So I wrote this after reading the umpteenth article on the latest MS research. They haven't changed much in the past I don't even know how many years. And I thought I'd give it a go. If if you want to try one yourself, it's really easy. Lead in with a catchy promise. (Don't worry, you won't have to deliver anything really substantial or actionable. Or you can even drop the bomb that the research has already proved fruitless if you like, in the last paragraph. Just string them along as for as many paragraphs as you can). Then you have a brief bit describing the antagonist of your choosing and say how many people are dealing with the chosen malady and the current state of what can/cannot be done for those people. Next, what/how a new discovery was made and the possible implications it might have on future treatments, patients, stock prices etc. Occasionally the entire article can be written/sponsored by a drug company and is really just a long glossy ad. With models.
I do not hold anything against the drug companies, the researchers, or the doctors dealing prescribing the drugs. We're all doing the best we can and have families to feed. I know this is easy for me to say when I am not using my researchers or risking my reputation or entire business on exploring new frontiers of medicine. I'm just asked to risk various parts of my already limping along body and sometimes my life, if I choose to take the offered pills, with no guarantee they will help. Yes, decades of having never-to-be-realized promises dangled in your face can make one a bit cynical so I put it to good use and at least got some entertainment. If anyone wants to take a stab at it and get their satire on I'd be delighted to read your version. Email me or leave a link in the comments.
Sorry to read like a drug ad, but the serious note will have to wait until next time as the baby is up.
At least she delivers as promised.
Which in Malachi speak, means whatever you are laughing at is definitely not funny.
Which I thought was a pretty clever use of language, coming from a kid who will readily wear a garbage can on his head, just for ha, ha. Or maybe it was to cover up the fact he was not wearing pants, which in my opinion makes this picture double ha, ha.
It has been unusually hot, not warm, here so diapers are pretty much optional for the babies these days.
The options being 'do I leave my diaper here? Or there?'
It makes for fun treasure hunts, but it also discourages diaper rashes so we're not too concerned about it.
I had already declared it a big-kid-pool-free summer this year (with two toddlers I was not going to add any stress to our days) and the heat did not cause me to relent. Our last pool finally bit the dust so setting it up was not even an option. I did feel sorry for the kids. They were hot and crabby all day and every day. So being the thoughtful parent I am, I didn't do anything about it. Until they started playing what sounded to me it like the Spanish Inquisition all day long. So when the cousins came to visit I ventured out in the heat to get them a slip-n-slide. Three different stores. No luck. Ordering one wouldn't come until after the weekend. Not wanting to face the kids empty-handed, I stopped by the hardware store and bought a $10, clear tarp. I considered black, to keep the water warmer, but thought it might be too much of a blot on the weed-infested landscape and Shane might actually notice it. Its on the other side of the yard, and so far so good. First we had to figure out a way to secure the corners with bags of extra mulch, of course. The hardware store only had metal steaks, and being the kind of parent who prefers to avoid emergency room visits at all costs, I passed, and we just used what we had.
It worked out pretty well. Until they started complaining about bruises from the hard, dry ground under the tarp. Its been unseasonably warm and dry for awhile. So it was REALLY hard.
"Really, Mom? You think a piece of plastic and some cold water will buy you a peaceful cup of coffee?"
So it was off the dollar section for some air mattresses to cushion their rides,
And some baby shampoo to add some speed. The shampoo had the added bonus of making everyone smell great and allowed us to skip bathtime. I think all together it added up to several hours of no fights, plus quiet time in the house for the non-sliders. I am also hoping to get the extra bonus of the tarp acting as a magnifier and frying the bacon out of the weed bed underneath. I'll move it every couple days to spread the death but avoid the unwanted smell of decay that can accompany it. Making the entire yard unusable. Because, as Shane says, just like a trip to the grocery store with Muffin, that would be 'none fun'.
Researchers Discover novel new ingredient in your daily cup of coffee might just maybe offer hope to millions of MS sufferers.
A night janitor at UST, University for Sciency Things, may have stumbled (quite literally) upon a stunning discovery which may lead to new treatments for patients with MS. Or not. But which will definitely lead to a fresh coat of paint in the biology lab. Sources report the janitor, Ken, had the happy accident of tripping over a cord while vacuuming and holding his thermos of black coffee, sending his drink splashing across the wall and across the papers of the head researcher's desk. The next morning Head Researcher, a tea lover himself, read the reports and concluded coffee may offer a benefit to people with MS and should definitely be looked into.
MS is a degenerative disease of the nervous system. No one knows exactly why or how the fatty myelin in brains and spinal cords of MS patients degenerates leading to nerve damage and various funky feelings and symptoms ranging from inappropriate laughter to inappropriate blog topics . And lots of other inappropriate things. MS affects many million people world-wide. You probably know someone who has it. Great Aunt Matilda didn't wear that cooling vest and sweet leg brace just to make a fashion statement. Uncle Vern? Did he seem a little unsteady and slow at the last family reunion? Oh wait. Never mind. He really was sauced. Moving on. The point is there are lots of events, fundraisers, and maybe even some orange(for MS) t-shirts out there. So this article (and the 50-almost-exactly-the-same ones with no useful information to follow) are important to all of us.
Researchers say it is too early to say for sure why/if caffeine could benefit MS patients, and are quick to discourage anyone from self medicating.
" We really do not want to see people just going off all willy-nilly and start chugging this stuff on their own. Random, placebo-effect controlled trials with blind-folded doctors will begin in about 10 years and in another 10 we should have some foggy idea of what may, or may not, be the back end of a rat. It's really hard to tell when they have those soft pointy noses and those long pointy tails and you can't see a bleepin' thing. We realize a lot of patients, rats, and doctors and will not be around by then and we are sincerely sorry. We are doing everything we can to minimize loss of life. Our new protocols, including making sure ALL the windows are closed, should result in keeping more doctors for the next phase. There is a 'dead rat quota' each trial must reach before we can start offing actual patients, and we are all about killing things by the book. Until then we encourage everyone to stay on their neurologist-recommended drug of choice," says Pharma4All spokesman Si De'fect.
(Disclaimer: Pharma4All is sponsoring the trial and will attempt to patent caffeine and stop all future research should it be proven to be helpful. If they are unable to get the patent granted they will drop all research into the new area and focus on their current therapy product lines, the inject able Lumps4You, their new oral medication Nausea4Ever, and the still in the pipeline Itsnota2mer, which is up for FDA approval next fall.)
The research and trial findings will first need to be peer reviewed. Si explains this is a very important step in new drug research.
"We feel it is essential we all tell the same story. In order for this to happen, we will need to spend a large amount of time reviewing the script over larger amounts of red wine and steak at a remote and exotic location. Most likely Tahiti."
"Last year a separate company, LimpBGone, made the realization that having legs did NOT, in fact, increase, or decrease, your chances of developing MS. But it was not until they were all cozy together in the Swiss Alps, putting on skis, during peer review time, that they were able to notice they ALL had legs. And so did the MS patients in their trial. So you can see how crucial to the research process these trips are."
Si also explained that though it was initially looked on as a setback, the findings have undoubtedly lead to new trials, therapies, and at least forestalled any new research and money being wasted on such a 'dim witted' hypothesis. Most likely the 'eureka moment' only resulted in another trip to the hotel spa and a cold drink for the researchers. Which was not a bad outcome for many of the patients waiting for trial results.
"It could have been a lot worse. Had the research been released prematurely, we might have had people traveling to far off places to get their lower limbs hacked off, without their doctors approval or oversight, in a desperate attempt to lower their odds of landing in a wheelchair due to MS."
Thankfully, UST researchers are responsibly keeping quiet about their coffee research until they know for sure what they don't know. At which point, a coin toss will determine whether or not the results should be released or if a trip to the Serengeti would be fun first.
Not that looks are important. We all know it's appearances that count. Unless you home school. Then you wear whatever you can find and you can show your student ID card if the fashion police catch you.
Fortunately, the only social outing we had this week was to a homeschoolers' event so as long as we could run faster than the other sweatpants-snow boot-sporting kids we were safe.
Unfortunately, its been really warm here so snow boots were out of the question. Which was a bummer because Malachi has snow boots. In fact right at this moment, snow boots are all that he has. He outgrew his regular shoes and his water sandals got left at the Grandparent's this weekend. Normally that would not be a problem as there is generally someone wanting to or needing to stay home from any errand we need to run. But everyone wanted to go to the much anticipated delayed-yearbooks-and-pizza-party.
So, also due to the warm weather, I decided socks would be just fine for Malachi. It must have been fate, because we actually found matching socks for him. Not so much for Fiona.
Not that she cared at all. She was just as confident striding around the parking lot, as if she were wearing Jimmy Choo's, instead of her brother's mismatched hand me down socks. Socks rarely get worn out. Or worn period. There are plentiful, at least half of them. The other half have migrated to wherever it is kids' socks go. Thank goodness snow boots are shoes AND socks in one great package.
Shorts? Oh, he knows how to make shorts. He also has a t-shirt he made himself when the warm weather caught us by surprise. But he decided to wear his fancier one that day.
We got our books, pizza, and some treats and hid in the shade of a much-appreciated chestnut tree.
Then quickly hopped into the air-conditioned car. Where the kids reenacted this scene from Eric the Viking. Please tell me this is how your kids get in that car too.
First, I need to mention that this post is sponsored. Sponsored by my mother-in-law who took the three middle kids over night. And to the beach. Fed them ice cream and treated them to a breakfast on the patio in the morning. And apparently took them shopping because I do not recognize Malachi's shirt here. Thank you. I'd also like to thank Fiona for taking a timely nap, right now, and my brother-in-law who is taking Cyril to some store to look for parts for the outboard motor he is refurbishing. So quite time = brain space and maybe a post. It also means I have only myself to blame if this all goes South. Or North, if you live in the southern hemisphere. Do they say that? I don't' know.
But to today's topic. I've always been, or thought of myself, or pretended to be a bit of a hacker. Not computer hacker. Although sometimes I can get mine to turn the screen a real pretty blue for a long time. I don't know how to make it go away so its kind of a one-way trick and not one that impresses anyone that needed to use said computer. Soon. But that is what Shane is for. Among other things.
No, I'm more of a life with kids hacker. And mostly out of necessity. Need to keep the kids in the yard? grab those garbage cans, your neighbors too, and a rope, maybe some plywood for good measure and you won't have to check on the kids for hours. Neighbors and spouse might not be thrilled, but children make everything worthwhile. If you live in a neighborhood with and HOA, this one will not work. E-mail me for some other options. Or have your husband build a fence. Though using this hack has shown to have the added benefit of hastening things to that end. If a real fence is what you're after.
I get my skills from my dad. He can make pretty much anything out of anything else and has always been a bit of a visionary. Water conserving toilets? Saw it coming. He was putting bricks in the tanks of our toilets 30 years ago. Sure we had to flush an extra 5 times but that brick make all the difference on the water bill. Sometimes we would come up with workarounds to his hacks and then,
"Hey, who took the brick out of the toilet?!"
And reminding us with each flush.
"Hey!! Stop that. You know water doesn't grow on trees!!"
Also, if he says 'a real pretty blue' you can hear his light accent from growing up in Hungary. Maybe he was foretelling my future of blue screens. Visionary, I tell you.
So now you know where I get it from. Though I don't do welding or build log cabins or plumbing or wiring and a host of other things Shane has implored me not to so while he's at work. I'm kind of limited to objects I can move myself and duct tape. Or taping two objects I can move myself together. With duct tape.
But it has been a quiet time in project land for me lately so I was thrilled when I found a small project the other day which allowed me to learn some new skills as well. Shane? Oh, he'll get over it.
We have been having some unusually nice weather here the past couple weeks. As in, I am wearing shorts. In June. In Seattle. This never happens. I'm thrilled. However, Kateri's window had somehow developed a tear in the screen so I told her to keep it closed to keep the bugs out. Which is impossible at night after and 80 degree day.
I know you can get new screens at the hardware store, but that requires a trip to the store, and probably with multiple children so why not just fix it yourself?
My first thought was my old go-to, duct tape. But I must have been doing a lot of projects lately because we were out. Even the kids' fancy Christmas rolls of it were empty.
So I thought of other patching material we might have around the house. Or yard. I remembered the $.99 strainer I picked up at the thrift store for the kids outside play. It would be perfect!
Now I just needed a way to attach it, without the help of my favorite tape. Then I remembered the dark grey speck of something someone had accidentally gotten on an often used light switch. Three months ago. That was some pretty strong stuff. And I knew where to go to get some. I called my supplier.
"Cyril, will you go in the garage and get me some J.B.Weld?"
Cyril mixed it up for me and we played with some different patching layouts for a bit. Then smothered the weld on and put the hand-cut custom made patches on top. But first we put down a layer of aluminum foil (have you ever heard a British person say aluminum? Is sounds like it comes from something magical. Like a unicorn or something. FYI IMHO). The foil kept the screen from fusing to the table and interfering with future card games, drawing, or sewing projects which Kateri currently uses her workspace for. We are responsible workers.
Then, since the screen and the patch were bent in different directions, we decided to use some books we found on Kateri's shelf to weight them down while the patch dried. Which takes a few hours. But will last a lifetime. Just ask to see the light switch sometime. Also, make sure to put more foil on top of the patch or you will have a book blocking your view. For a lifetime.
The next day, we trimmed the patch a little and replaced the screen and, Ta-Dahhhh!
No more bugs.
I called Shane in to witness our work. He outwardly pretended to be nonplussed. But really he was SO plussed he was speechless.
Its nice to be able to show him all the clever things he never dreamed about me doing when we got married. But now I can show him and he is so thankful and realizes what a true gem of a wife he has.
I told him I would do it differently if I had to do it again. Learn as you go and all that. Shane complained of a mosquito bite the other day and I found another rip in a screen in the kitchen.
But we'll just keep that one closed for now. For some reason I can't find the JB Weld.
I never intended to take a long foray into medical blogging. Sorry if you are here looking for cute baby pictures. I hope this makes up for it.
She still really likes the fan. If she got her shoulder a little more exposed this could be a true 80s photo.
I promise to wrap it up soon, but fist a correction. The other day was INTERNATIONAL MS Awareness day. Not National. No idea how I got such an auspicious occasion pegged wrongly. Actually I have lots of ideas. They mostly start with "Mom!......" and end with "So what?"
Flippancy aside, I had considered this post's title as a separate site to catalog some interesting things I've come across along the way to nowhere and which I might want to keep an eye on in the 'what is happening to my brain?' department. Along with some personal updates for my records which are to date loosely kept in my head. Which is not a super secure or reliably easy accessible location these days.
The latter reason I feel a bit funny about ( no one wants to hear about your hurty knee). But I've found over the years I appreciate learning from other's experiences, research, experiments, or mistakes. Why not add my own? And I'll promise to keep it clean, Though if you've read some of my kids' antics and you've come back, I think there is not much of a problem with what you can handle.
So first in the fascinating field of research, is this new discovery. Which could lead to new mechanisms for delivery and therapies for a host of diseases. Which is great news considering this study. Though technically previous studies would have put me firmly in the progressive and wheelchair bound camp several years ago. So I take them all with a grain of salt.
And when studies are given grants to study the prevalence of falls in the MS community, I kind of wonder about the seriousness of the researchers. Let's take a group of people prone to balance issues, sensory issues, and feelings of not knowing where their limbs are in relation to anything else in the world and see if they fall down. A lot. Sounds like a prank more than a study. Wish I could get my hands on some grant money for a study or two. I'd find a way to work kiwi mojitos and white sand beaches into it for sure. And I would sacrifice myself for science and offer to be a guinea pig. (As the parameters of this study have not been set, please do not send applications at this time. Donations? Why not?)
Its a fun game of extremes I often play. Something new will pop its head up and present limitless rabbit holes of research and articles to follow. And for a second I feel a glimmer of, wait , what's that? Could it be, hope? And after weeks of excavating and spelunking I come up for air and realize, no. It was just the triple cream brie smooth talking, and now its gone. And all that's really left is a host of poisons that may or may not help me before they kill me. And the cheese rind.
But since we've come back to reality, we need groceries, and obviously more cheese. So then it's head down and back to the daily grind until the next shiny object appears. Tune in next week for More of What Is Not Here That You Hoped Was and Most Likely Never Will Be. Amen.
Generally when I start these meandering journeys I often get inspiration from Wheel Chair Kamikaze
Also when I come across something I don't quite understand, like most of it, I think 'I'll just wait until Mark explains it.' Sometimes it helps. Or I think it does and that's enough for me to go running to my neurologist asking for her thoughts secretly hoping it will earn me points in the 'sure her brain is atrophying, but she's still really sharp' department. I don't know if it works or she silently adds points to my EDSS rating with each new discovery. Ignorance is bliss. I'm happy.
I am actually planning on picking her brain, ha ha, seems only fair, on the discovery of a lymphatic network in the brain. Maybe she'll write back its old news, or junk news, or only pertains to mice and we're back to square one and mai tais. Or maybe the discovery could shed light on how rogue immune cells get to the brain to attack the myelin. Not a porous blood brain barrier but a secret backdoor through the lymphatic system. But I still have my skepticism (I have a lifetime supply) Are the cells there to destroy the myelin, which has been the current thinking ,or to clean up what is already falling apart? Which has been bandied around for a little bit. But since there is an Internet and no answer that has produced a cure, anything is fair game in my book. Or blog.
Yeah. Me neither. No flowers or big delivery of any kind. We still get mail and Shane goes to work. Seems kind of pointless to me. Oh, and just for the record, last month was national MS awareness month. A whole month of nothing special. While I'm on the topic, apparently the color code for MS is ORANGE. Why not black? I look good in black. No one looks good in orange. I guess all the other colors got taken first. Its funny, to me, to color code maladies. I'm sure no one else wanted orange. Get a group of MS supporters wearing their snazzy shirts together for a barbeque and guess what it looks like?
Oh, Look! The convicts are here to clean the park! Come on kids, time to go home.
Fortunately, the news feed Shane set up for me to monitor mouse deaths (aka drug trials) alerted me to this important fact. So now I can.... do what I normally do every day.
Since we are on the topic, I had my meeting with Dr.S yesterday. I remembered most of the things I wanted to ask her about so that was a good start. I do have her email, in case I forget something, but have not gotten into habit of sending her links with a 'did you see this article?' attached. That might create a difficult line to walk between Dr/patient and victim/stalker. I would have so many questions.
First off, she has heard of Terry Wahl's and her diet. Like me, she is skeptical of one person's diet change becoming a cure. Going from wheel-chair bound to ambulatory would require major nerve repair. As you age and/or disease progresses your body is less able to repair the damage and recoveries from relapses are less dramatic and just less in general. At least that is how the pathogenesis of MS has been observed so far. But since they do not know exactly why the damage happens in the first place, or the mechanisms by which they happen, I think there is room for lots of research and discoveries.
Just because something is not the result of a big expensive drug does not mean it didn't happen. So there is skepticism to be had all around. Most of the drugs out there are only about X% effective anyway for X% of patients (my statistic, so quote it loosely). Nothing has been found to reliably make a huge impact on a huge number of people yet. So they just keep coming up with new expensive drugs to treat, or kill a few, patients.
We discussed my particular state and what might be helpful. She did not give me a 'free massages for life' gift card, but she did recommend seeing one of the therapists there to help think through what lifestyle changes might be beneficial. So I might have another chance of winning a gift card.
I asked again about the exercise/gimpy legs correlation vs causation vs whatever. She said it was just time. I was due for it. Which would be great if I had a calendar and could plan. Wine tasting? Oh wait, my tongue is due to be numb that week. (That did happen and was one of the funkier episodes I've experienced) She said if there is a worsening that can be recovered from in an hour of quiet time, the activity is fine to do. If it takes a day or more, I might want to rethink what/how I'm doing things.
An hour of quiet time? I told her that sounded heavenly. Along with impossible.
Make breakfast: rest an hour
Garden: rest an hour.
Make lunch: rest an hour
Costco shopping: rest an hour.
Make dinner: rest an hour.
It probably didn't help that the night before my appointment Malachi was up and restless from 2am-7:30am and the whole house was woken up to smoke alarms going off when Kateri made hashbrowns for him at 5:40. Including Fiona, who then refused to nap until I got home from my appointment at 12:00. So lots of opportunities for quiet restful time in a day. Obviously.
I brought up all the new 'breakthrough research' reported in the headlines in the past couple months. Again, it was, 'Its all very interesting. We'll see how things go from here. It really comes down to trials and results. With humans. And years, and more years of trials.'
I brought up the micro biome, or whatever its called, research being done and it is still 'we're not really sure, but we're looking into it.' There is one trial specifically focusing on it, but it requires being on a particular drug, Tecfidera, which in addition to helping drugs get across the blood brain barrier, also allows non-drugs and potentially fatal particles to get to the brain. So not super exciting. Given that Fiona is still nursing Dr. S would not, nor would I ,be comfortable with any of the 2nd line drugs, which mess with the blood brain barrier and cross into breast milk. So it would be back to the older 1st line drugs. Meaning needles. Lots of needles. And scar tissue. And I'm not sure I could even get a needle in anywhere anymore due to said scar tissue. If I knew it might help, I might try and work them in, but after flunking the last two I'm not so certain they are worth it.
For now we decided to wait another 6 months, then regroup and see where Fiona is on the nursing timeline and I'll keep studying up on the therapies she would recommend Tysabri, Gilenya, or Tecfidera. I don't know why she kept leaving out massages, like it wasn't even an option. I think I might just go to Canada and get one. I hear you don't even need a prescription up there.
So there it is. Just in time for National MS Awareness Day. Now you are painfully aware how difficult getting a massage out of your neurologist really is. Thankfully, Shane is not a neurologist.