Surprise

I mentioned the PLM site recently. Imagine my surprise when I looked at the forum posts for this evening and found this.

I've reached out to a few of these people, recognize so many of their faces. I wish I didn't belong to this club, but I do. And a finer group of people you'd be hard pressed to find. The messages they write back and forth, the support they offer, some of them only able to write by virtue of their eyes. We should all strive for such grace, dignity and strength. I hope I live up to the standard.

Good weekend and all my love.

PLM

I belong to a site called Patients Like Me. It's a great site, full of valuable info (like the post from mrclean), where PALS can record their progression and reach out to other patients like them. Like us. Like we? Whatever.

So I had a ping this morning from Silverage (my moniker is iamarunner). He saw I'd begun taking lithium and asked if I'd had any side effects or had noticed any improvement. First response: no side effects. The introduction of lithium into my system has been seamless. Second response: No improvement that I had noticed but I've only been taking it for a month.

But as I thought about it more, especially this evening while my right hand and fingers were twitching away, it occurred to me my LEFT arm seems to be twitching LESS. I'm not saying it's not twitching at all, because I still see it in the mirror, but the maddeningly crazy twitches have decreased to a point where I don't notice them--they've "softened," if that makes any sense.

Is that improvement?

PhoToz

Finally, a few pictures from the WV weekend.


Avec Jenny et La Pouffe


Becky et Kaia


Avec C Claire


La Pouffe, still in the cage. It did NOT diminish the volume of The Bark, however.

Heat

I hate heat. Heat hates me. It is my Achilles heel.

My run this evening sucked.

Hills

I almost forgot!

I ran yesterday morning, from my SIL's house to "the four lane" via the Woodridge pond and St. Brendan's. It was cold, so cold I wished I'd brought my gloves. I headed out, going down the hill toward the entrance to the development. Along the way I passed the pond and noticed there were several benches. I thought it might be a nice place to stop on the way back.

So, West VA being what it is, I ran up hills and ran down hills in the cold morning air, enjoying the quiet and the sights the four lane had to offer. I headed back and ran into St. Brendan's and the adjacent cemetery, headed out toward the development and up the hill toward the pond. When I got there I decided I would stop so I headed over to the first bench. It was quiet, there were some birds making their little noises, but otherwise it was still. There was mist rising off the pond, and I could see individual streams of mist floating up in the air. Then I realized there was steam coming from ME, too. I had to laugh because, if you remember the "I felt like a deer" story, all I could think was "I am a pond!" I'm such a goof.

So I sat there for a while longer, thinking of ponds and mist and life and all the things we encounter in our lives...for a brief moment I was melancholy but, just like the hills I'd just run, I know there's a down hill after the up hill. And I got up and ran up the hill back to the house.

There's No Place Like Home

Just back from a visit to family in wild, wonderful West Virginia. Where gas is $3.99 AT A MINIMUM and, at least at my nephew's house, there is no internet. NO INTERNET. There is hardly cell phone reception. All that notwithstanding, it was a nice visit and I got to see the great-nephews and great-niece; the nephews and their wives, the niece, the sister in law, and assorted others. All my daughters were present and accounted for, and I received many compliments on how lovely they are. Pictures to follow soon!

I paid $3.79 for gas when I got home. This time I was grateful. When I filled up, I needed 12.72 gallons. My car has a 13 gallon tank. I was MORE grateful for my little hybrid, which averaged about 50mpg for the tank.

Laundry calls. Love to all.

Start of the Long Weekend...

Did a solid run with Lynne this morning. Not quite the 90 minutes we'd originally planned but a good buck twenty, so I'm pleased. No stumbles. It helps that, for the first time in a long time, we are actually experiencing a spring and the mornings are still cool.

Off to WV later this morning, after my car is repaired. Naturally, having paid it off and looking forward to a month without a car payment, I need an 02 converter (whatever the fuck THAT is) that, with parts and labor, come to just under $600. Groan!

Anyway, looks like it's going to be a beautiful day. Aren't they all?

The Gift That is This Day

Lovely day. Excellent PT session with Mike, who taught me a good and effective way to stretch the neck muscles that cause me so much distress. He also worked on the shoulder and some range of motion, particularly on the right. I am his first ALS patient (even though I have dismissed Louise, I still have some of her baggage). He was a bit hesitant at first, over the phone, but once we met his concerns disappeared.

Commencing a PT regimen is timely. I refer to this post from the Patients Like Me website, posted by mrclean (whose onset and dx are similar to mine). My lithium level at last check was .47 (getting another report next week); my Rilutek dosage is 100mg per day, and now the PT 2x week. I am hopeful all these combined will keep Louise at bay. (You should check out mrclean's profile--just click on his picture.)

(A note, just for the record. While walking in Target today, I stumbled over my left foot. It is nothing except my stupid size 11 foot and shoe being big and awkward, but (as I told a friend afterward) everything is magnified and I am hypervigilant in noticing things. Example: the hoarseness. My sister commented today she thought I sounded better. And I do. Why? Because it was likely pollen AND because, as I will continue to SHOUT TO THE WORLD, Louise has been kicked out.)

Matt, so benevolent, got pizza for the staff today and authorized an early release. It still took me a long time to get home, but at least I got here earlier! And the day is beautiful and it's quiet and I feel fabulous. Utterly, totally, incredibly fabulous.

I think I will take my fabulous self and my fabulous book out in the fabulous sun and do some fabulous relaxin'.

I hope you all know just how fabulous I think you are and how deeply I care for you.

Appalling

I paid $3.79 for gas tonight. Disgusting.

My Decision

I ran 6.5 this morning and felt strong. It helps that I was angry about the situation Kendall is in at work--that fueled at least 6 of the 6.5! Used to be that an "H" story would make Lynne have to work hard to stay with me. Ah, those were the days. I wish I could get that running back, but we can leave H right where he is.

So I've made a decision not to be sick anymore. I'm sending Louise on her way and good riddance to her. Call me nuts, but I just decided to reject this idiot disease. I may not get any better, my hand and arm may stay at this level of weakness, but there will be no further deterioration. I'm done and that's that.

So there.

Mid Week Ramble

Ted Kennedy has a malignant brain tumor--a glioma?--and his prospects aren't good. He was seen leaving the hospital today, smiling, but knowing what is in store. I wonder if it's really registered with him. I wonder if the radiation and chemo will make a difference.

I'm still hoarse. Sometimes very noticeably, sometimes not so much. But hoarse.

On a different topic, I submitted my self assessment for my first TIS evaluation. Oh how I stressed over it; it makes me so uncomfortable putting down all the things I've done, because it's just STUFF. Not important. Just what I do. But if I step back and look impartially at what I do and how I work within this microcosm, I guess it does matter. Very frankly, I don't know who did all that I do before I got there. I discovered today an expensive error that wouldn't have occurred on my watch, but it happened before I assumed the role. Anyway, I'm half anxious, half eager to get the executive feedback. And I hope I get a big fat raise--I haven't had one for three years!

And a mental housecleaning topic. I have a very bad habit of thinking about people I've known over the years and analyzing the relationships. This doesn't just happen occasionally, it happens almost daily. While I'm driving, or running, or lying in bed getting ready to sleep; their names float through my mind like a laundry list. People who have hurt or disappointed me; people who have, for whatever reason, slipped away from me. I guess it's because these relationships are unresolved, at least in my head. I don't know. But it occurred to me today I do it so frequently that it's got to be unhealthy. So I have resolved to be very aware and to redirect my thoughts to more interesting, more productive areas.

And finally, the last of today's ramble. There are lots of people praying for me. They tell me to my face, in emails, in cards. I pray/send positive energy thoughts to lots of people, too. I thought today (sounds like I did a lot of thinking today) that I would try to list all those people who are the recipients of my prayers and good thoughts. Like the list of unresolved relationships that goes through my mind, they are in my thoughts as much, and actually more. They are like the twitches--ever present.

Okay, must go. Errands to run. LOVE WITH ALL MY HEART.

Carrots

Today was interesting. Met with a physical therapist because Dr Bayat had--in January!!--given me a prescription for a PT assessment for neck pain. My objective was to get some professional deep tissue massage in my neck, which ALWAYS bears any stress I am experiencing. I guess I've been under a little bit these last few months. Anyway, the therapist is going to work on the stress in the neck, as well as work with me on stretching exercises and some motion techniques. He suggested I get out of bed using a "log roll" technique, which doesn't put any stress on the neck or shoulders. Several of the other slow progressers I read about and correspond with use PT as part of their regimen, so I'll follow suit. Why not?

I also had a nice visit from my Jenny. I'd called her because I needed help cutting carrots. I like to munch on them as a quick snack but cutting them is too difficult for me. The right hand can't and if I try to do it with my left I am clumsy and awkward and run the risk of hurting myself. So my sweet daughter came over and cut a million carrots for me. While she did this I got to visit with The Puffe! The silly baby is out of the crate now but must still wear her little cone so she won't sully her still-healing little knees. When I am holding her and she looks up at me, it's like she's a little Bowl o' Stella! So sweet and cute and adorable--I'm crazy about her.

I must also comment that the last two mornings I have run; not great distances, but 3.5 and 4 miles. My running feels strong and I'm feeling fabulous. Today Dan and Kendall and I braved the fairly heavy rain to do 3.5. It was amazing. Note re: Dan. The fact that he went out with us, in the rain, doing something he hates, is very telling. He is committed and I admire him more and more.

Okay, back to work. Brought some home and must tackle it, so away I go. Sweet dreams!

Bonne Dimanche

Another great race today, the Marine Corps Historic Half. I was a course marshal at what turned out to be a particularly dicey corner--not made any better by the idiot food vendor truck that decided to park and block traffic for about thirty minutes. There were people lined up, frustrated, impatient, and rude. I totally understand the frustration but my wearing an orange vest and holding a plastic flag does not mean I am the designer of the course or the final authority on the road closures. I was appalled at one or two very ballsy types who decided to cross over the cones separating the driving lane from the runners' lane...they had somewhere to BE and the safety of the runners be damned. I had a few unpleasant words with one driver in particular who was determined not to move. Well, I wasn't going to move out of his way so he had no choice. Can you guess who won that battle? You betcha!

The unpleasant pieces of this morning aside, supporting the course and cheering the runners was fantastic. I saw lots of friends and enjoyed hooting and hollering and trying to joke and make that little stretch of the race a little more fun.

My hands are really tired, even now at 7:20PM, from the clapping and the exposure to the morning cold. My right ring finger has been spasming more than usual and with a little more--no, a lot more--intensity. During one spasm I had enough time to turn my hand around and look at it in all its ugliness and I saw the future. It made me very sad, and a little scared.

But. Now. Making dinner. Listening to This American Life (great episode, 328: What I Learned from Television). The smell of butter and tarragon are reminiscent of a great restaurant where I had a fantastic dinner. Can't be too sad when these happy things are around.

Massanutten

I love supporting this race. This is my sixth year, the third at the Roosevelt location. The runners are incredible; driven, motivating, unbelievable athletes. We see many of the same faces each year and it's like reuniting with old friends, even though we don't know their names. All we know is that they undertake to run 101+ miles on challenging (an understatement) mountain trail in 36 hours or better. They come to us muddied, bloodied, hungry, thirsty, smelly, having finished 33.3 miles, and bravely leave us to tackle the remaining 68. They are grateful, they are kind, they are an example.

Congratulations, Massanutten runners. Just like Massanutten, you rock!

This n That

I don't know if the splint helped, but the forearm isn't sore today. The nice thing about the splint is that it keeps the hand extended without overtaxing or over stretching. I haven't yet figured out the best position for the thumb strap--two nights in a row I woke up to a feeling that it was too tight and was cutting off the circulation. Last night I didn't affix the strap but my thumb didn't stay in its designated position. There must be a trick to it I've not yet mastered. Fortunately, Aaron-the-orthotics-guy left his card and offered to come by if necessary. I'll see what happens this weekend.

Dan and I ran this AM. I don't typically run on Fridays but there won't be much running this weekend since I'm volunteering at the Massanutten 100 Miler and the Marine Corps Historic Half. It was a pleasant, misty, cool morning and we did a nice, easy 4 miles. Dan's really good about coming out since he HATES to run. I'm sitting here now, breathing. I love breathing. More than running do I love breathing, and the running helps the breathing so I love it very much.

Having a Banana Man lunch today. Nice way to spend a Friday!

Good weekend to all.

And later the same day...

C Claire told me today that her leg and foot were twitching. I reassured her again very emphatically that there is no way she is going to get this disease. That my case is a freak of nature and no one in my family has ever ever had it. Time for another visit with Ms. Hospice Counselor, I think. I know.

My arm still hurts. I hate that.

And. I'm putting it here. Today. Just in case and so when Lynne and I talk about it in a year or so we aren't saying that we wish we'd made a note of it. But I'm hoarse. Have been for a little more than a week. Crossing my (left hand) fingers that it's pollen.

I HATE THIS DISEASE.

Ouch

Just had a bad, BAD hand spasm and forearm cramp. It's all my own fault, was cutting my SECOND piece of ice cream cake and, like an idiot, used my right hand. The act of cutting was too much for me and I dropped the knife when my ring and middle finger decided to curl in as far and as fast as they could. This action was caused by the very painful spasm/cramp that I felt in the forearm. It's been 20 minutes and I still feel the pain in my arm.

I'll know better than to go for that extra piece next time.

Race pictures!!!

Wendy, Laura and moi. The two of them jumped right in and started taking care of things.

I'm talking to Dan, Becky's talking to John. Cathy in the yellow, and you can see glimpses of Mike, Art, Jannette, Brent and Janice.

Cathy, Tam, Lynne, Jannette and Janice.

Oh my. Kendall, Keri, Allison B behind Keri, John, Becky,
Ricardo, Mike, Dan, Brent, part of Allison S, Adam and Cathy.

Fabulous people, fabulous race, FABULOUS day!

Visual Updates and a Ramble

Here we have the new orthotic. Our knife model being unavailable, I had to step in. This splint, in a subtle shade of gunmetal, is the perfect complement to my race tshirt and sweats. I am the beauty queen of Paul Lane.

The claw is looking fabulous these days, too.





My apologies to the faint of heart. C Claire, who helped me, has been apologized to in spades. Her description of the above: Disgusting, gross, scary.

My hands have never been pretty, but the left (not shown) is a Dove Girl's hand compared to this mess. The ravages of age are bad enough, throw in a muscle witherer and you've got a real winner.

Pity party over. Time to report on the .47 reading in the Lithium blood level!! Shooting for between .3 and .6, so Dr Bayat doesn't feel any need to adjust the dosage. More blood work in two weeks.

If the slow progression can slow to a crawl, if I can exist like this for another 30 years (asking too much? Hell no!), I'd be happy. After all, having full use of one's right hand and arm is SO overrated, don't you think? No, it's not overrated. I will never take for granted ever again the movements our bodies make.

Have I told you this story? When I first started running, and discovered how much I loved the trails in the Fredericksburg Battlefield, I went out one cold winter morning, all alone. I ran and ran until it occurred to me I must be some sort of fool, running in the woods when no one was chasing me, not chasing anything. I continued and was laughing to and at myself when all of a sudden I felt like--don't laugh--a deer. Yeah, I must have zoned, but it was the most wonderful sensation. I felt every muscle in my body propelling me forward, each step, each turn, each hill. I marveled at the machine that was my own body and was transported. After years of inactivity, smoking, SLOTH; here I was running, running, running, breathing the cold air, being a deer. Sounds idiotic, but that's how it was. And still is, sometimes.

I'm thankful these days for every step I take, running, walking, doing the Happy Mommy dance with Cal's kids, all of these little gifts in the form of a footstep.

Allison, did Beck used to do Happy Feet? Well, that's how it should be always.

Sweet dreams, my loved ones.

Le Splint

I think I love the orthotic. When I woke up and took it off, my hand didn't feel all tight and stiff. Okay, it felt stiff, but not curled up stiff. And my fingers felt happy. If my fingers are happy, I am happy.

It's ugly and, once on, restricts anything I might do with my hand. I actually don't care. Today I love it.

I believe this is called adapting.

Recap

Race: Wonderful. I was amazed at how many people showed up. It wasn't the best weather (well, for me it was perfect) as it was overcast, drizzly, and chilly. Ran in a tank and felt great throughout. My pace was casual, I took walks (despite an incredulous look from a friend) and I was surrounded by friends the whole time. Becky, John W, my sister and my cousin, Lynne, Adam and Ricardo, Tam and Cathy and Melanie, and friends from the law firm and D-land. Jeff from IJ, Isaac, Allison S and Allison B, Kendall and Keri, even Tim the FedEx man. And the crew from TIS, without whom the race wouldn't have happened at all. I hope I get some pics so I can post them here. I'm told over $7600 was raised for the benefit of the ALS Association. Thank you and well done to all my kind hearted and generous family, friends and supporters. I love you all.

Balmer: Also wonderful. Our hotel was perfect and we had an upper floor with a nice city view.

Upon arrival the weather turned fabulous and we walked to Federal Hill and shopped (of course we shopped!). Jenny found a cute little dress and flip flops and C Claire found a pair of shorts. We returned to the hotel, cleaned up and got a cab (thank you, Mr. Cabbie, for the reduced fare!!) to the previously mentioned restaurant in Fells Point.

As it happens, the unnamed but much appreciated recommender ALSO picked up the tab for dinner (I'll never be able to adequately repay such a kindness).

Sunday we drove to the pier and met our tugboat connection.

We were the coolest people on the harbor, getting our very own tugboat ride. Becky and Jenny each took a turn at driving, and Jenny managed to do a donut (much to our tugboat friend's discomfort!). Fortunately the Coast Guard wasn't watching! None of us wore our captains hats, so we didn't get to experience the brig. My heartfelt thanks to my dear friend for accommodating this group of landlubbers.


The Orthotic: Got it today. It's big. Ugly. And a very visible reminder that I've moved a little closer to that which I try so hard to face with a smile. My smile wavered today, but Aaron (the orthotics guy) said he'd have none of it, that I was in incredible shape given the length of my diagnosis (compared to others....some, many, of whom are already in wheelchairs). I'm trying hard to be brave, but....I'd thought perhaps the twitching had decreased some since I'd been on the Big L (that's for you, Becky) but it hasn't. Not really. While I write this I feel my shoulders and legs going crazy. When I rest, my arms from shoulder to hand move so much I feel like they'll jump off the desk. HOWEVER. I'm still strong and only have the one dumb weak limb, so I am grateful.

Lots of gratitude floating around this post. Seeing all my friends on Saturday, getting the surprise Saturday night, the tugboat ride Sunday, and spending my weekend with the daughters I love so much, I realize just what a lucky woman I am. And for that I am grateful beyond measure.

Mother's Day Weekend!

So, after the race, the ensuing conviviality, beer, lunch, and shower (maybe in that order, but who knows), the girls and I are off to Baltimore.

We're staying near but not too near the Harbor and have reservations at a lovely little restaurant that comes highly recommended (thank you, unnamed but much appreciated recommender). The next day we are going ON A TUGBOAT! Another unnamed but much appreciated tugboat type has made the arrangements. All I can think is that this would be a very appropriate time for the girls and I to don our captains hats (shades of the Outer Banks!) but was told quite emphatically such attire would land us in the brig. So no captains hats for us, sad to say. We would have been very lovely, and it is rather a loss for the tugboat people.

It should be a fabulous weekend.

Gratitude

The race is tomorrow.

I've said this to a few people today but want to put it here so it is said permanently: The people who have gathered together to organize, support, run or otherwise participate in this event are incredible. Many of these people I have known for less than a year, but their kindness and generosity humbles me. I am truly, truly honored to know them. Their example is one I hope to follow.

Dining Aids

Almost forgot. I have decided to purchase my special dining utensils and wanted to show you a few pictures.

This is the type of knife I think will be most useful. Our lovely model has pretty fingers and a lovely, muscled hand. This must mean my hand will look as beautiful if I use this oh so attractive and functional knife! And for the low low price of $19.99, it's a steal!


This spoon looks just like the one I got at the clinic. The handle is very large, but it is awkward.


There are others I can buy that have bent heads. As I said previously, very Dali-esque.



Okay. NOW it's time for bed. XOX

Need to run but ate a cheeseburger instead

There is so much s*** rolling around in my head today after the email exchanges with my brother. It makes me tired to think about it. One of the best ways to deal with this would be to go for a run BUT I ran this morning and I'm going again tomorrow night SO I decided the best, most easily achieved alternative was a cheeseburger and fries AND A CHOCOLATE SHAKE. My hips are angry at me but they'll get over it. One must give into temptation now and again, mustn't one? Particularly after such a harrowing day. (Imagine me moueing).

The orthotics man came to the office today and the splint has been ordered. I'm sure it will be a lovely addition to my accessories and I will be the envy of all.

And now it is just past 9, I'm totally fried, so I'm going to bed. I will see you in my dreams....

Up to the minute reporting

Had my blood drawn at 9:30AM. Testing the Lithium levels to make sure I'm in the right zone, not toxic. Haha, I AM toxic at times, but it is totally unrelated to the drug.

Will likely hear from Dr Bayat before the end of the week.

Tomorrow I am being fitted for a resting hand splint, to prevent my fingers from curling at night. As I said to Lynne...moving another inch closer. I will take pictures of the claw and its "new dress" once it arrives. Are you simply breathless with anticipation?

That's the news for this hour. Will report again when something interesting develops.

Sunday Check In

Sunday night, getting ready for bed. Have packed my gear for an early, easy run tomorrow morning. Just said goodbye to one of my dearest, oldest friends who was passing through on her way home and stopped to say hello.

I'm twitching with still living nerves and muscles and feel fabulous. I wonder if it's because I've just taken my nightly dose of Lithium? Hahahaha!

C Claire says she's going to create a playlist for me. The first two songs are Atrophy and Lithium. She's such a nut.

Anyway, time for sleep. Sweet dreams, my dears.

Love

So. Got a nice message today. There is history there, with the brothers, but all that notwithstanding my niece loves me and I love her and her support buoys me. Thank you, my darling girl, for all that you are and all that you give. It is a treasure. YOU are a treasure. My life is enriched because you are in it.

Good running

Nothing like a good run to start a day off properly. I'll admit to having walked a few hills that even last year I would have forced myself to run, but the breathing was good and the morning was fine and the beer was smooth and the bagel was delicious. Who could ask for more.

My legs might feel heavy but I'm not going to stop running, because when I CAN'T run anymore I don't want to regret having not run when I still could. Does that make sense? As I said to Lynne, if I was told I only had 85 minutes left to live, I'd make sure to have fun for 85.5 minutes.

I've come to a better place with this situation. I can't change it, I can only do what I can with what's available. Day 5 with Lithium. Day 1 of the rest of my life. Gonna go have some fun.

Love you all so much.