Sunday, November 6, 2016

Sitting - from M

I have never been a good sitter. More a squirmer, wiggler, fidgeter, pacer, putzer.  I never sat still. When I watched TV, I knitted or did crossword puzzles. When I went to the movies I sat on one leg, then the other, or left early.  When I watched my children play volleyball, I paced. When I waited for food at restaurants, I made origami frogs out of napkins. Now I spend 99% of my time sitting or lying down, interrupted only by moving between the two. I can't talk so I spend a lot of time looking and listening. For these I am grateful.

Enough of that.  Here's the good news. ALS sucks but it has also given me many gifts. Two of them are looking and listening - more. I have seen and heard things I probably never would have before ALS grounded me.

The path a breeze takes across a tree.
The path a butterfly takes when it's just playing.
The pattern branches and stems make when the wind blows.
Leaves can float upward.
How many bird voices I can hear.  I wish I knew who was singing. My father did.
The cars whooshing down the street sound like the ocean.
How nervous the wrens are and how chilled the cardinals are.
Leaf blowers are auditory bullies.
Walkers who hold hands talk more.
How much the sound of a little plane's motor changes on the short trip over my house.
The free fall journey a leaf makes on the way down.
The hummingbirds will come if I am very still. 
How many little flying things are in my yard.
The gurgle of the little pond fountain never repeats.
One dog barks, then two, then three.
The rare thud of a pine cone hitting the ground.
You can watch the sun go behind the tree with your eyes closed.


I wish I had discovered these earlier.

Wednesday, October 26, 2016

WORDS  (not funny) - by M

When I was a sophomore in college, I took a psychology course in summer school. One of those 200 students stuffed in a hot stadium seating old classroom at 8 am classes. The teacher was a young, very geeky, slightly too hairy visiting professor. He asked us to call him Paul. He managed to fascinate this group of unmotivated sleepy students - well at least one of us. When we came in to class he was usually sitting yogi style on the table at the front of the classroom with his too big Birkenstocks neatly placed on the floor in front of him. One morning he wasn't there. About the time we were deciding to bail for the coffee shop, he walked in the back of the room and said “Masturbation.  Repeat after me, masturbation". Confused and uncomfortable,we responded weakly. He continued his prompt maybe 20 times as he walked to his table while we responded with more confidence and volume with every repetition. When he got to his table and settled himself, he looked around the room and said "is anyone still uncomfortable saying or hearing the word “masturbation”?  Okay, now we can discuss it".

Harry Potter says, “a word you can't speak has power over you.” 

I'm fascinated by words. Phoebe thinks there are too many of them. I collect them. I think they are our most power weapon and ally. I am usually not afraid of them. Some are fun to say like falafel and onomatopoeia.  Some represent my answer to world peace - tolerance and kindness. There are words I could never hear again and be just fine - like ointment, gristle and panties. Words that make my heart hurt like cruelty and stupidity. Words that I don't use because they are too adult, too personal and too awkward like masturbation, intercourse and die.

Talking (typing) to our hospice social worker last week, I started a sentence with "After I die..."  It was one of those moments when multiple strong contradictory emotions and revelations all collide in your brain.  The strongest was the revelation that I had not used those words before. I didn't think I had been avoiding them but apparently I had. Anybody who has done their homework knows ALS has a 99% mortality rate. This is not news. So Paul and Harry Potter, I am using the words.

I am going to die. No more "when the time comes", or "at the end" or "after I'm gone".  I am going to die.  Maybe tomorrow if lightning strikes, maybe in 20 years if I'm in line for a miracle. The next feeling was the unexpected relief of having spoken the words. No more being politically correct with myself. No more dancing around the word because I don't want to upset anyone or make them uncomfortable.

Everyone's assignment now is to repeat the words 17 more times. Is anyone still uncomfortable saying or hearing "You are going to die?” 
Okay, now we can discuss it".


-M

Thursday, October 13, 2016

The elephant in the room

Man, we've neglected this thing a bit haven't we?? Whoops.

I felt the need to put some thoughts down tonight and, to be honest, there's only one person I really hope reads this post.

Momma, I love you. I cannot even begin to understand what must go on inside that amazing mind of yours. I'm sitting here with so much I want to say to you but I can't even get my head wrapped around my thoughts. Dad is going out of town this weekend and Phoebe and I are your substitute "caregivers". I really don't like that word. What I really want to say is that we're having a girls' weekend (with a husband or two and some children included). What I really want to say is that I'm spending the weekend with my mom. I don't want to say that I'm "taking care of my mom" this weekend. It makes it sound like a chore. Like a to do list item.

Mom, you are not a chore. You are not a to do list item. You are not a burden.

You, momma, are the woman who has taken care of me my entire life. You've loved me, supported me, picked me up, kicked my butt, encouraged me, praised me, comforted me, taught me, guided me, and stood by me through every up and down. There were seasons when I know it had to have been a struggle. I had some serious downs. The one thing I always knew I had though, even when I felt like I had nothing, I always knew I had you behind me.

I wish, oh how I wish, I didn't have to "take care" of you this weekend. I wish you could do all of these everyday tasks that we all take for granted by yourself. I wish that you didn't have to worry that your helplessness was going to make us sad. It's going to make us sad. There's just no getting around that. It's the elephant in the room. I'm sad. I'm angry. I'm scared. But, most of all, I am honored and grateful that you are still here for me to take care of. I'm grateful that I have the chance to love and support and care for you.

There is no greater gift from a parent to a child than their unconditional love and support. I'm grateful for it everyday and, I'm a better parent because of it. To be able to turn around as a child and give that back to you, because I want to, not because I have to... I just hope that you see and feel that same love and support that I have always felt from you.

I love you, momma, and I can't wait for this weekend!

io








Friday, August 5, 2016

Don't go chasing butterflies...

from Cat:

Mom took a nasty spill on Wednesday. She and her wheelchair went off of a curb and landed hard on the pavement. 7 stitches, 1 missing tooth, 3 broken teeth, 1 broken hand, and some hurt feelings later, she is home and doing as well as can be expected.


I was working when dad called to tell me that, while everyone was ok, he was on his way to the ER to meet mom and the ambulance because she had fallen at Lowe's. He told me that he had been in the store buying what has now become the most expensive basil plant ever. He turned around and mom wasn't there. She likes to pace in her wheelchair and she also likes to go fast. She has been known to pull a Houdini before so dad set off to find her. He told me that he had to look a few different places before finally going around a back corner and he saw her, and Amigo (the wheelchair), down on the pavement. Thanks to the help of some awesome Lowe's employees and Wake County EMS, he was able to get her and the chair up, get her into the ambulance and to the hospital where the staff there stitched her up and took great care of us all.




When I got to the hospital, mom gave me a funny look and said, "Did daddy tell you what I was doing?" I said that I thought she was trying to get around a display, over shot it, and her wheel slipped off the curb. She got this sheepish look on her face and shook her head. Then she looked at me with a smirk and said... "I was chasing a butterfly."

Say what??

Yep, she saw a butterfly and wanted to see what kind it was so she was following it when she ran off the curb. Then she told us that she didn't even know there was a curb there! Daddy said, "The big yellow stripe painted on the ground didn't give you a clue?" Mom kind of giggled and said, "I wasn't looking at the ground, I was looking up at the butterfly!"

Now, I tell you all of that so I can tell you this... after getting her home, washing her hair in the sink, and fixing her some soup, daddy put the whole day into amazing perspective. He said,

"You know what? At least you were out there chasing butterflies."

That statement struck me right in my heart. Yes, at least she was out there chasing butterflies. At least she was out there chasing after something that makes her smile.


ALS is a horrible disease. It can easily become as emotionally and psychologically debilitating as it is physically. My momma isn't going down like that. She has no control over what ALS does to her body but she is not letting it beat her spirit. She's out there looking up. And consistently beside her in that fight is my daddy - constantly supporting her, dancing with her, encouraging her, making her laugh, loving her, and taking care of her.




So, my blog title is a bit misleading because I mean the exact opposite. Go chase those butterflies. Find something that makes you happy or that brings joy to your life and you do it. And if you happen to fall off of a curb in the process, I pray that you have someone beside you who will feed you tomato soup while singing, "Good 'Fang', Good 'Fang'" to you... because that is life. That is living and that is loving.

and this is Fang...

oh man, she's gonna kill me! :)

Sunday, July 31, 2016

I had no idea...

From Catron:

The 1st annual ALS Soccer Shootout took place on Saturday, July 16. "I had no idea" was a running theme throughout the whole day. Actually, it started before the tournament day even got here. When mom found out the number of teams and the number of players that had signed up for her tournament (16 teams and over 200 players), she said, "I had no idea this many people would want to do this."


A few days before the tournament, Todd asked us if we would like an update on where we were financially... ummm, duh. I was going big and thinking an aggressive number like $8,000. Mom was thinking $4,000 and I think dad was in the $6,000 range. Todd then told us that we were currently at $13,400!!! This was before the day of raffle, before t-shirt sales, before day of donations. This was just donation and sponsorships up to that point. $13,400!! Mom said, "I had no idea that we could raise that much money, especially in our first year!".


Then, the day of the tournament arrived. Friends of mom and dad's from before they were married were sending in donations. Friends of ours were sending in donations. Friends from our childhood (I'm talking preschool and elementary school) were coming out to play in the tournament in mom's honor. If you weren't there, I don't know if words can describe the amount of love that was on that soccer field. It was visible. It was tangible. It was one of the most overwhelmingly powerful feelings I have ever experienced. And, throughout the day, mom kept saying, "I had no idea. I had no idea. I had no idea that this many people loved me this much."




She asked me to write this post because she said every time she tried to put into words what that day meant to her, "her head got all full of love stuff". 





The day after the tournament she sent the family a text saying, "I know you are all sore today but I feel stronger than I have in weeks!" To prove her point, when I went to their house later that day she could lift and move her right leg, move her right arm, and she was speaking better than I had heard her speak in several weeks! Those are things that she has not been able to do up until Saturday. And here she was, the day after the tournament, visibly stronger both mentally and physically. That was, in no doubt, thanks to the tremendous outpouring of love that was showered over her that day. I don't know what other words to use to express how grateful we are for all of your support and for all of your love. It worked!!  



and then, a few days later, even after a surgery...




Now, thanks to all of you who supported in person, in time, in donations, in spirit, in prayer... not only does she have an idea of how much she means to people, she is 100% aware and grateful of how much she is truly loved and supported by all of you. Once again, I'm left being only able to say, "thank you" and hoping that those 8 letters are able to convey the gratitude I feel for the true soul healing light you give me, you give her, you give us. 

Thank you.


Oh, and by the way, after the tournament, the total amount raised for the MB23 ALS Foundations was... over $20,000!!!! That is not a typo! It's a '2' and a '0' with a comma and 3 more '0's!!! You guys are amazing!!


Friday, June 24, 2016

Prayer.

from Marilyn -

A very special thing happened to me today. So special, it needs to be shared.

There is a person I have known, in a friendly professional way, for a while. I have always admired them for what they do, how they do it, their kindness to me, their commitment to me, their commitment to their family. A really good person. There is a fine line between friendly professional and friend and I've never known exactly how to cross that line.

I've always heard that prayer is a powerful thing and today I believe it more than I did yesterday.

My friend said "May I make a confession to you"?  (I'll admit, my mind did a long nanosecond search for what this meant while I tried to get my neck muscles to make my head nod yes.) They said prayer was important to them, they prayed often, they liked to pray for people and to pray with people but after my ALS diagnosis, they were overwhelmed and have not been praying for me. Would it be okay if they did now.

As my children have often said, and I think they are right, I am a very spiritual person. My heart, my faith and my soul's direction have never had an organized name though. I believe - no matter who asks me. I am honored when someone offers to pray for me or tells me their children's church group has added me to their prayer list. I believe in the power of prayer and the power the universe must feel when someone offers that strength to me. 

My friend held my hand and prayed. It was a powerful and honest prayer. And a great gift.

 I am fortunate to have friends who give me so many gifts:
-flowers, and fun, and food, and time...
... and prayer.

Wednesday, June 22, 2016

We're still here!!

From Cat:

Man, we are WAY overdue on a blog update so for those of you still sticking with us... thanks!!

In the craziness that has been the start of summer, I neglected to post about the Raleigh ALS walk that happened way back in April! Whoops! While I have some other things on my mind right this moment, I would be remiss if I didn't record what an amazing day that was.

As best we could tell, we had close to 50 wonderful friends come out to walk with us, love us, and support us. We raised over $10,000 for ALS!!! $10,000!!! That just blows my mind.

Mom was overwhelmed by all of the love and support that was rained down on her all day.
















I mean, just look at all of the love and joy in these pictures!! Who knew something as awful as ALS could still generate so much joy?

This is grace. This is comfort. This is hope.







I am grateful every day for the people in these pictures and the people who were walking with us in spirit.

ALS could have very easily ruined us by now. It is currently trying it's best to rob us of this joy and hope but, thanks to the support of amazing friends and family and a mom with a VERY healthy sense of humor, we are standing strong and saying, "Not today, ALS-hole... not today!!"

ALS-hole... now that's funny!


Thursday, May 5, 2016

"Firsts and Lasts". (Not funny)

From M:

I get so excited when someone says they have read our blog or I find a new comment.  Silly excited. What we hear most is how funny it is. I love that!! I love to make people laugh. But, the purpose of this blog was to let folks know the good and the no so good. I don't want to disappoint, so future blogs will come with the "not funny" warning when appropriate so you will know it's probably not going to be a knee slapper.

I post my "I'm Grateful For"s everyday (on Facebook) and it really makes me think - every day - about doing that. Being grateful. It also reminds me that there are many things I forgot to be grateful for but... now it's too late.

I tend to remember Firsts. The first time I drove a car, the first time I heard "You have ALS", the first time I ate an oyster, the first time I shaved my legs, the first time I saw Bill, the first time I saw my babies. Lasts, are a little trickier.  Sometimes we request Lasts like, please let that be the last time you ask me to "................  Sometimes we impulsively and naively self-impose Lasts, like that is the last time I go the mall on Christmas Eve, that's the last time I cut my own hair and that's the last time I will ever ever drink tequila. These are nice Lasts -they are reversible. Then there are the for-true ones like, that's the last time I will be a teenager, the last time I talked with my mother .....and that's the last time I watch "Fried a Green Tomatoes".  The saddest Lasts are the sneaky ones. The ones you don't know are for the last time... until after. It's too late to cherish them one more time.  I seem to be finding a lot of these lately.  Mostly, they are subtle things, things I didn't even know I had until they were gone.  Things I miss doing.  I'm going to start adding "I Miss"s to my daily posts. It is not intended to invite the "oh poor baby"s but to put some closure on them for me, share some of what ALS is about and maybe give you a chance to put them on your grateful list.

Here are a few things I miss:

Kicking a ball
Opening a jar
Talking on the phone
Wearing high heels
Being alone
Blowing up balloons
Crossing my legs without using my hands
Unlocking the front door
Crying (my throat closes up)
Putting on earrings
Lifting a gallon of milk
Writing
Walking alone
Talking
Picking up my Cole and Beckett

This ALS stuff is nasty business but it has helped me focus on how much I still have.

Sunday, April 24, 2016

This is for you, Marilyn!

from cat:

A few months ago my brother-in-law, Todd, sent me a text message saying that he needed to tell me something. Now, if you know the lengths he went to to propose to Phoebe, and the secrets that I had to keep for SO long, you know that I was on the edge of my seat.

I remember, I was sitting in the parking lot of the Office Max. I'm paraphrasing a bit but, here is what he said:

"Cat, this whole thing with your mom sucks. I know you're upset, Phoebe is upset, she cries sometimes and I honestly don't know what to do other than to hold her. I wish more than anything there was something I could do to make this better. I wasn't going to tell you about this until the walk in Charlotte but the guys and I were all talking and we figured we should probably bring at least one person in on this so you know what's going on. The guys and I have been trying to come up with something to do for your mom since she came out to support us at our soccer tournament in December. We've honestly been planning this since December. We just think your mom is so special, we want to show her how much we love her."

**It's me, Cat, now** I'm going to be completely honest here. At this point, I was 100% prepared for him to say that he and the guys were planning a flash dance for mom. It's just where my mind went. I imagined Todd, Lee, Tuttle, Stefano, Vance, and all of their other soccer playing buddies jumping up at a random event and busting into a very well choreographed dance. I was wrong... but I'm still holding out hope. 

Back to the story: Todd then tells me that he and his friends have planned a soccer tournament. Not just any soccer tournament but, an annual soccer tournament in mom's name. The proceeds to go to the MB23 ALS Foundation. Her foundation. All for her. 

I cried right there in the Office Max parking lot.

He brought Phoebe and I in on it after it was already done. Can I just say again that these are a bunch of guys who in all honesty have only known our mom for a few years?? Seriously?? **Heart melt**

They presented this whole thing to mom and dad after the Charlotte ALS walk. Just about everyone that had a hand in the planning of this came to Todd & Phoebe's house and we sat mom & dad down on the couch and played this...



I know I'm biased but, have you ever seen a more beautiful woman? That smile will light up my life forever. And the people in our lives who helped us make that video?? Are you kidding me? We had videos coming in even after this one had been put together. They're the best.

After we all dried our eyes, we put our ALS Soccer Shootout t-shirts that Todd's friends designed and made for us and watched the video again. Man, we've got some funny people in our lives!!


 


So, if you are free on July 16, we would love it if you'd come out to the ALS Soccer Shootout. There will be some great soccer to watch (Todd and most of his friends played in college and some played professionally), bounce houses, food trucks, and lots of other family fun. You can register your own team to play and, if you are a business and are interested in sponsoring this event, please click on the sponsor tab and let us know! If you are just a person but would still like to help, please click on the donate button at the top of the page. Every little bit helps!

We will continue to post information about this event as we get closer. Thank you in advance for your support and your love for our momma. We think she is the most wonderful person on earth and we hope you all get a chance to be touched by her amazing spirit.

To Todd and his friends who set this up - thank you for loving mom like your own. You mean the world to her and as she said the night you played this video for her, "If I could talk, I couldn't."

http://www.alssoccershootout.com

Monday, April 11, 2016

So much to do

From M:

So much good stuff is happening!  This weekend (4/9) we went to Charlotte to visit Phoebe and Todd and to participate in our first ALS walk as Team23+ (thanks to Catherine, one of Todd's soccer mom's, for signing everyone up!).  I had no idea what to expect but I truly didn't expect so many people to be there to walk behind my banner.


I was saying "hello" and "thank you so much for being here" over and over and gloriously over for an hour. They just kept coming. Phoebe and Todd have amazing friends. Some traveled from Asheville and Boone and Durham, some brought their spouses, their friends, they brought tiny babies, they brought dogs, there were a few amazing soccer players from the team Todd coaches and the team he plays with (more on these amazing men later), another precious friend brought doughnuts and huge red "2" and "3" balloons and one great friend of Phoebe's drove from outside of Asheville with her husband, 2 little kids and her brand new baby to walk with me. Amazing!  At one point during the walk, Phoebe and Catron ran me (in my temporary wheel chair, BluGo) ahead of my team and turned me around so I could see everyone.



I couldn't breathe for a second and my eyes started sweating. There were so many people!!!  A huge testament to the love Phoebe and Todd have pulled in to support us in this ALS journey.  It gives me real hope that awareness and funding for ALS are growing daily. I know my big red bubble of love and support is so much bigger than I could ever imagine. I love every single one of the people who were there on Saturday, in person and in spirit. Thank you to the moon!

The big red bubble of love.



EXCITING NEWS!!

From Cat:

This post is so overdue it’s not even funny. We have SO many things to be excited about right now but I’m just going to lead off with 2 of them! Last Tuesday I went with mom and dad to the Duke ALS Clinic for a few hours. Mom always meets with each specialist on her clinic day but she wasn’t scheduled to meet with Dr. Bedlack this time. Dad mentioned that if Dr. B had time to stick his head in that’d be great since I was there and hadn’t met him. Well, Dr. Bedlack didn’t stick his head in, he came in and sat down and talked with us. It was not at all like any sit down doctor discussion I’ve ever been a part of. I seriously thought we were just a bunch of friends sitting around having a few drinks and talking about the latest happenings in the world of ALS. He’s amazing to listen to and you can tell within minutes that he has truly dedicated his life to finding a cure for ALS.

He told us that there were 3 trials currently accepting patients and that he was really excited about all of them. Study #1 – mom didn’t qualify for due to another medication she is on. Study #2 – we really had hoped mom could get on but her respiratory levels weren’t high enough to qualify. That one was a bummer. Then he told us about this Lunasin study that just opened up; it’s actually one of his studies that has come to fruition thanks to his ALSUntangled program. If you haven’t looked into that, you should (but you’ll need to know how to work “the Twitter” to get the most information from it). He described ALSUntangled as the X Files of ALS. Again, how perfect could this guy be for my momma?!? Anywho… Lunasin is a peptide found in soy and its name was chosen from the Filipino word lunas, which means “cure”.  Ummm, yes please. 

You can read more about the study here but, basically, there are thoughts that Lunasin could slow the progression of ALS. Ummm, yes, please again!

I’m totally skipping ahead in the actual progression of the day but… later that evening, mom let us know that she qualified for the Lunasin study!! She’s in it and she’s been rocking it since last Wednesday. She has to drink 2 “milkshakes” every day but they taste pretty awful. Ok, they are gross but she is handling it like a champ and following it with chasers like she’s back in college. Go momma!! We’ll be sure to keep you posted on how it’s going.

In talking about the study, Dr. Bedlack started talking about the ALS reversals that he had discovered and we told him that mom’s “Team 23+” had turned into a full-fledged team – not just a t-shirt that she wore to her first appointment… and then he dropped the bombshell and our 2nd thing to be excited about...

HE’S FOUND #23 AND POSSIBLY #24!!!! (As in, a 23rd and possibly a 24th person who have had significant improvement/reversals in their ALS symptoms!!!)



This is what Team23+ is. This is the whole reason we have the “+” at the end. Mom’s goal and desire for Team 23+ is to raise awareness and to support ALS research in the hopes of finding more cases of ALS reversals. Of course, we all want her to be one of those reversal cases and that will always be our end goal. The point right now is, let’s keep this number going up. The more reversals that are discovered, the more medical files Dr. Bedlack can study, the more opportunities to find clues for a cure.

Such a wonderful way to lead up to our first Walk to Defeat ALS which was in Charlotte this past weekend. The weekend was beyond incredible and therefore deserves its own post, or three.


Thanks for keeping up with us and sending your positive thoughts mom’s way. She is definitely feeling the love and so are we. You guys are the coolest. 

Monday, April 4, 2016

Rica/Rico

from M:
Our house is wrapped around a most gentle and peaceful little garden and in the little garden is a little "water feature" - we call it the pond.  Last summer a little frog moved in.  We have been entertained and delighted by this bullfrog beyond reason.  We named her Frederica.  She likes to sit on the ledge of the pond and do what frogs do all day. Nothing. Cole and Beckett (precious grandsons) always look for her when they visit. If she's there, they shriek "Rica's out!" We watched her grow to be a big fat beautiful bullfrog. Sometime last fall, I decided Rica was actually Rico - a male. I can't remember why I decided this. Everybody adjusted well to the news. Rico did nothing. During the winter, he hibernated in the bottom of the pond and somehow managed to survive the cold. I worried about him daily. Then one day the daffodils and Rico announced spring. There he was, a little skinnier than before, sitting in the summer doing what he does - nothing.     
Bill got a new camera for Christmas and has now photographed Rico hundreds of times. Really. I was admiring some of the pictures, went to trusted Google, and discovered - Rico really is Rica. A female. We have photographic evidence.  Again we adjusted the vowel at the end of her name.  No problem.  Rica did nothing. But two weeks ago I realized we hadn't seen her for a couple of days. By the weekend I was really worried. I missed that silly frog. (Here comes the good part.)

Then miraculously, one week later, Rica returned. Bill said she finally did something. She was conflicted, had socially inflicted gender identity issues and had gone to Virginia to pee. 




Monday, March 28, 2016

Rocks

I have rocks in my head. Long suspected but now proven. You do too.  But, mine were loose.

My rapid interaction with the floor a couple of weeks ago, left me with Benign Paroximal Positional Vertigo. That's a lot of letters for slight dizziness when getting out of bed.  Not a big deal but a little unsettling when the ALS gift of precarious balance becomes weightless frolic when getting up in the middle of the night.

My well documented physical therapist nodded knowingly and said "sit right here". Rob and I are learning about this ALS thing but he is a dizzy expert.  He put a mask on my head that blocked all light from my eyes and had a camera that showed on a monitor what my eyes were doing. When he turned my head to the sides, my eyes moved back and forth quickly. "Aha" says Rob!  "I can probably fix that."

Here's the quick non-scientific story. There is a little pouch in our inner ear that has little tiny rocks in it.  They are supposed to stay there. Apparently when I hit the floor, it shook some of my rocks loose and they went rogue, wandering around the tubes in my ear creating minor havoc.  When I changed position dramatically, like sitting up in bed, the little rocks started rolling and told my brain that I was doing the twirly dance when actually I was innocently sitting on the side of the bed prayerfully gripping the sheet. Rob's solution - put them back where they belong. He knows how to do this. Have you ever played with one of those infuriating marble maze things where you have to roll the marble thru a maze with holes in it by turning knobs on the side. That's what he did with my head.  He said to just relax (I trust him) and proceeded to, with confident gusto, move my head around to send the rocks home. There are two places the rocks can go and of course mine were in the harder place to correct, so I knew it might take a couple of goes at this maze. I left with instructions to not move my head up or down for 24 hours. (Try it.). Got up in the middle of the night with my brain dancing to some cosmic ditty. Drat. Got up in the morning. No twirling!  My rocks were back!  When I went back to PT, Rob checked my eyes again. No jiggle. He was pleased too.






I still have rocks in my head, but now we are dancing together.