“People with disabilities are often better at coping with emergencies than others; living with MS every day teaches us how to handle the unexpected.”
–The National MS Society
I am watching coverage of the latest hurricane. Heartsick, I can only imagine what it feels like to lose pieces of your life to disaster.
Sadly, MSers are better able to emotionally handle the unexpected. Our disease kinda makes us experts. But equally, the impact on our physical needs can be “compounded by factors such as reliance on electrical power…(and) accessible transportation…which can be compromised in emergency situations.”
Now I don’t live on the east coast, but I do live in earthquake country. And while I have never had to evacuate, these are some things I imagine would make bugging out less stressful.
First, plan escape routes at your home and office. Anywhere, occasionally stop and ask yourself “Right now, if I had to get out, how would I?” You’ve heard it said, the first time you try out your escape plans shouldn’t be right as you need them.
Having a go-bag for any type of emergency means one less thing you have to think about in the clutch. Pack clothes for a 72-hour bug-out and keep by the front door or in the car.
Also include enough food and water to last you and your pets for at least 72 hours. Include a can opener and any utensils you might need.
We MSers could also need extra meds(see ideas for amassing extra meds here) and incontinence products. Maybe have a manual wheelchair, an extra cane, spare batteries for an assistive device or hearing aids. Keep extras on hand. A good rule of thumb is to never let any regularly used supply of anything run below 25% .
Also have an emergency kit that contains first aid supplies (including aspirin in case of a heart attack, and maybe even some water purification tablets), a solar or hand-crank radio, a no-batteries-needed flashlight, soap, toothpaste, hand sanitizer, diapers (child and/or adult), several rolls of toilet paper, a camping knife, a roll of duct tape, and several plastic garbage bags.
Have a contact outside the disaster zone to act as a personal relay hub.
Finally, try to scan and save as much of your important paperwork ahead of time. Or at least take pictures of your docs that you can put on a cloud server as backup.
Research pet evacuationhere. Helpful things we can do ahead of time are to take pictures of our pets, and also to create written information on “feeding schedules, medical conditions and behavior issues along with the name and number of your veterinarian in case you have to board (them).”
If you are without power for an extended period, you may want a propane camping stove and something to cook in. There are plenty of ideas online about cooking when camping.
Lastly, when you are in it, remember to breathe. You can do this.
As the MS Society points out, you’re used to being in a certain environment and knowing how to manage there. A disaster can change that.
Consult your healthcare provider if you experience anxiety, irritability, depression, isolation or guilt, or any other mental or physical changes after surviving an ordeal.
“…i also have a stockpile. when I first started five years ago, the nurse told me to tell them I had three less pills then I actually did. This is what started me having the backstock…” –user feedback on Facebook
I’m no longer embarrassed by my chair; I kind of like it in the photo now. I’ve started collecting pictures of other people in wheelchairs like these as sample poses.
When I was first diagnosed and told I might eventually lose my ability to walk in the future, I was devastated. I couldn’t imagine anything more humiliating than being at belly-button level and wheeled around by others.
I immediately learned to ride a motorcycle, something I had wanted to do for years, figuring that I’d only have a short time left to do it. I even kept some old beat up shoes I could wear in the wheelchair to prove to others that I used to be able to walk.
Time went on, it didn’t appear likely to happen, so I eventually got rid of the motorcycle and threw those old shoes away. And when I did finally need a chair, I viewed it only as a necessary tool to get from A to B.
Strike a Pose
Now most of us like to have pictures to remind us of happy memories, or to prove that we did something and document who was there.
I am kinda stubborn and proud. I realized I’m no longer embarrassed by my chair; I kind of like it in the picture now. It marks time as “before” and “after”.
I started collecting pictures of people in wheelchairs. These are some of my thoughts.
Be Eye-Level ish
As much as possible, arrange everyone to be at the same height. Be a group!
It’s not contagious
The wheelchair is just another piece of furniture. You might want to ask permission first, but it is usually ok to touch it.
In a Selfie
A selfie forces you to be at eye-level, and you probably will be touching. I think it is friendlier if others lean on the chair or sit on it, or touch it in some other way.
Over the Shoulder
It may provide more interest in a picture to have us in poses other than straight-forward. I noticed a lot of pictures where the person in the wheelchair is looking back at the camera, over the shoulder.
Another interesting pose is sitting at an angle to the camera and having the camera only slightly above or below the eye level of the person in the wheelchair.
I want a group picture to show that I’m part of the group, not the centerpiece of it; not me with the group but the group with me in it.
Here at least others are leaning on chair. But why does the wheelchair have to be the centerpiece? Couldn’t she be closer to the end, say?
Posing is hard except for taking a selfie with friends.
Try to be about the same height with at least some of the others.
Ask one or more others to lean on the back of or sit on arms of wheelchair.
It’s friendlier if someone is touching you.
I need to be more of a director with pictures; I can’t assume others know what works.
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:
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.
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!
I’m an MSer. And I’m disabled. And I still work a full-time job. From home. Curious?
As Y2K started, although I was experiencing what I thought would be a temporary problem with one hand, I had just graduated college with a master’s degree in Library and Information Science. I felt like a right and proper grown-up!
But by Nov. 2002, the pharmaceutical company I had been working for was suddenly acquired by another company. They decided they didn’t need two librarians, so they laid me off and offered me severance pay until the end of the year.
I went to have a drink with a friend from grad school who worked at a legal start-up. Knowing about my MS, she wanted to help but also thought her small company could use me. So she urged me to talk to one of the founders. I had some experience in that field, so he offered me a job on the spot!
In the beginning HR was already aware of my MS so I never had to decide to disclose. I did a little research, and wrote a few articles. Soon I began taking on more responsibility for the structure of the site in what would become an extensive web portal of free information to explain law to lay-people.
Company Gets Bigger
Our company kept growing. I continued to go to HR every few years, after a doctor’s appointment, or when I had an allergic reaction to a new med, for example, to keep them apprised. I was always concerned when there was a staff turn-over that everyone was aware of my situation. I also began to work from home one day a week.
We had always provided a website with tons of free articles that explain legalese. But we now also help solo- and small law firms be more efficient, help them create websites, and provide advice about social media and marketing their services.
At one point I took over the user support “queues” that before had been farmed out to individual employees, each queue owned by a different employee, responsible for checking and replying to users. A thankless task not loved by anyone. But by offering to consolidate and take the whole thing over, I think I elevated my role in the organization.
In 2007 I started having trouble driving. So I asked for “reasonable accommodation” and transitioned to working from home full-time. It didn’t hurt that my new supervisor was stationed in Florida then. I keep regular work hours and call-in to attend all-hands meetings, for example.
Currently I act as the entire consumer service team, not to be confused with the (paying) customer service team. Since I am one of the longest-lasting original employees, I am very familiar with, and can thus quickly find, where something is that a user wants.
The situation works well for me. I work very well alone, but also am a team player when needed. Of course as history has shown, change happens. But I do feel comfortable with my employment for now. And this is just one example of how to do this.
Editor’s note: some of this has appeared in print before.
Gut bacteria is of growing interest today. It seems like all the hubbub lately is about our “microbiome.”
For MSers, scientists looking specifically at the microbes of MS patients found that we have different microbes than those with a healthy gut, and that dietary alterations can actuate microbial shifts almost overnight. OK, then.
Since increasing the intake of leafy greens is one of the common recommendations for a healthier diet for everyone, I’ll start here. Experts recommend getting at least 2 servings of leafy greens per week, others recommend even more often.
My venture begins
One of the ways I aim to increase my leafy greens intake is to eat salad for lunch. But one problem is that I’m not a salad person (you know, I.don’t.like.salads).
I have especially not been fond of the generic iceberg lettuce, tomato slice, shredded carrot, Italian dressing salads. Oh, and those croutons! Bland, unimaginative, eaten in a rush to get to the main course.
As an aside, I did recently come across the notion that iceberg lettuce has more food value than I thought. Learn more here.
I can use this info in the future. I will file the idea for later.
Happily for now, I have discovered, and now regularly buy, the salad kits from the grocery store produce aisle that contain pre-chopped leafy greens like romaine with kale and even broccoli stems, packages of dried cranberries with pumpkin seeds, or chunks of bacon with sunflower seeds, along with a light poppy seed or mustard dressing.
Instead of croutons
And since I am not a fan of croutons, I decided I could get my carbs by wrapping the salad in one of our left-over tortillas. This one happened to be whole wheat, and my salad wrap was born. For about $4.00 I get two lunches out of one salad kit and am so pleased with this result.
Another aside, a friend with fussy kids told me years ago that he found they would eat anything if it was wrapped in a tortilla. Just sayin’…
There are a lot of articles today reporting how helpful it is to take your work vacations. OK. But why should MSers? Vacations are exhausting, stressful, and drain resources and energy. The experience is difficult for even a healthy person.
I think it ultimately boils down to do we think we deserve it? Is it worth it to save money to do it? And why, when our health is so compromised and our meds are so expensive, should we keep doing it? How is it contributing to our health?
Relieves stress. Certainly work can be stressful. But there is also stress in considering what our future might hold or how our disease will progress. If you step away from your routines, even for a day, you will change your perspective and may discover new coping mechanisms.
Improves family bonding. As these people are part of your support network, it is important to make shared memories. In future, these can be recalled and thus “promote positive ties.”
Makes you sexier. Ha, just checking that you were still reading! But really, a recent study demonstrated that pictures of women with high levels of the stress hormone cortisol were rated as less attractive than women with low-levels.
So a vacation is a necessity. The goal is to calm yourself and make memories. The benefits to us outweigh the risks.
I have never been what you might call an avid traveler. I have never even fully appreciated packing up and going away on holiday. Until I am there. So consider the source.
Some of the most re-energizing breaks I’ve taken have been long weekends or the occasional week. Come to find out that is the latest recommendation: shorter and more frequent travels throughout a year. Like a week long vacation, coupled with 7 Fridays off sprinkled throughout the year for 3-day weekends.
And as one recent study suggested, even planning for a respite can increase your happiness. So this schedule could prolong my positive moods!
Traveling is hard. Staying in someplace different once you’ve traveled there is less so. I’ve often wondered if RVing would be a solution for me. It seems like it would ease the stress of staying in different surroundings.
Cruises seem like another solution. Again focusing on the staying in one lodging while letting the boat do the travelling. To me the issue here is money, but then again why would the expense for RVing, say, or camping (or glamping) be less prohibitive? (At the link below to MS Cruisers you can find info on making your cruise payment in installments!)
This reminds me of an even smaller commitment: “the Artist’s Date” with yourself as explained in the book The Artist’s Way. A weekly appointment for doing something fun TO YOU. Like going to a store that you’ve always wanted to explore, a local museum you’ve always wanted to check out, an unusual movie that you would go to see ‘if only’.
It turns out that taking regular breaks is mandatory for anybody’s healthy and happy life. Whether you have MS or not!
I love you, Dad! Happy Father’s Day and thanks for everything.
I believe that what we become depends on what our fathers teach us at odd moments, when they aren’t trying to teach us.”
– Umberto Eco
As the quote above says, I have become who I am partly because of how you and mom raised me, and also by what you have taught me by example. More than just contributing your genes, you shaped me. I learned that I was safe in my surroundings, how to be a companion, what to look for in a spouse.
In our family, you are the “thinker and planner,” the gentle intellectual. Some of the things I got from you were an understanding of how finances work, an interest in researching, and, apparently, your ability to make friends: mom reports that you know all the others on your morning hiking trail by name. This has been one of the delights of my life–thank you for that!
Some of my fondest memories include going on a test date together to learn how to expect to be treated, flying to visit colleges with you, going on the family trip to Hawaii and another time renting a beach house in Sea Ranch, sitting quietly (comfortingly) with you in a car dealership as I was nursing a broken heart, convincing you to help me buy my house (“if this is a mistake, let me make it”), then helping me replace a broken sewer pipe in it when I had no money left to pay a plumber.
As recently as the 70s, fathers were viewed like second class citizens. I’m sorry if I made you feel like that. I have always known that you would be my safety net, helping me navigate my life if I needed it. I see my brother with his son and am charmed by their relationship and know that he learned how to be a father from you.
I can only imagine what it is like to raise a head-strong child like me, imagining what that life would be like, then watch as illness takes over and feel helpless to do anything about it. But I learned from both of you how to be flexible and always to have humor. Please know that I know we are all just doing the best we can.
I love you, Dad! Happy Father’s Day and thanks for everything.
My ‘a-ha’ moment: I never “hated” exercise (i.e., the movement made in childhood). Read more…
Parts of this post were originally published on June 23, 2008. It has been updated to reflect new findings.
I wrote this in 2008:
Exercise. I do feel better when I am doing it regularly, but every time I stop for an exacerbation, it takes so much out of me to start again. And there are conflicting schools of thought on whether it is better to force my way through the exacerbation or whether I should give in to the fatigue at that time.
As of today, I have found no evidence that if you do responsibly push through fatigue you could do permanent damage. Currently, the thinking is that your body knows best. So do what feels best to you.
I am now getting on the elliptical machine everyday. It’s kind of like a stair-stepper with moving handles so I am pumping my arms as well. It allows a bit of stability while I am moving and I like to imagine I am walking unassisted.
I can’t remember why I stopped doing this. I am pretty sure it was not because it got too hard. And we still have the equipment, but it is tucked away behind heavy furniture. But I do think I would like to try again on it. To be more disciplined and mindful about it this time.
My therapist recommends that we don’t exercise before bed because vigorous exercise is stimulating and can interfere with a body’s ability to fall asleep. I, however, am exhausted by this tiny bit of exertion so exercising right before bed for right now allows me to take advantage of that exhaustion.
As I have already admitted, this is still not a problem for me. Vigorous anything is not my problem, neither is falling or staying asleep.
I am hoping that as I get my stamina up, I will no longer be exhausted by it and thus will have to schedule exercising for some other time of day. Until then, I am working on increasing the time I can stay on it. I am currently only up to about two minutes, but hey, I started at thirty seconds.
My favorite way to workout is still the pool, but I have stopped going up there for right now…
Recently I came across the idea that to find types of exercise you like, examine what you liked to do as a child. For me that led to remembering bicycling around town, hours spent on a friend’s trampoline, practicing at swim team, going roller skating and horseback riding, taking stretching, yoga, gymnastics and dancing classes.
And regarding the idea of activity, this is proof that I do not hate exercise. As children we never viewed it that way. My “a-ha” moment!
I can consider these as all part of my motion, the cumulative effect. And even though now I’m in a wheelchair, I still need to move. So I resolve to re-work some of these ideas to find things I would like doing now consistently. To build a “chain of habit.”
Therapists often say that the hardest thing about an exercise routine is starting and then sticking with it. So as Warren Buffett is fond of quoting, “The chains of habit are too light to be felt until they’re too heavy to be broken.” And as Jerry Seinfeld says, just “Don’t break the chain.”
As a wheel-chair bound MSer, I have found microfiber rags to be energy- as well as money-saving. See more…
As a wheel-chair bound MSer battling fatigue, I find cleaning my house to be one of my most daunting challenges. These days, I would like to keep my own house clean, but I admit that if money was less tight, I’d definitely hire a housecleaning service.
Instead, I do what I can and depend on family and friends. And one of the best things I use lately is microfiber rags.
What is it
Microfiber is a synthetic, usually made from polyesters. It is called microfiber because it is so fine, Wikipedia says it is even finer than silk thread, which has a diameter itself 1/5 the size of a human hair.
The combinations of teeny, tiny materials bundled into teeny, tiny thread, are then woven into fabric used for upholstery, apparel and cleaning products.
Most often, in cleaning products like these towels, the fiber is notched. The area between the notches creates a larger surface on the fiber itself, the better to attract and cling to dust and other particles, and to absorb liquid.
A non-notched microfiber can exist, but is basically just a soft fabric: it isn’t designed to be absorbent.
Here is a public domain image I found showing the difference between a regular cotton fiber and a microfiber:
Traditional cleaning cloths require a cleaning agent (detergents, soaps and other chemical cleaners) to dissolve the dirt, which then needs to be rinsed off, or it simply just moves the dirt around.
But the notched fibers of the microfiber cloths are able to pick up and hold dirt until you are able to safely shake it out or dispose. So the MF can be used with just water, so it doesn’t need to be rinsed. (Read: easier for me)
Now I don’t usually like the feel of synthetics, and I especially don’t like the lack of absorbency of them. But the use of notched microfiber in towels, for example, has made them wildly absorbent.
Turns out, MF towels were first used at swimming pools. They dry quickly, I assume because of the fiber size, and don’t become stale if damp, I assume because of the polyester. Even the small ones will dry a body quickly.
MF is also static-free. But as I’ve already said, this can be problematic when using plush-textured rags in cleaning electronics, like I do.
So while the material is good for this, it may be safer to use flat instead of nappy MF cleaning cloths for TV and computer screens. Or clean them really well between uses.
Another benefit of MF is that they are washable and reusable, unlike paper towels.
But towels made of microfiber should never be washed with oily, soap-based detergent or subject to fabric softener. The oils and surfactants in these will clog the MF and decrease their ability to absorb.