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.

Under Pressure

From Catron:

The week between mom finding out she had a motor-neuron disease and then actually being diagnosed with ALS was probably one of the hardest weeks, at least for me. There was this big, dark, and ridiculously scary cloud on the horizon and while I sort of knew what it would bring, I didn’t know. That week fell over Thanksgiving so we were, thankfully, able to make it through that week with each other and with family. That also made it harder though because you can always (at least you hope you can always) be your true self with family. That made for a weekend where laughter and tears both popped up regularly.

There are a lot of crappy things about ALS and a lot of unfair things. One of the most unfair things in mom’s progression is that, even before she was officially diagnosed, she couldn’t cry. When you cry, your throat constricts and that’s why some of us talk a little higher when upset. For mom, ALS is already constricting those muscles a bit so when she gets upset, they constrict even more and make it hard for her to breathe which causes her to feel panicky, which makes it even harder to breathe, etc.

Can you imagine, being faced with a possible ALS diagnosis and dealing with all of the symptoms she has and not being able to cry about it? It was and is absolutely heartbreaking.

Laughing poses the same challenges as crying. Her throat gets tighter and it’s harder for her to bring in air. So, with that being said, we’ve decided to stop laughing.

Just kidding. While it is as hard for her to laugh as it is to cry, she says that laughing is way more fun!

The snicks. Do you know what they are? They are like little laugh seeds that bloom best under compression. They are planted by a funny noise, or a funny thought, or a friend whispering an inside joke at the most inopportune time and they sit there, knowing that they shouldn’t bloom yet, knowing that the preacher is in the middle of his sermon or the teacher is going through questions for the upcoming quiz. They sit there gaining strength. You take a deep but shaky breath. You think you’ve gotten them under control. But then they start to bloom with a little laugh that sneaks through and that’s all it takes to open the flood gates. Before you know it, you’re in tears on the floor all because of that little laugh seed that has now exploded. The snicks.

Well, mom got the snicks last week after PT and I honestly have not laughed that hard in a very long time. And I laugh a LOT! This bout of the snicks was brought on by something in mom’s head that just made her do a little giggle, compose herself, little giggle, compose herself, bigger giggle, BOOM! What happened after that is what almost gave me a panic attack because I couldn’t see an end to it. I was going to spend the rest of my life laughing as hard as I’ve ever laugh and I was panicking! 

Because mom’s throat is tighter, when she is laughing (or crying) and tries to bring air in quickly, she honks, like a goose. A cute goose if you ask me but a goose none the less. We know about the honking. It’s funny, but it’s not new. What is new is this higher pitched laugh that I have never heard her make before. It comes out of nowhere and seems to take on a life of its own. Here’s proof and if you aren’t laughing by the end of this, well then, I’m sorry.

So, here’s to laughing so hard your nose runs! 

By the way, this video was taken at least 5 minutes into this full blown laugh attack and the laughing went on for at least another 10 minutes. Now you can understand my panic! 

Oh, and please disregard mom's scarf bow or ascot, if you will. She had positional vertigo due to her fall and she was not supposed to look down (or up) so the bow helped her remember. It also, in my opinion, really makes this video pop. 

I am grateful for dceaglecam.eagles.com

Based on input from my team of social media advisers, the "I am grateful for"s are moving to Facebook page      Team23+

I am grateful for clean hair.

Why Team23+ ?

from Bill-

The night before our first Duke ALS clinic visit, in late November, Marilyn decided to read up on Dr. Bedlack and his team. (It's always good to know who you're going to be hanging with.)  She found an article from the N&O that mentioned the fact that Dr. Bedlack had looked into hundreds and hundreds of "claims" of a cure or reversal of ALS symptoms.  It seems he and a team of researchers from around the world have carefully investigated these claims and actually found 22 cases of a reversal of ALS.  While the scientific reasons are not known (yet),  it evidently had an impact on Marilyn... Despite the fact that she had recently received the worst diagnosis she could possibly imagine, that she was afflicted with the fatal disease that "other" people have.... she showed her true self... She got to work, in a crafty sort of way.

After 10 minutes at the computer and a few minutes with an iron, she had created her "wardrobe" for the next day's appointment. It really wasn't fancy- but it said so much
It was simply a T-shirt with an iron-on logo she had made. 
No, it did not say,  "ALS Sucks", or  "I'd Rather Have Something Else"....(though I like those ideas),
it actually was just a simple white t-shirt...
and ironed on the front...
was the number 23.

I wish everyone could have witnessed that moment.... among all the other feelings and emotions raging around us, with fact that this disease is devastating and fatal... SHE focused on the fact that there needs to be hope...
In Marilyn's mind, if there are 22 then someday THERE WILL BE a number 23.  

And then... there will be more.
 That's where the + comes in.

Here's to a simple yet powerful message.   23+



M and Dr. B

I am grateful for my kitties.

Ernestine (Ernie) - our polydactyl cat (meaning she has extra toes) named after Ernest Hemingway

Isabella (Izzy) - our yoga instructor kitty

No Elevator (or The Importance of Word Choices)

My name is Todd, and I am Phoebe's husband. By the Blankinship/Horton gang, I've answered to Tahhh!!! (Beckett), Babe (Phoebe), and even Scott (Marilyn). For a while there Marilyn thought my parents had named me the wrong name and that it should be Scott. When she and Bill met my parents for the first time, Marilyn even said to my mom, "We love Scott!" - but that's a whole other blog post in itself. 

I'm normally good for a few laughs at my own expense and this story is no different. I've been told that this story has caused embarrassment (mainly from myself), milk shot out of nostrils, and tears from laughing so hard.  We will see how this translates through a blog post.  Here we go....

Short story long....Phoebe and I were in town one weekend visiting Bill and Marilyn. The four of us decided we wanted to go out to eat. (Marilyn is probably reading this right now thinking...."Ok Todd, how about we go back to that Scott post!!")

There was a place in downtown Raleigh that they had been to before, but were hesitant about going to now because it has a long steep staircase in the front. I said, "Let's go there! I'll carry you up the steps. Piggy back, bridal carry, fireman carry over the shoulder - you tell me what you want and we'll make it happen." So we get in the car and go. There's no parking on the street. Bill pulls up curb side and I hop out to see what the wait is for four. I open the door to the restaurant and look up. HOLY stairs!! I'm talking, you get to the top of the stairs and you clear your throat as you try and play off the fact that you are out of breath. On top of that, once you get to the top step you are IN the middle of the restaurant. Everyone is sitting at their tables eating and looking at you thinking, yup, he just cleared his throat. He's out of breathe. I digress.

The hostess says they can seat us now. I go back down the stairs and let them know. Phoebe and Marilyn get out of the car and Bill drives away to find a place to park. We open the door and see the stairs again. Marilyn says, "Todd we do not have to do this." (I must have had sweat marks coming through the back of my shirt from my last expedition on the stairs or something.) I said, "Oh, we're gonna do this!" She chose piggy back. I squatted all the way down to the ground to make it easy for her to climb on my back. She was on. We were already laughing. Well, Phoebe and Marilyn were. I was just thinking to myself, how in the hell am I'm going to stand up now. That thought came after the, why in the hell does this place not have an elevator thought. 

As I stood up, my legs shook a bit, and my knees buckled into place. Picture a new born colt trying to stand for this first time. (If you can't get the visual, YouTube this. It's spot on!) I was heading for a face plant on the stairs as I reached one arm out to catch myself and she grabbed the railing. That's when I started laughing as well thinking if anyone is watching this I can only imagine what they're thinking.  Phoebe is behind us laughing so hard she couldn't even think to record it. Marilyn puts her arms around my neck and we make it up the stairs. Reminder....you are in the middle of the restaurant at the top of the stairs. Everyone is eating and we pop out. Me carrying Marilyn piggy back and us laughing hysterically. We definitely got everyone's attention and some strange looks. But we gather ourselves and follow the hostess to our table.

-At this point in the story everyone usually cuts us off and says, "there was an elevator!"
Nope.
No elevator.

So looking over the menus, we begin to discuss how to get her down the stairs afterwards, without hesitation I said....well, I MEANT to say...or I should have said, "You can go down with me."  BUT...  I actually used the word "on" instead of "with".  

LONG PAUSE----

Seconds later, as we all realize what I had just said, I mumble, "well that sounded terrible." That's when the laughing and crying started again. We couldn't stop. Then, Bill shows up and wonders why we are all beet red and crying.   I couldn't believe what I had said. Not something you ever imagine yourself saying to your mother-in-law.  We still laugh about this story today like it just happened. And we may not be able to go back to The Rockford ever again.

-----------

I didn't want to take too much time to write on the sad stuff so I'll just say this....I heard a quote that "flowers can bloom in the dark." That's all I think about when trying to stay positive. Here's to more laughs with an endlessly blooming flower!

I am grateful for cheese straws

Plod step sway

From M:

One of our goals in this ALS journey is to find more joy, happiness and hope than gloom, loss and sadness - every day.  So far we've accomplished the goal easily. I've always found joy in leaves and babies and cotton candy and bugs and regular stuff.  With my friends and family, including my two cosmically precious grandchildren, my life is bursting with happiness.  Knowing I'm a partner in the Duke ALS Clinic gives me hope.

One of my every day goals forever has been to learn something new every day. Thank you Google for making this easy.  I've recently amended that goal to learning something new about me every day. That's not so easy.  One of the first things I learned is I am way too concerned about how I look to other people.  All of this seriousness brings me to the subject of dance.

Bill is a good dancer. Catron and Phoebe are really good dancers. I am not a good dancer. I am uncoordinated. This I already knew about myself. I have never enjoyed dancing because I knew everyone was watching and thinking how unfortunate my display of bumps and twirls and jazz hands were. Well, I am over that!  Bill and I dance everyday now. That is joy and happiness. I'm even more uncoordinated now and I am fabulous!

Last night Bill was walking down the hall when I said "Let's dance".  He of course stopped what he was doing, turned around and danced with me. We were doing the slow barely post-pubescent middle school plod foot sway, dancing to the music in Bill's head. Suddenly he stopped dancing and whispered in my ear "I have to pee so bad I may wet your pants".  I laughed so hard I just about did it for him.

Check.

A noodle and a bowling ball

From M:

I had an unintentional and unexpected rapid encounter with the floor last night and put a big ole goose egg on my big ole head. Floor is fine as am I. Considering my delicate condition, a bit of headache and vertigo, we visited our brilliant friend Jim the doctor.  He said I had not concussed myself. I was lucky because I hit the part of my skull that is the thickest. Mine thicker than most. He really said that. He is a friend.

Falling is a scary thing and while it happens very quickly, for the fallee, it is a slow motion combination of "oh shit" and optimism - as in maybe maybe maybe I can save this.  In cartoons, that's when the lead character does the yaba-yaba-yaba dance.  During my Gone With the Wind length fall, I had time to observe exactly how my newly noncompliant body was reacting in response to the law of gravity.  Imagine a standing linguini noodle - al dente- with a silver and purple swirly bowling ball precariously balanced on the top. Then imagine a "a sweep of easy wind" (thanks Robert Frost) and what do you think lands first. My thicker than most noggin.

Goose egg is gone as is the floor cloth that was the catalyst for this event. The only remaining scar is the insult to my pride and the nick in my confidence.  Fortunately Bill is following 12" behind me "just in case".  All is well.

I am grateful for my family.

From M:

I want to start posting something that I am grateful for every day. These will be in no particular order.

Today I am grateful for my family.

Boys In Cullottes

From M:

I like volleyball and soccer and football and curling in that order and the rest fall into the "other sports" category.  I'm not a big basketball fan. This time of year the TV is given shrine designation by Bill as a vessel for "other sports".  The only fun part of this NCAA season for me is the annual extended Blankinship family ESPN bracket competition.  My chances of choosing wisely based on knowledge is zip so I have always adopted unique methods of picking my picks. One year I used a crystal pendulum. Once I flipped a coin. Let Cole pick. Best costumes. Coach with the most hair. Etc.  All have delivered average to dreadful results.

My brilliantly funny and normally non-judgmental nephew Joseph, is our group Commissioner and recently sent out this call to action email clearly disrespecting my technique:
"It’s that time of year again folks. Time to see who can put aside they’re mascot prejudices, uniform color scheme, academic standards or embrace them all if that’s your kinda thing to decide what team will win that trophy that somehow hasn’t been named after someone.

He thought my response was funny and should be printed on something so I'm printing it on this blog.
My response: "I see the likelihood of one cluster of shiny evolution-justifying illustrated men in culottes with runway hair being better than another at slamming the money ball through the hoop based on factual analysis as being no more of a predictor of outcome than the pleasantness of their costumes.  Don't judge my methods."

I have a new method this year based on the number of the letters A L and S in the school name. (I only cheated once and that was deciding Austin Peavy probably wouldn't thump Kansas in the first round.). I'll report later if this is my year.

Page 3

from M:

This is my first blog post ever and I am a little nervous.  I have been putting it off because I kept thinking the first one should be something grand and a broad dramatic heartfelt narrative about my current place in the universe.  Not about the new renters in our orange birdhouse. When I get a new journal, or list pad or a wonderful spiral notebook, I always leave the first 2 pages blank because I know I will need to go back and add that beginning masterpiece.  It never happens so don’t wait for it.  I’m just going to start on Page 3.

Yesterday my brother Dail, who is a pretty famous architect, a wizardly woodworker and the best person I know, came to my house and brought wooden gifts he made for me.  I’ll show pictures of the beautiful “chair rail” another time but first "the steps".

I love our bed.  It has four very skinny posts that go almost to the ceiling and on each of them sits a little hand decorated bird house.  It is very high. 

When I slide out of bed in the morning, by the time my feet hit the ground,  I'm standing up.  So efficient and helpful for those of us who have a little trouble getting our somewhat uncooperative bodies out of bed. Not so much on the getting in the bed part.  In my preALS days, I would do a somewhat awkward one legged jump but that’s way beyond awkward now so I got the wooden “stoof” we used to help little ones reach the sink.  Kinda worked but it was equal to 2 steps high so getting on the stoof was about as hard as getting in the bed.  I refused to cut the legs off my princess bed!  2 weeks ago Dail and sister-in-law Artie took us to their glorious mountain house, and while sipping combustibles (Dail’s word for bourbon) in front of a fire, Bill and I described the previously unconsidered mobility challenges confronting a person with ALS - like getting into bed.  Dail suddenly smiled big and said “I can help. I can build steps. That’s easy.” (I don't think building steps could possibly be easy.) “That’s what I love to do.  Cut wood up and put it back together!”  And he did. These steps are perfect. I can get into bed with no fear, no gymnastics, no sweat and Bill doesn't look terrified that he is going to either catch me or pick me up off the floor. Dail does something he loves to do - wood - for somebody he loves - me - and I get a solution to a problem - bed landing - made by somebody I love - him.  How perfect is that!


There, I did it.  Page 3.

Sock Wars

We had a very successful trip to PT yesterday! Mom made some definite progress with her shoulder range of motion and that was a big victory.

I want to say a little something about Rob, mom's main therapist and the one I threatened to punch in the neck meat in the previous post. He's fantastic. Mom started going to him before she was diagnosed with ALS. When she told him of her diagnosis, he was very honest with her and told her that he had never worked with someone with ALS. They decided together that she would continue to see him and mom brings him info from the ALS clinic and he does a ton of research on his own. There they go again thinking about mom when they don't necessarily have to. I'm a fan.

The thing about Rob that works so well for mom is that he tells it like it is. On Tuesday when he was working on her shoulder she said, "It's not getting better is it?" Because I'm a pleaser, I would have immediately told her, "Sure it is, it's not 100% yet but we're getting there" even though that wouldn't have been true. When she asked Rob on Tuesday he said, "No, it's not."

When they did her range of motion tests yesterday I could tell by her face that she thought she had done better. She looked at Rob and said, "Did it get a little better?" and Rob said, "Yes, last time your limit was here, and today it is here. That's good." It wasn't fireworks and champagne but you wouldn't have known it looking at mom's face. She was thrilled and encouraged. In the car on the way home she said, "The best thing about Rob is that when he tells me that something is good or better, I absolutely believe him." Boom - Rob for the win!

Wyatt joined us for the therapy session this time and he even jumped in on the sock wars! Here we are rocking our socks:

Rob also participated in the sock war but I wasn't able to get a picture of his socks. They were awesome! Polar bears having a snowball fight in a blizzard! I searched the internet to find a picture of them but was only able to locate one on a vintage sock website: 

See, polar bears having a snowball fight in a blizzard. :) Once again, Rob for the win!

If you're planning to walk with us at either the Charlotte or the Raleigh ALS walk, be sure to wear your craziest socks!

Happy Saturday, everyone.

Holding Feet

Dad had a lunch appointment yesterday so I got to take mom to her physical therapy appointment. I didn't know what to expect at this appointment. Would it mimic the PT sessions I had when I sprained an ankle where they made me hop on that poor ankle until tears sprang out of my eyes? Would it be more of a therapeutic massage type session? Would it point out to me all of the things that she is losing the ability to do? Would it hurt her? Would I be able to handle it? I'm not going to lie, I was anxious and emotional before we even got there.

When we got there, her therapist pointed to his watch letting us know that we were 1 minute late - mom blamed it on her new driver (me). They joke - this is good I thought. Then we went into the office and I learned that they always have a sock war on mom's therapy days. She had mentioned this war but I thought it was for all of the patients. Nope, it's her. One of the therapists was in flats with no socks and she was in disbelief when she saw mom. "Oh no!!! I thought you were coming tomorrow!!" she said. Then she turned to another trainer, "Julia! I thought you said she was coming tomorrow!" Julia said, "No, you asked me and I told you Tuesday." This banter went on and on and it was so touching to me that not only do they participate in sock wars with mom but they think about her and when she's coming in. They think about her when they don't have to. It warmed my heart.

Then the therapy began. It was a lot of stretching and focusing on her right leg (Chester, the bad one) and right ankle. There were moments when I could tell it was uncomfortable for her. That was hard. Then he started working on her right shoulder. That is the arm she is having the most trouble moving and because of that, she has started to develop a locked shoulder. He really had to get in there to work on the shoulder and it really hurt her. I could tell because she smiled. She and Phoebe both smile when something really, really hurts. Then she grimaced and I almost punched the therapist right in the neck meat. I didn't know what to do. Do I tell him to stop? Do I ask her if she's ok when I can tell that she's hurting? Do I ask to see his credentials? Do I stand back and let him do the job that I know he knows how to do? How do I support my mom and let her know that I'm there without interfering? So, I held her foot. That's when the tears came.

When I was in elementary school, I had to have a CAT scan or MRI, I can't remember which. They thought there was something funky going on behind my eye and needed a closer look. My mom was with me through every bit of that and when they took me back for the scan, mom said she was going with me. They said that usually parents wait in the observation room but, not mine. She took off everything that was metal, including her glasses, and sat in that room for over an hour and held my foot. There was nothing she could do for me while I was in that tube and she couldn't talk to me because I couldn't hear her... so she held my foot. She held my foot so I would know that she was there. She sat there with no glasses on, no phone, no book, nothing but her love for me and my foot. So I stood through the rest of that therapy session and held her foot. I held her foot so she would know that I was there and that I love her beyond the beyond.

Here's to holding feet.

-Cat