Walking on sunshine

I’ve been using a wheelchair for the most recent fifteen years of my life. But curiously I’m always walking in my dreams!
 
In them I’m usually not at home. I’m usually walking around a building, a shopping center, a store. Even outside.
 
And it is only recently that I’ve started to occasionally notice that I’m holding a cane or crutch in my dreams. But I am still walking. 
 
When They Were Young
 
In my dreamscape, the wheelchair does not ever appear. It seems my brain knows it does not belong.(I wonder if someone who has been confined to a chair since birth appears moving that way in their dreams.)
 
I used to be proud of my long legs; now they get in the way a lot of the time. Still, I would not like to have them removed, so that’s something. Even as inconvenient as they can be, there’s always the chance that I’ll need them someday.
 
But I also used to consider my legs to be fat. I was ashamed that their was no space showing between my thighs, for example. Now that I’ve lost so much muscle, they’re definitely skinny, but not in a good way.  Be careful what you wish for!
 
Is Dreaming Visualization?
 
I’ve been reading about sports visualization. And I wonder if I can take advantage of the finding that your body experiences muscle movement whether it’s real or imagined. To rehearse what it would be like to walk again.
 
Since the brain does not distinguish between real and imagined actions (see here), does it count when I’m sleeping? Am I getting the experience of walking in my dreams? 
 
There are also new products that potentially would allow me to be more mobile, like using a lifeglider, for example.  Yes, I definitely would need legs for this!
 
Now
 
These days I spend most of my time indoors in a wheelchair.  I am reluctant to get overheated, to spend a lot of time outside in the sun, so I stay inside like a housebound vampire.
 
It is not really a hardship for me because I like to spend time alone, to think and read and learn. I enjoy research and I don’t miss hiking or yoga or Tai Chi outside. I don’t miss it but I wish I had the choice to go outside at a moments notice if I wanted to.
 
At this point I understand that I may never walk again. Unless a cure is found, or even a way to reverse the damage done to my myelin. 
 
But then again I see no harm in adding guided visualization about walking to my daily routine. 🙂
 
What I’ve learned this week 
  • Objects, as coins, tools, etc., used by a teacher to illustrate everyday living are called Realia plural noun [ree-ey-lee-uh, -al-ee-uh, rey-ah-lee-uh] 
  • Muscle memory is real
  • Get free online classes from prestigious schools like Yale 
  • One recommended place to get your prescription eyeglasses online for $15ish

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Stress and my “clutter threshold”

“Accept the limitations of the space you have, and declutter enough that your stuff fits comfortably in that space.”
–Dana White, Decluttering At The Speed Of Life
 
I imagine most people have already figured this out by adulthood. And I wouldn’t consider myself slow. But as a kid, I never paid attention to how things stayed clean.
 
I adjust too easily to an imperfect situation: “…grabbing a coffee cup from the top rack of the dishwasher or a pair of socks from the pile on the couch doesn’t feel the least bit awkward, so the visible pile doesn’t register as a problem.”
 
Where did all this stuff come from
 
I figured out laundry in college as I needed clean clothes and bedding, for example. And I learned to keep the floor clean because, like Dana White points out, “if your floors are clean, everyone thinks your house is clean.
 
I pretty much always lived alone and kept my home clean enough for visitors. But when I got married suddenly we had two households of stuff in one house. And I never realized how to be disciplined about decluttering. Everything seemed useful!
 
Now that we both have mobility issues, it’s become obvious that we can’t move freely around this much stuff anymore. The aforementioned Dana White has written extensively about this. Luckily, she speaks to me.
 
Clutter threshold<
 
Dana talks about how we all have our own “clutter threshold,” the point at which all the stuff we own has become overwhelming. That if we live above it, our space is out of control and hard to keep clean, but if we can declutter down below it, our space at least stays manageable.
 
That’s where I’m aiming now. Decluttering is getting rid of things we don’t need. But the point of decluttering is to keep stuff. It isn’t to get rid of things we want to keep; it’s to identify those things and then to make space to enjoy those things.
 
Clutter is one of my triggers 
 
It’s also about the stress I feel living in an out-of-control environment.
 
A 2013 study showed that while both positive (like a wedding or the birth of a new child) and negative (like living over my clutter threshold) stress can impact the course of our MS, the negative stress can actually trigger disease activity.
 
 
So I’m working on changing my mind-set, my ultimate goal for my home. I aim to have less stress by having less stuff.
 
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Today was a four

A post from several years ago, just as relevant today. :(On a scale between 1 and 10, I’d give today a four. It’s not really its fault, but it wasn’t a great day.
 
Morning
 
It started out good, with my neighbor dropping off a newspaper article from the morning’s S.F. Chronicle.
 
It reports that several gene “regions” have been discovered to be probably linked to an increased risk of having M.S. The results of several studies appear in three papers published in several leading scientific journals and posted online.
 
Apparently new experiments have reconfirmed the role of one gene in increasing the risk of MS, and have identified two others that may contribute to the disease.  Doesn’t help me at the moment, I’ve already got it. But still good. Baby steps.
 
Mid-morning
 
Then I sat down to work at my computer, grateful that I can still do my work full time from home. (I have posted about my telework situation here)
 
But soon started dreading tomorrow because I have to go into the office for meetings with out-of-town colleagues.  And just getting down there exhausts me.
 
Afternoon
 
In the afternoon, I attempted yet again to get up to the pool on my spiffy new scooter.  But yet again I didn’t swim.  Today there were lessons going on, and no open lanes for slow swimmers like me.  
 
The scooter makes it up there just fine, but it was frustrating to not get in the water.  And if I had more stamina, I might have waited around to see if a lane opened up.
 
Fatigue sucks.  I know that going swimming regularly might help my stamina, but today I just came immediately back and took a nap instead, totally exhausted from just the exertion required to get there.  So you see?  Four. Sigh
 
Originally posted on 07.30.07. Updated re-post.
 
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My spastic leg

I sleep on my side. When I wake up in the morning and I try to rollover and get out of bed, my right leg seems frozen in the bent mode of my side sleep. I have to press on my upper thigh multiple times to try to get the nerves to “remember” to relax and let me straighten my leg. I assume this is my spasticity, hence my spastic leg.
 
Spasticity refers to the episodes of muscle stiffness and involuntary contractions in those of us with damaged central nervous systems. According to the MS Society,“Spasticity occurs as a result of an imbalance between the excitatory and inhibitory signals from the brain and/or spinal cord.” It’s presentation and severity varies widely across individuals and even in the same person over time. It is estimated that 85% of MSers will experience it over the course of this disease.
 
Strictly speaking, it can be hard to distinguish spasticity from other symptoms in MS. A sensation of stiffness in the legs may be spasticity, but also might be from abnormal sensations or from the weakness associated with MS. For the most part, it is identified based on self-reported symptoms, so for our purposes, it kind of doesn’t matter why.
 
How it may begin
 
In RRMS (relasing-remitting MS) it tends to be fairly mild in the early years. But spasticity is generally defined as being “velocity dependent”, which means that when a quick stretch is applied to a muscle, the resistance is increased.  So even if you don’t yet feel it, it is there.
 
A few years after I was diagnosed I started to notice that I had way overresponsive jerking reactions to stubbing my toe or being tickled, for example.  I chalked it up to my MS and laughed it off as proof that I was “sensitive.” And even when I learned that this “hyperreflexia” was often a precursor to full-blown spasticity, I just thought it was a manageable inconvenience.
 
But what I’ve learned for this post is that if ignored, spasticity can lead to limbs frozen in place, for example, or even just negatively affect our quality of life with increasingly annoying symptoms.  
 
Treatments
 
Physical therapists know that the tighter a muscle is, the more spastic it becomes. Experts will tell you that one of the first things to try to reduce muscle tightness and soreness is with stretching.  You could try yoga and/or other range-of-motion exercises (see manual below for examples).
 
Besides exercise, there are medications that can be prescribed like Baclofen or Diazepam , herbal remedies for muscle spasm or relaxation, and even medical marijuana.
 
And while both MSers and medical professionals may be reluctant to try more invasive treatments such as local injections of Botox or intrathecal baclofen therapy–ITB, a subcutaneously placed infusion pump–they can be effective and well tolerated. A referral to a spasticity clinic with experience in the use of these therapies may broaden your options.
 
For my spastic leg, I now sleep on my back and have started doing bed exercises before I go to sleep and again before getting up.  Baby steps!
 
See also
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MSers: Resist brain atrophy

Cerebral atrophy is the progressive loss of brain cells, or neurons, leading to decreased brain size.  There are two types: generalized atrophy refers to neuron loss throughout the entire brain, and focalized atrophy refers to neuron loss in a specific brain region. 
 
Let me reiterate: the generalized type of brain atrophy is considered to be overall shrinkage, a natural part of aging. So we’ve already got that to look forward to.  And whether this will continue to be the considered natural course of aging is an issue for researchers. 
 
For this post I’m more concerned with focalized brain atrophy which happens earlier and more rapidly in MSers. Which in turn may affect our symptoms and other brain function, as the location of lost brain cells could lead to more and more neurological problems.
 
It is my understanding that resisting brain atrophy comes down to making new neurons, protecting existing neurons, and reinforcing our existing neural pathways as much as possible before our myelin is damaged beyond repair.
 
Protect Old Neurons
 
There are a few generally acknowledged ways to protect both new and existing neurons:
 
  1. Get B-vitamins. Any kind but especially B-12. Take supplements if necessary. Low levels have been shown to accelerate brain atrophy, so eat at least the Recommended Daily Allowance.
  2. Sleep a full night. Strive for a large chunk of uninterrupted sleep. I try to wake up naturally, without an alarm clock. (One study actually shows that it is optimal not to go over 8 hours!). And take a nap every day—no more than 20 minutes.
  3. Practice regular, sustained exercise. Even just a regular walk around the block. One study found it was vital to participate in a sustained way. I’m starting to view this as creating and reinforcing a neural pathway.
  4. Eat fresh fruits and vegetables. Lots of leafy greens and bright, jewel-colored produce. The brighter the color the better.
Make New Neurons
 
There is a lot of research published online about how to continue to activate the growth of neurons.  Google “grow neurons” to get ideas.
 
Seek out new and exciting experiences. Challenge yourself to try things. Learningnew and demanding skills” enhances cognitive function, which suggests to me new neurons. 
 
And although sustained stress is bad for the brain and body, the stress of regular exercise is good for the brain.  It may even fend off atrophy.  Again, practice regular exercise. Do it for your neurons.
 
So learn a new language, take up a musical instrument, attend lectures and classes, read.
 
Reinforce Pathways
 
And while learning new things and exposing yourself to new and different experiences build neurons, repeated acts seem to reinforce (etch deeper?) existing neural pathways.
 
I’ve heard it described like repeatedly cutting across your lawn, walking in your earlier footsteps, eventually etching a pathway.
 
As an example, I started sitting in a full lotus position when I was a kid, for no particular reason that I can remember.  I continued to sit this way throughout my life and even today, as mobility-challenged as I am now, I am freakishly flexible in this one way.
 
And while my friends and I often call this “muscle memory,” I am equally convinced this is an example of a well-established neural pathway. So my childhood piano, swimming, and Spanish all represent older neural pathways that I can reinforce.

Keep fighting
 
One of the things our DMTs (Disease-Modifying Treatments) aim to do is slow brain atrophy. So here’s another reason to stay on them.
 
Yearly measurements of our individual brain atrophy may become part of the MSers annual checkups. Yet more proof that this is a concern for our doctors.
 
Currently, there is no recognized way to reverse brain atrophy. So once it is gone, it is gone. Do your best to resist!
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If you need short-term nursing

I urge you to check out the medical facilities and services around you that you can go use for a short stay when experiencing an exacerbation.

If and when you have an exacerbation (acute, short-term) and need additional help, you may not want to place the extra burden on your loved ones.  Hiring a visiting nurse or relocating to a dedicated facility for a short stay may take some weight off family caregivers.
 
NOTE: I have never had an exacerbation so severe I needed to go to the hospital (and I've been dealing with MS a looooong time). I've never been in this position, but I do know others who have.  So take this info as suggestions, brainstorming if you will.
 
Visiting Nurses
 
Recently a friend had hernia surgery. He and his doctor decided that, rather than staying at the hospital or going to a rehab center, he would go home and have a visiting nurse come every few days to check his vitals and change the dressing on his wound. In addition, a visiting physical therapist came once-a-week.
 
Something like this might serve us when in the throes of an exacerbation.  You could ask your doctor or the hospital to order it for you, or you may find a caregiver agency.  Again, the time to compare is before you need it. 
 
Also note: Many home care agencies offer hourly nursing services up to 24/7 live-in home health aide support as needed. 
 
Assisted Living
 
An assisted living residence is like an apartment with staff that can visit to provide you personal care support services such as meals, medication management, bathing, dressing and transportation, using the phone, and even shopping. But it also has it's own cooking facilities and it's own bathroom and some even allow pets.
 
It can be a long-term care option, so you may not be able to go at a moment's notice, like for an exacerbation, but more and more of these facilities do offer short-term stays as well.  It's worth a call.
 
An assisted living community can provide both privacy and companionship.
 
Nursing Homes
 
Unlike assisted living facilities, nursing homes provide more intensive, 24/7 supervised medical care in a fully staffed and monitored facility.
 
Short-term stay is already generally expected for those who have been hospitalized due to injury or illness and require supervised care while recovering.  Call and ask if they allow you to come in on your own.
 
Plan Ahead
 
I urge you to check out the medical facilities and services around you that you can go use for a short stay when experiencing an exacerbation. Before you need them, just in case. Discuss with your family the services you’ll need and might want. 
 
It can take time to research and find ones you like, so doing it now, in a low-stress way, can make the decision to go so much easier. You will know what to expect.
 
Editor's note: Details have been changed to protect user privacy.
 
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Underwear and pills, oh my!

When I was first diagnosed, ATMs existed and there were 24-hour grocery stores. I remember thinking that of all the times in history to be struck by this disease, this was the best.

Underwear-and-pills[1]
Random thoughts during recent morning ablutions. 🙂
 
One thing I was happy about when I was first diagnosed was that ATMs existed and there were 24-hour grocery stores. Soon we were becoming more comfortable with online Bill Pay and shopping online.  Tech was steadily improving and newer services were being invented. I remember thinking that of all the times in history to be struck by this disease, this was the best.
 
I applaud manufacturers making easy open tabs on cans, resealable bags on grocery items, even instant coffee and instant oatmeal. You can even find “instant” mashed potatoes in the freezer section made out of “riced” cauliflower which tastes good.
 
Pill Bottles
 
I recently bought a small bottle of allergy medicine (Benedryl).  It had an up caret  ∧ on the bottle and a down caret ∨ on the lid.  In order to open the bottle, you had to line up the two, then pop the lid open. I used my teeth and every once in awhile instead of behaving, the whole open bottle would go flying across the room spilling tiny, bright pink pills all over the tile floor. Which I then had to pick up FROM MY WHEELCHAIR!
 
Another time I was starting a new MS med to be taken orally.  I was so excited to not have to give myself shots anymore.  Then I discovered that the new pills were coming to me in a bubble pack; I had to pop one out each day, or pop out a bunch (while watching TV, for example) and store them in a used pill bottle for safe keeping.
 
My coordination has slowly gotten worse over all my years with this disease.  I have not been able to handwrite for about fifteen years; I use my mouse with my left hand and type with one finger.  Why, I asked my doc–and anyone else who listened–would the manufacturer package these pills in a way that makes it so hard for MS users to open? Luckily, they switched to a regular bottle in the new year.
 
I also have begun to notice pill bottle labels printed in larger type (is braille being used too?), which I assume is helpful for those with limited vision. I believe you could arrange with your pharmacist.
 
Lid colors
 
I have graduated to a twice-a-day pill dispenser (A friend’s husband said to her, “I don’t think I need that yet. It’s for old people!”  She said, “Yeah, so?” as she pulled her own pill dispenser out of the drawer with her vitamins and calcium.) When I think pill dispenser, I think convenience.
 
I get my prescription bottles with all different colored caps. As they seem to be standardized, I have been able to swap out my plain white medication bottle caps. Color makes me happy!
 
I confess that I take enough different pills that I started switching out all the caps on new bottles of things I need to take in the a.m. to blue caps, and things I need to take at night to magenta, and things I need to take both times to white caps. 
 
When I’m refilling my weekly pill dispenser (I do it every Saturday a.m) it makes it quicker to not have to read the label each time. Just put items in white capped bottles in both sides of the dispenser, items in blue capped bottles go in the a.m. side, and items in magenta capped bottles go in the p.m. side.
 
Incontinence Products
 
Before I needed to wear them, a friend and I joked that since these were only made in white, but I only wore black underwear, we should get the patent on colored, disposable underwear for when our generation started to need them. Oh ha-ha, so funny! (You and I both know they are more commonly known as Adult Diapers, but I hate that and since it is my blog, I will be using “disposables”.)
 
Flash forward to today, where lavender and peach colored disposables are common and I just saw Depend® offering a limited edition of black disposables.  Well, we had our chance.
 
So I applaud manufacturers for making incontinence underwear in colors. Also making incontinence pads, which are more substantial then menstrual pads and made to hold urine. 
 
I would encourage more standardized sizes and absorbency levels (see description of Tranquility products). When the store is out of our regular “product” don’t make it hard for us to find a suitable replacement. Standing around the shelves trying to read each different package can be mortifying. And if you have a caretaker doing it, I think it’s worse.
 
Just things that make me go hmmm…
 
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Would you rather?

Just two years after diagnosis, my friend has died. Ovarian cancer. Kinda ironic because she was the least girly-girl I knew, so this seemed like a desperate attempt by her organs to gain her attention.

image from lorna.typepad.comJust two years after diagnosis, my friend has died. Ovarian cancer. Kinda ironic because she was the least girly-girl I knew (when she got married she wore blue boxer shorts and her combat boots under her frilly white, traditional wedding dress), so this seemed like a desperate attempt by her organs to gain her attention. In this post I’ll call her D.  (Of late, her favorite online handle was DeathByChemo so I guess she expected this on some level.)
 
Both of us never had kids, but she did tell me once that while she couldn’t see herself having children, she also couldn’t see herself getting old without adult children. At her memorial, her husband explained that she had discovered that she loved volunteering at the local animal shelter, and that the strays they had adopted had become their kids. That makes sense.
 
The Beginning
I met her in the early nineties when we found ourselves working in the same document delivery company, catering to professional researchers in the SF bay area and around the rest of the country. It was a pretty low-level job but with ties to local university libraries at Stanford and U.C. Berkeley, for example, and highly educated colleagues from the area.  It led to some of the strongest, wittiest friendships I have in my life.  It led to our “posse”.
 
By the time I met her I had already been given the MS diagnosis.  While I was very open about it, I did not show any symptoms. And like I understood from my first neurologist, I was probably going to be “out of the woods” in another year or two. We considered it, then, for the most part, disregarded it.
 
The Middle
Once we went car camping (kamping with a “k” because you go to someplace like KOA, get an assigned space, pitch your tent—if you’re using one, not naming names!—by your car and share a common restroom with other campers). We scoffed at this type of camping but also recognized that we were too lazy (was this the beginning of my fatigue?) to do anything more.
 
When my torso unexpectedly went numb (now known as the MS Hug), we decided to take advantage of the numbness and went to get my belly button pierced, giggling all the way.  We started an imaginary rock band, envisioning that we wouldn’t actually play instruments, but could spread rumors of our existence ala SpinalTap and took to calling ourselves “The Übergrrls”.  The name sticks to this day.
 
Eventually, most of us moved on from that job and almost all of us married.  But we still kept up with each other, adding other girls (and a few boys) to our posse as we went.
 
When I began to show MS symptoms exacerbated by the heat, I moved to a cooler area, the California coast. Another moved with her husband (and cats) to Japan, then to Berlin.  D. and her husband eventually moved down to the central valley section of California where she had grown up.
 
Staying Connected on Social Media
In late 2015, D. started having pain from blood clots that were developing in her legs. She went to her doctor and was diagnosed with ovarian cancer.  The doctors congratulated themselves for “catching it early,” rushed her in for surgery and felt it went very well.  The plan was that for a while after D. would go for chemo and radiation therapy, then it would be over. We’d all tell stories about it into our old age. We exhaled and pretty much went back to our usual routine.  
 
We had already set up a group in Skype with everyone’s email I called “The Girls”  and were able to see and kvetch with each other simultaneously and regularly. 
 
Later, as that got harder for D., we discovered the free messaging app, WhatsApp, where we once again arranged a group where we could post whenever and then whoever else was around could simply chime in. Even in Berlin, with its nine-hour time difference, we all felt connected.
 
Would You Rather?
Then came more bad news: the cancer was in her liver, the lesions inoperable (tumors too deep). She decided she wanted to keep fighting; that meant more chemo. She developed painful neuropathy in her legs and arms.
 
Recently she was bemoaning the lack of dexterity she was now experiencing in her hands, presumably from the chemo. Still, she said, I’d prefer ovarian cancer to MS. 
D.:  The chemo that breast cancer patients get often causes lymphedema. That’s one side effect I don’t have to deal with with the drugs that I’m on
me:  its wry-funny how we view other things as worse then what we have
me:  i don’t have pain which a lot of MSers have
me:  but they might still be able to walk
D.:  I know. Lymphedema is awful. It’s like having a beach ball of fat hanging off of you that’s not even really fat and you totally didn’t deserve it. But it looks like fat.
me:  so would i trade?
D.:  I don’t give a f@#$ about being bald. But apparently there a class action lawsuits filed by breast cancer pussies because chemo made them bald. Breast cancer has a 90% survival rate. Ovarian cancer has a 90% death rate. And the breasties are whining about hair loss.
D.:  Good question. Walk or pain? I often ask myself if I could get something back would it be my hands or my legs. I would love to feel runners high again. I would also like to be able to cut my toenails, pick my nose, and sign my name to a paycheck.
me:  i take living bald to dying with hair hands down
D.:  Yeah that’s not even a close one. And I take ovarian cancer over MS. You’re going to outlive me, but I had 49 years of perfectly normal walking and nose picking.
D.:  Ovarian cancer is [unintelligible] Stupid Siri. But to be fair I’m probably still mumbling from the Dilaudid
me:  thank god i still have nose picking
me:  😉
D.:  Braggart
 
 
DAweddingdress[1]
 
 
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MSer in a heat wave

Well, “heat wave” is a bit of a misnomer since the majority of MSers are heat sensitive, or even downright heat intolerant, so really any kind of heat can be the impetus for our own heat waves. And raised here in the SF Bay Area, I tend to be a bit Goldilocks anyway, preferring things to be not-too-hot, not-too-cold, but just right.
 
At the end of August, when we get a sudden spike of hot weather like we sometime do, we often refer to it as an Indian Summer. (I have come to learn that there is an actual definition of this in the Farmer’s Almanac, and we are not using it properly!).
 
Many MSers experience a temporary worsening of symptoms when the weather is very hot, or really anytime their core body temperature rises even one-quarter of a degree. In fact, an elevated temperature even impairs the ability of healthy nerves to conduct electrical impulses.
 
It can be especially hard for some of us because we may not sweat properly!  (Scientists call the study of this “thermoregulatory dysfunction in MS” or “temperature dysregulation“. )
 
In any case, you all know the basics: drink lots of water and stay hydrated, seek air conditioning, wear loose clothing, don’t run appliances like the dish washer or the washing machine at high peak times.
 
Here are more tips:
 
  • Drink water regularly, even before you get thirsty. Maybe try to drink an 8oz. glass of plain water each hour.  (And if you find you are staying away from liquids because you have bladder problems, be sure to mention that to your doctor so the two of you can come up with a solution.)

  • Eat cold, small meals that don’t need to be cooked. Consider using the microwave, the toaster oven or grill outside if you need to heat food.

  • Snack on frozen grapes or blueberries; stock-up on popsicles.  (When you have the energy, you can even make your own popsicles, using papercups and fortifying them with fresh fruit and herbs like ginger. )

  • Keep your curtains closed and unplug all unneeded electronics during the day to keep house cooler.  Consider having a cold room set up in a cooler part of the house, like a basement.

  • Place trays of ice in front of, or tie paper strands to, a stationary fan. Carry small hand held fan with you and use often. (You can also go to a community cooling center. Check with your local utility.)

  • Wear lighter colors, breathable shoes, a cooling vest if needed.  Wear wet swimsuit outside when doing yard work or gardening. As soon as suit dries, it is time to come inside. (Make sure to wear sunscreen for your skin when gardening and any other time you’re outside)

  • Take siestas during the hottest part of day. Then take a late night stroll and enjoy the nights coolness.

  • Make sure your car’s air conditioning is working. Tint your car windows with tint product (get a tint with heat reduction as its main goal). Consider insulating car floor. 

  • Freeze sheets before bed.  Try buckwheat pillow. Use thinnest sheets on bed as possible. Consider sleeping naked.

  • If you don’t have the energy to do any of this right now, get a cold drink and a washcloth to wet, then fill your bathtub or kiddie pool or even just a bucket with cold water for your feet, and soak. 
Finally, some people with MS notice that symptoms become worse in cold weather too. It is generally recommended that people with MS who are sensitive to temperature try to avoid extremes of either hot or cold.
 
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Our chronic inflammation

Inflammation is one of the body’s responses to injury. It is considered acute (temporary), when you get hurt in sports or have an infection, but chronic (persistent) in a disease like MS.

image from lorna.typepad.comInflammation is a "hot" topic right now, pun intended. It's one of the body's responses to injury.  It is considered acute (temporary and innate), when you get hurt playing sports or have an infection, but chronic (long-term, persistent and adaptive) in a disease like MS. 
 
Inflammation can become chronic when it stops being an acute response and continues on as a constant low-level physiological response.  But the chronic form can also result from, in our case, an autoimmune response when our immune systems mistakenly attack healthy tissue. I rarely get sick and, in fact, tell people I never get a flu shot because my immune system doesn't need any help! 
 
(Momentary digression: Scientists may even specialize in neuroinflammation, inflammation specific to nerve tissue!)
 
How it presents in MS 
 
Researchers believe that MS begins with inflammation, that infection-fighting white blood cells are triggered by some unknown force to enter the central nervous system (CNS) and attack the nerve cells which results in the inflammatory response.
 
The attacking white blood cells damage the myelin that protects nerve fibers.  Imagine a damaged electrical cord with the sheath ripped open and the wires exposed. This process in the body is called demyelination and wherever it occurs in the brain affects what kind of symptoms the MSer might experience.
 
In the early stages, an MSer will usually have flare-ups (called exacerbations or relapses) then experience remissions with no symptoms. Hence the term Relapsing-Remitting MS (RRMS). During this time, the nerves will attempt to repair themselves, and may even form new pathways to get around the damaged nerve cells.
 
Once a diagnosis of multiple sclerosis has been made, disease-modifying drugs (DMD) are often prescribed. One of the things the medication may be used for is to reduce inflammation in the brain.  
 
  "In multiple sclerosis (MS), there is good evidence that the inflammatory reaction mediated through adaptive immune responses initiates the disease and drives disease progression together with additional age- and disease-burden-related amplifications factors. Thus, anti-inflammatory or immunomodulatory treatments are effective at least in the early stages of the disease."
 
Who says it is bad?
 
According to the book Neuroinflammation: New Insights into Beneficial and Detrimental Functions,  "(t)here are three levels of inflammation: activation of microglia in response to tissue injury, vascular inflammation,…and blood–brain barrier damage…"  So there's that.
 
On team Detrimental, during a period of neuroinflammation in MS, attacking white blood cells kill glial cells: "Glial cells surround nerve cells and provide support and insulation between them. They keep nerve cells healthy and produce new myelin when it is damaged…" As more and more glial cells are killed, the body becomes less able to keep up with myelin repair. So some of the new research for an MS cure is focused on transporting new glial cells to the site of myelin damage to help encourage rebuilding.
 
So too, in an attack, increases in many different inflammatory chemicals occur.  These inflammatory chemicals may weaken the blood-brain-barrier, which normally tries to block inflammation from getting into the brain. Once this barrier is penetrated, inflammatory chemicals can enter the brain with greater ease.  
 
As far as team Beneficial, "inflammatory responses in brain lesions may be…instrumental in removing tissue debris and in facilitating repair processes."
 
Researchers have just started to discover other beneficial functions of neuroinflammation in certain diseases. So stay tuned.
 
Ways to test
 
If you want to test for the existence of chronic inflammation in your brain, know that there isn’t a "single silver bullet test" for chronic inflammation. But there are a series of tests that might give you an idea of the levels of inflammation in your body.

The main test for chronic inflammation is a blood test called C-Reactive Protein, or CRP.

Another test for chronic inflammation is an inflammatory marker test, the IL-6.

Other common inflammatory markers you can ask your doctor to test for:

– Elevated High Sensitivity C-Reactive Protein (HS-CRP)
– SED Rate
– High levels of Homocysteine
– Elevated Ferritin in the blood
– Elevated HDL
– Elevated Monocytes can be a secondary indicator of inflammation
– Elevated Blood Glucose is a leading indicator of inflammation
 
What else can I do 
 
Ultimately, many of the questions concerning the causes and effects of chronic inflammation have yet to be proven. What you can do, though, is to avoid certain things that cause inflammation and are already proven unhealthy, like smoking or eating excessive refined white sugar.
 
But one of the things we do know now is that "(t)he gut, including the small and large intestine, is the largest immune organ in mammals, including people." Read more here.
 
And according to a recent press release by the National MS Society,"an international team…describes a pathway by which substances in the diet and bacteria in the gut can act to suppress inflammation in the brain of mice with MS-like disease, and also show evidence that this pathway exists in people with MS."  The MS Society concludes "This [study] opens up an area that’s largely been unknown until now: how the gut controls brain inflammation.”
 
So it seems like, at the very least, we should try to keep our guts happy.  :)
 
I found articles that counseled that "by eating a diet rich in fresh fruits and vegetables, whole grains, nuts and seeds, lean proteins, and low-fat dairy, you can reduce inflammation in your body naturally."
 
Also, "(c)arbohydrates provide glucose, which is your body's main dietary source of energy…Low-glycemic carbs, which have a mild impact on your blood sugar levels, can help reduce inflammation…High-glycemic carbs, on the other hand, can cause blood sugar irregularities and trigger or worsen inflammatory responses."
 
In the end, I think that if you want to reduce inflammation in your whole body (including your brain), you should make changes to what and how you eat.
  1. Replace refined foods like sugary breakfast cereals with low-glycemic foods like steel-cut oats
  2. Limit dried fruits and canned fruit stored in heavy syrup that are high-glycemic, choose whole, fresh fruits more often
  3. Avoid processed meats, high-fat cheeses, stick margarine, whole milk and commercially-prepared cookies, pastries and crackers.
  4. Try to regularly eat omega-3 fatty acids (prevalent in coldwater fish, such as salmon and mackerel; flaxseeds; and walnuts).
  5. Drink green tea and 1-2 glasses red wine daily.
  6. Take other supplements as you like (Evidence suggests that inflammatory chemicals can be inhibited by natural substances, including resveratrol, St. John’s Wort, fish oil, vitamin D, and alpha lipoic acid).
 
"Aim for balanced meals and snacks that emphasize nutritious foods. When you do indulge in refined grains, sweets or fatty foods, stick to modest portions."  Read whole article here.
 
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