Is the Earth I know

Without a job the days tend to blend together.  I no longer feel a tinge of sadness that another Monday has rolled around or the excitement of the work-a-day world that it’s finally Friday again.  But, for some strange reason, I definitely struggled through Monday this week.  Was it because hubby had to go back to work after a lovely four day weekend together?  I feel so much more freedom when he is home because it is the only time I really get out of the house these days.  I don’t know, but I definitely had acute symptoms of Monday-itis.  

Oh, before I forget, I should take a step back for a second.  Remember that post a couple of weeks ago about me riding my bicycle and all that bravado of determination to stick it to MS and just ride anyway?  Yep, that one. Well…that sent my MS rolling on the floor in screams of laughter and hilarity. It could hardly catch it’s breath long enough to snidely retort, “That’s a good one, Amy!” 🤣 😂

I have gotten on my bike four or five times since but I’ve come to the conclusion that a seven minute ride just isn’t worth five hours of drooling on the couch in utter debility.

So now, back to the story of Monday.  I got up early to ride my bike and, to be fair, got along better than usual.  I rode for 17 minutes and only had to rest for 45 minutes before being able to take a shower and brush my teeth.  The fatigue settled in heavily thereafter, though, and was thick and heavy for the rest of the day. I was bored and my mind was clear enough that I wanted to be doing something.  On three separate occasions, I tried to come up with something to write about. Nothing but a blank screen stared back at me. Honestly, after the first minute or two of nothingness, the screen wasn’t strictly blank, it looked a lot more like Spider Solitaire.  I decided I was wasting too many brain cells doing such a mindless activity and was determined to do something productive. I emptied the dishwasher and swapped wasting brain cells for wasting energy I did not have. I then decided to work a little on a sewing project I had begun a few weeks ago.  Who knew sewing took so much energy?? URG! 

I tried reading.  I love to read and take great delight in doing so nearly every day.  Why didn’t I feel like reading? Hey, Monday, cut me some slack! I tried watching TV but I couldn’t find anything that interested me.  I finished a puzzle I had started the day before but it only took about 15 minutes. I tried to watch the birds but apparently they all colluded with Monday and went to someone else’s feeders.

Having exhausted all the usual pursuits that keep me busy when I find myself forced to sit all day, a sudden stroke of genius popped into my mind.  Music! I will listen to some music!! 

I have a fairly eclectic taste in music.  My music library is a hodge-podge of various decades of rock, punk, swing, big band, blues, jazz, folk, bluegrass, Christian…pretty much anything that isn’t country or rap.  I’ve been listening a lot to rock, blues, and Christian the last few months but these did not fit the bill on Monday.  

If I was ever sick during the school week while growing up, my parents would drop me off at my Grandma Lois’ house and she would take care of me until they were done with work.  Grandma always had her radio tuned to KTXR 101.3, which was known back then as “The Gentle Giant”. They played a kooky mix of soft rock and various kinds of instrumental music. We never listened to KTXR at our house or in the car but I loved listening to it at Grandma’s house.  Like all kids who grew up in the 70s and early 80s, I watched my fair share of The Lawrence Welk Show. Although I wasn’t ever really interested in listening to any of the lounge act singers, I was a huge fan of the orchestra, especially when they played by themselves. Somehow these two weirdly-paired entities of my childhood faintly illuminated the beginnings of a serious passion for a genre of music I wouldn’t have much exposure to until college.  During 1989, while attending university, I discovered the local National Public Radio station in town. They played classical music several hours during the day back then and I suddenly felt like I had discovered the songs of angels. No other genre of music has ever come close to the joy and delight I have found through classical music.  

I guess like all things in life, you go through phases of binging on one thing to the exclusion of all others until something brings you back to the center of some old passion and you relive the fundamental elements that drew you to it in the beginning.  

And so around 1:15 in the afternoon all the “-itis” of my Monday disappeared.  My heart soared upward, untethered from my languid body, until I no longer knew if I was part of this world or had joined the mirthful realm of the next.  I cried listening to Chopin’s Raindrop Prelude and Etude Op. 25 – No. 1 because of their limpid, beautiful timbres. Brahms’ waltzes, especially my favorite, No 15 in A Major, Op. 39, felt like liquid love washing away all the dullness of the day. Beethoven, Mozart, Bach, Massenet, Debussy, Vivaldi, Schumann, Elgar, Ravel…one after the other until I was too blissed out to care that I was under the thumb of MS that day.

Music, when applied to just the right heart at just the right time, is the strongest balm one can apply to weary souls. 

Music
When music sounds, gone is the earth I know,
And all of her lovely things even lovelier grow;
Her flowers in vision flame, her forest trees
Life burdened branches, stilled with ecstasies.

When music sounds, out of the water rise
Naiads whose beauty dims my waking eyes,
Rapt in strange dreams burns each enchanted face
With solemn echoing stirs their dwelling-place.

When music sounds, all that I was I am
Ere to this haunt of brooding dust I came;
And from Time's woods break into distant song
The swift-winged hours, as I hasten along.
  ~ Waltar De La Mare

April 2019 Posts

MS Walk 2019 is in the Books

by amysaxonsLeave a Comment on MS Walk 2019 is in the Books

It turned out to be a BEAUTIFUL day to take a walk, a very special kind of walk. There was a huge community turn out for the MS Walk, full of friendships both old and new. Several friends from church got together and created a team, Amy’s Axons, in my honor without me even knowing about it! Owing to such a kind and loving act, the walk this year was extra meaningful to me.

Highlights included – the Central High School Kilties marching us out as the walk began, Hurts Donuts, Einstein Bagels, lunch catered by Los Cabos, a variety of vendors raising money for MS, and a live band, just to name a few.

It’s always encouraging to see others living with MS supported by friends and family on their teams. I had the opportunity to meet a couple of people who also have MS. Both of them, like me, stressed how much they relied on their friends and family support in order to live with this disease. This fact can never be emphasized enough, without the help and kindness of others I would be unable to live on my own.

Many advances have been made in recent years in the quest to understand and treat MS. A recent report revealed that the number of people living with MS in the USA was around a million, nearly twice what had originally been thought. Now, more than ever, we need to find a cure!

March 2019 Posts

Drop Everything! #ThisIsMS Awareness Week

by amysaxonsLeave a Comment on Drop Everything! #ThisIsMS Awareness Week

If I had to have a bumper sticker permanently affixed to my back, it would probably say, “Don’t follow in my footsteps, I bump into walls.” Actually, I don’t just “bump” into them, I tend to fall into them. Lately, I also lean on them when I walk to help keep my balance, but that’s neither here nor there. “I’m not drunk, I have Multiple Sclerosis” or “My bruises and scars tell a story, the story of my MS” are two common sayings in the MS community. Clumsiness and coordination issues are typical problems with MS. I noticed mine started about 8 or 9 years ago, but they gained momentum from 2017 onward and have really spiked in the past five months.

After I dropped the coffee can a week or so ago and was cleaning up millions of grounds from the kitchen floor, I got to thinking I should document all the things I drop in a single day. Since it is #MSAwarenessWeek , I thought it was as good of a time as any to share something MS related from my typical day.

So, the following are pictures of all the things I dropped that day, starting with the milk I got out to add to my coffee that morning. We ended up having to go old school and open the container like kids do from school milk cartons. When the carton fell, it somehow managed to tear the plastic rim of the pour spout away from the surrounding cardboard.

Next, I tried to make a fruit smoothie for breakfast. By the time I had finished there was probably only half of the yogurt left in the container because I dropped it…twice!

I really do try to be careful, but klutziness just happens wherever I go! {sigh} I’d like to say my gawkiness happens most when I am distracted or multi-tasking, and that I can control it by just focusing a bit more, but that’s not true. It does occur more often when I am tired, although it hits on less tired days, too.

I did eventually manage to finish making and eating the smoothie and moved on to taking my daily fiber gummies. I try to eat a healthy, balanced diet, but MS has a way of creeping into absolutely every part of life. When you can’t walk or exercise every day and you have to take medication to manage muscle spasms and excessive spasticity, it’s hard to keep your gut moving. I imagine you can work out the rest. Anyway, this peach flavored goo never made it to my mouth.

The rest of the day progressed in a somewhat graceful manner, but I decided to err on the side of caution when making dinner. Todd bought me these handy-dandy, cut-resistant gloves a few years ago to keep my digits safe. I thought they were a good idea, too. The P.A.s at urgent care were starting to check me over more closely and asking questions about my well-being after stitching me up on two separate occasions for knife wounds.

I’d made quite a large batch of beef stew that night and divided it up between a few single serving containers to put in the freezer and a larger container to keep some for dinner the next night. Thankfully, there was just a little bit left in this bowl before I ham-fisted stew all over the cooktop.

Despite the messy kitchen episodes, it had been a decent day in other rooms of the house. I frequently drop my toothbrush as I’m brushing my teeth and fling toothpaste all over the mirror, counter, sink, my clothes, and my face. I usually drop the TV remote at least once a day, but had managed okay this day. However, after dinner I decided to do a little reading. I dropped the book not once, not twice, but three times.

I officially became old eight years ago when I noticed I had to take my glasses off to read. I do have bifocals, but I usually prefer to read without them. As a result, I take my glasses on and off several times during the day. I dropped these exactly five times during the course of the day, which was about 40% of the time I messed with them. Two of these were during the time I was reading.

Before I went to bed that night I helped Todd fold the laundry. My P.J. bottoms ended up on the floor two times before Todd grabbed them from my hands and folded them up and put them away. I was really getting tired by then, and I think he knew they would end up crumpled on the floor a couple more times, so he saved me the effort and did it himself.

The National Multiple Sclerosis Society http://www.nationalmssociety.org wrote the following for the first sentence describing MS Awareness Week 2019, “Every day, people living with MS do whatever it takes to move their lives forward despite the challenges.” Even though I’ve only been writing my blog for a little over a month, I’ve described my disease course and symptoms in several of my posts. Clumsiness and coordination problems are just a small part of my daily challenges. I encourage you to check out the National Multiple Sclerosis Society’s website this week and consider making a donation. Or, if you would rather wait, Todd will be riding for me in the MS 150 this fall. He will be signing up soon and you can donate to his team in my honor. They are so much closer to finding a cure now than when I was diagnosed 29 years ago, I think it is possible I will live to see them find out what causes it and possibly even a cure.