The plastic bag

I carry my meds around in a plastic ziploc bag because they spill. They spill because I can't open the bottles easily so, once opened, I only close them a little. Many times I've had to collect all the little lithium or rilutek tablets and put them back in their little bottles.

I wish I didn't have ALS.

Very Very Quiet

So. Today is one of those days where I feel good, feel upbeat, but in a very quiet sort of way. A couple people have asked if everything is okay--which it is--I'm just not as noisy! It's the right sort of mood for a quiet night at home.

My right hand is a little less swollen today but I've noticed a hard swollen spot at the base of my thumb on the inside--it's really noticeable and sort of grosses me out. My whole thumb is really pretty awful these days, but this new thing is just YUCK. I'll give it a few day and will call the dr if it doesn't go away. Not that there's anything to be done, but just to check in.

Coming back from the lab today (yes, blood test day), I saw a man on a recumbent bike. The handles were positioned such that he could rest his hands on them while his arms rested by his sides. I stopped him and asked if there was any stress on the arms and hands and he said no!

He advised these bikes are fairly pricey which may put a period to any plans I was plotting (oh yes, she can alliterate), but it would be so nice to be able to bike again. We'll see.

Oh, and I've solved the mystery. I suspect the foreign visitors will begin to abate soon since the keywords which I think brought them here aren't being mentioned in these newer posts. Not that they aren't welcome--they are--but the sudden influx was such a surprise!

Very Very

I am very very slow, which is nice to hear.

Slow progression doesn't mean NO progression, and there is evidence of more weakness in my right upper arm, and there is now some weakness in a couple of the fingers on my left hand, but otherwise things are about the same. Hoffman's is still missing, and Babinski still hasn't shown up. I didn't see the shrink, the rest of the team zipped in and out, and Clinic was done by 10:30.

Blood level was .36 . Another blood test tomorrow. Trying to manipulate my diet to get the level up over .4, because (as I've said before) I don't want to increase the dosage again.

Lots of alien visitors to this site the last couple days. Where are you all coming from? And why? I'm curious to know, especially since there has been such a lot of activity just since yesterday.

Sigh. I'm beat. Goodnight everyone.

Gotta find Polly quick.

Not the most comfortable ride home, that's for sure. Imagine sitting in your car with the top of your dress falling off your shoulders. I think I'll plan better next time.

When I came in the house I dropped my keys. And my sunglasses. And it occurred to me I drop things all day long.

When I looked at the mail there were two statement thingies from Blue Cross/Blue Shield. They are a frequent and regular correspondent.

Checking the PLM forum, I found this:

Dear all,

You are receiving this message because you or your PALS are participating in or have participated in or requested information about the online worldwide ALS lithium study. We wanted to let you know that the preliminary three month study report is now available for download. Please go to http://www.patientslikeme.com/forum/ and download the report from the latest "updates" link at the bottom of the page. Please note that this is a preliminary report which has not yet been edited or approved by PatientsLikeMe.

We will continue to collected data through the 6 month point after which we will write up a final report. All data collection and analysis after that point will be done by PatientsLikeMe.

Our basic results so far are, in summary:

At the three month point: Lithium does not affect ALS progression rates, at least for most PALS
Taking riluzole with lithium does not make a difference
Reaching a blood level of 0.4 does not make a difference
The ALSFRS-R score when lithium was started doesn't make a difference
Lithium may relieve cramps and fascics and spasticity for some at low doses (0.2 mmol/l blood concentration)

Although not in the 3 month report, it seems that PALS who are taking an Omega 3 supplement are progressing a bit more slowly. There was also an interesting research report that came out yesterday that calcium supplements may be helpful (Medications and laboratory parameters as prognostic factors in amyotrophic lateral sclerosis. Qureshi M, Shui A, Dibernardo AB, Brown Jr RH, Schoenfeld DA, Cudkowicz ME.) The research abstract didn't give the dosage, but a quick search of PLM indicated that many PALS on calcium are taking ~1200 mg/day.


Thank you so, so much to everyone who has provided data for the lithium trial. So far our research results have been disappointing, but it is so much better to get results quickly so that we can move onto the next thing rather than to have to wait 2 to 3 years for the traditional research machinery to do its work. You have shown what a dedicated groups of PALS and CALS can do!

Best wishes to everyone -- I'll be in touch,
Karen

Hello again everyone --

I should have mentioned in my last email:

If you decide to stop lithium, please remember to do so *SLOWLY*. Some PALS are having trouble with withdrawal. Decreasing your dosage by 150 mg/day per week is recommended. If you experience problems (increased fascics, speech slurring, etc.) try increasing your dosage again for a little while and then slowly decreasing again.

Also, if you stop lithium please make sure to let me know!! Just send me a message with the stop date and I'll record it on the spreadsheet. If you stop lithium I'll stop asking you for monthly ALSFRS-R scores but I will still ask you for an ALSFRS-R score at the 6 month mark so that we can have a complete accounting at 6 months for how everyone is doing, and prevent selection bias in the data set.

So many thanks again to all -
Karen

Karen is one of the researchers associated with PLM (I think). I have to go to the store tonight so I will buy some omega 3 pills and some calcium. I'm not ready yet to discount the lithium, either. Those of you who know me have heard me say if I thought it would help, I'd eat worms from China. I. Will. Try. ANYTHING.

What do you think? I'd love to hear your opinion.

Trapped in my little black dress

This morning I decided to wear my black dress. The last time I wore it C Claire helped me zip the back the last little bit. Since she's at camp, I decided to ask someone at work to help me when I got in. Lucky for me Nicole was here!

Had a great day here at thejobIlove and everything was wonderful. At some point, though, it occurred to me that there wouldn't be anyone home when I got there. And I will not be able to unzip my dress by myself. I'd forgotten.

I won't be able to unzip my stupid dress. How did it come to this?

Amy--sweet, kind, caring Amy--came to my aid. Before she left she unzipped the dress halfway down. So when I get home I won't be trapped in my little black dress.

Tomorrow is clinic. Not seeing the pulmonologist (see earlier post) or the shrink so I'm hoping to get out a little earlier than usual. I'm going solo this time.

Must end this dreary blather. Time to face traffic.

The claw

I know the previous post is all happy and upbeat--and I still feel that way. But I just caught sight of the old withered claw in not so great light. It's really ugly. Bony and veiny and bent and curled and nasty as hell.

Luckily I am not bothered by it so much anymore.

A fine way to start the week

As I did for two weeks last year and am doing again this year, I cram into my life all the things I don't have the opportunity to do as much during the remaining 50 weeks. C Claire is at camp and, while I miss her so very much, I pretend during this time she is at college and less dependent on me, which gives me the freedom to catch up with my friends and do my "alone" things I love so much.

I had dinner tonight with two of my favorite people: Jeff and Patty. Jeff is my dentist and Patty is his lovely wife and able office administrator. I found them quite by accident the year I went to work for GT--I'd lost a filling and their office was around the corner. How serendipitous was our meeting; we've become great friends. Tonight they came into Arlington to have dinner with me. Three hours passed like five minutes...it was so nice. Great way to end the day.

As I mentioned earlier, the day began with a refreshing rainy run. As we were doing our after-run stretch, Kendall and I tugged on the tree branches and brought down little sprinkles of "tree pee" which were cold and refreshing. Great way to start the day.

Between the run and dinner there was work. You've heard me say before how much I love my job. I do. It just fits so well.

Off to bed. Sweet dreams to my loved ones.

Dreams

Last night I had some random and scattered dreams. I dreamt I could hold a pen properly and write my name legibly (if only!); that there was a big, friendly rat in a hotel room in Rome; that I kept getting on the wrong trains and ended up missing my train; that I forgot my passport; that I helped my wheelchair bound friend Isaac up the stairs (he is not wheelchair bound, btw). There must have been more, but I don't remember anything specific.

It's raining this morning and I'm meeting Kendall in two minutes. You know I love a rainy run!

Lyrics

I took C Claire, newly 15, to camp today. On the way we listened to the Regina Spektor CD she had me buy for myself for Mother's Day. One of the songs, "On the Radio," has these lyrics:

While we were on our knees
Praying that disease
Would leave the ones we love
And never come again

She made mention of it. I asked if she felt it would be worthwhile to see Kate again after camp; she said yes. Then she held my hand.

I miss her a ton.

He did it again

Majestik (from PLM) posted this while I was gone.

Liquids

I checked an earlier post where I'd included information on what foods affect lithium levels and was delighted to discover that beer and wine and pastries and all the delicious things in life contribute to a higher lithium level. I'd cut back on my alcohol intake because I was afraid it would have an adverse effect but now think it isn't too terrible to have a glass of beer or wine during the week. All in favor of my having an extra glass or two during the week say "aye."

Excellent, motion passed.

We'll see if I can consume enough between now and my clinic next week to make a difference because, if the level is still low, I want to see if a change to my (liquid) diet will render a dosage change unnecessary.

There's been a lot of back and forth on PLM about the benefits of lithium. Several people have decided to stop taking it because they've either noticed no change or they've noticed increased progression. I'm still on the side that hopes it may be helpful. I haven't necessarily improved but it's still early days. Admittedly, my hand is somewhat worse. Again, it's early days. And the Italian study indicated improvement (or mimimized deterioration) occurred after nine months or so. I am a slow progresser, which may be aided by the lithium. Not having any idea where I'd be without it, though, this is all speculation.

A sobering moment this afternoon: When I left the office and was leaving the garage, I realized I'd forgotten to prepare a cup of coffee for the ride home. My eyes had been feeling tired since about 2 and I was determined to bring the coffee so as to avoid yet another sleepy ride home (which has happened a couple times this week). There is never a drive-through fast food place around when you need one, so I opted to go to the 7-11 on Lee Highway. I poured the cup and headed to the register and dug out a few dollars; the coffee came to a buck and change. I had three dollar bills in my hand so I tried, clumsily, to extract two to give to the cashier and the remaining bill just fell from my right hand. I picked it up and threw it into my bag, feeling awkward. Then the cashier gave me my change, but I forgot to use my left hand and held out my right. The change fell right through my idiot fingers which don't cup anymore. Once again I bent over to pick up the change. The cashier then gave me the rest of the change, but this time I was smart and switched hands.

When I got in the car and was all settled in I heaved a big sigh that the ordeal of getting the stupid coffee was finally over. It did made me think, however, about how frustrating the situation had been, and how much more frustrating it would have been if I was worse off. Which made me start thinking about being worse off. Which I am not, so I kicked myself in the butt and took a sip of the hot coffee.

My ride home was happily non-drowsy.

Hands

Oh my, what a red-letter day.

I cut open an avocado all by myself! Okay, I did it left-handed but I still did it! I tried with my right but the dumb knife (which I held lightly) would not penetrate the skin. And I opened the package of brats by myself, too (so what if I had to use my teeth to pull the resealable bag open). I was able to take the dishes out of the microwave with only a little tremble, no spills. The little container of pre-cut pineapple gave me some trouble, but I conquered it. I feel very satisfied.

It's amazing that I can be so gleeful about these simple things, but I am. And it's interesting how often I just naturally default to my left hand now. Not for everything, but the list is growing.

I had a great run this morning (you knew THIS was coming, right?). I ran the first part of it solo but met Kendall and Meghan at the halfway point so ran back with them. I was feeling so strong--I don't understand where all this energy is coming from but I'll take it. It's not making me faster but that's okay. I never was very fast anyway so speed isn't that important.

Including a couple pictures, courtesy of my first born. One is me, pre-flight.

The other needs no explanation.

Feet

It was time for a new look, yes? I decided, since there were so many posts about running it would be uber-appropriate to use a related photo. The feet you see are racers waiting at the start line at the 10K my co-workers put on. What's fun is I can identify all the feet. So silly!

I know it's odd, but that's in keeping with the blog name so it totally fits.

Hope everyone doing well. I'm in fabulous spirits!

5+12+8=

So the aggregate mileage for the weekend was 25 miles, this after yesterday's eight. I was surprised how strong I felt yesterday after the previous day's 12. No doubt about it, I was tired, but not so tired I couldn't run. Very encouraging, especially with the heat and humidity. The rain was a huge factor, of course. I don't know if I could have managed so well in glaring sun.

As Lynne and I ran in the battlefield she calculated it took her eight minutes to get 30 seconds ahead of me. We'd walk together, start running, then when there were 30 or so seconds to go until the walk she'd turn around and get back to me just as the watch went off. I told her I would record that fact here so we could measure it when I start catching up to her again.

Anyway, given this solid base, I'm confident that NY will be doable. I don't intend to attack it like I have before, this time I'm going to run gently and conservatively, walk whenever I want, even switch up the walk breaks to something much more Louise-friendly.

I feel so good. What a gift.

Rain

Oh my heavens. I am still riding the high of the endorphins from this AM's run. When I left the house at 615 it was humid and gray. Apprehension set in but I was determined to keep a conservative pace and stick it out for the whole two hours.

Arriving at Pratt Park near the one hour mark we heard a rumble of thunder. No lightning, so we continued on. When Lynne came back for me during a walk break we commented on the thunder and she said she'd had a moment of concern but that it seemed to have been fleeting. Thunder is very arrogant and doesn't like to be called fleeting so, in response to Lynne's remark the thunder decided to give us a long rumble, after which came a downpour. I was elated; I reached my arms up and greeted each drop with pleasure. It rained for about 30 minutes and left me with a light heart, a light step, and a joy I haven't felt in a long time.

I pushed through the two hours (approx 12 miles) and could have kept going. I felt the way I described in a recent post: I could have run forever. Thank you, rain, for the gift you gave me this morning.

Sub 10 and Kettle Corn

I managed to pull out a sub 10 pace in today's race. Imagine my surprise when, at each mile mark, the marshal announced the time and it was under 10 at mile 1; just over 20 at 2; under 30 at 3, etc. I finished with a 49 and change. The nicest part was feeling good the whole time. No mistake, it was hot, but I ran an easy pace and pushed it when I felt strong and took it down when I felt tired. I even walked through two water stops, so I'm really delighted!

Lynne did a 42 and change--she's SO strong.

We rewarded ourselves after with our favorite Magic Hat #9, then walked around the Heritage Festival in search of Kettle Corn. Two bags of this wonderful treat came home with me.

Happy Fourth of July to everyone!

Remembering when

I decided to run tomorrow's five-miler here at home. It's an awful race: late start (7:45), in the heat, not my favorite distance. Whatever. It's a run and I'm determined to run while the old legs will still carry me. That said, my head was still all negative and oh-I-hate-this-start-time and yadda yadda.

While C Claire and I were driving home from dinner with Lynne tonight I got to thinking about a time, not so long ago, when if the day was fine (translated: cold) I felt like I could run forever. Running came to me late (42) but changed my whole world. So I decided to stop being so gloomy about the five-miler and, the heat and late start notwithstanding, will run this race with a fabulous smile and carry in my head, with each footfall, the recollection of how much I love this sport.

I am a runner. I'm not a great runner, but I am a runner.

Huffin' and puffin'

The FVC reading was 90%. It was 80% but I got another go and improved. Dr Hasselquist says it's still in the good range but it's down from 100%. Point to remember: I caught a cold and some of it lodged in my chest. So I won't worry.

I ran Monday night and again this morning. Not quite sure how I feel about things just now. Granted, I had a 10 day break AND I've had this cold but the running just doesn't feel right. Maybe the heat? Eh, it'll be fine. Just in a funk.

My idiot legs cramped like crazy the last two nights. Back to regular doses of tonic water, which also seems to help any hoarseness (which returned as soon as I got home). Dr H says the hoarseness is NOT Louise-related.

Update complete. Love to all.

Back to earth

My delightful niece sent me an email with this link, and I had to share. It made me very happy to watch it. I hope you feel the same.

The first day back in the office was very pleasant. It's really become a home for me, and it feels good to be there.

The dumb old blood test revealed another .39 so will have ANOTHER test done this week and, if it's still low, we may have to change the dosage again. I wonder what changes I can make to my diet that will improve the situation. I'll discuss that with Dr B before making any dosage adjustments.

I have an appointment with the pulmonologist tomorrow morning. While I was gone I got a stupid cold and some of it went to my chest. Let's all hope my FVC is still nice and high!

Time for meds and bed. Sweet dreams, my dear ones.

Bucket List Item #1 and 2

While fulfilling item #1, was presented with an opportunity.

Item #2:


Home safe. Love to all.