Before Betaseron

In 1991 I was 26 and working as a waitress in a local pub.
 
I started to get brief moments of what felt like a buzzing in the back of my head that prefaced a loss of all strength; whatever I was carrying I dropped. Eventually it was happening every ten minutes or so and lasted for about 20 seconds.
 
Unbeknownst to me, the neurologist I had been sent to suspected I had MS. In those days an MSer was usually only given a possible diagnosis on the first visit, then probable based on observation of repeated incidents over time. There wasn’t even a test to definitively diagnose it.
 
The MRI
 
But it just so happened that there was this newfangled machine called a magnetic resonance imaging (or MRI) machine that would work like an x-ray but better. It would show him detailed pictures of what was inside my head. And he wanted me to go get a scan from this machine.
 
It was still so new (and expensive) there was only one in the entire SF bay area. When I got there the tech just told me they would do it twice: once as-is and the second time they would inject me with dye and scan again.
 
I laid in the machine and heard all this banging around me and contemplated what they were seeing and waiting for the injection. But after the first round of scans the tech came back and said they were done and I could go home.
 
The quasi-diagnosis
 
I realized later that they didn’t give me the second scan with the dye because they didn’t need to, that they could see the lesions without it.
 
Anyway, the doctor told me I had probable MS. Even with the confirmation of the MRI, which could show multiple brain lesions in a live person as opposed to autopsy after death, the presence of multiple lesions only mostly confirms it.
 
And at the time there was no treatment, nothing they could do. He told me all he could recommend was that I go home and move to the first floor and prepare for a possible wheelchair future.
 
The new era
 
Then in 1993 just two years after I was diagnosed, the FDA approved the first drug for MS, now known as a disease modifying treatment (DMT): Betaseron. It is produced by Bayer Healthcare Pharmaceuticals but even today they still don’t understand exactly how it works.
 
Researchers do know it is a protein produced naturally by the body in response to viral infections. And that one of the things it does to cells in the nervous system is to direct them to produce less pro-inflammatory and more anti-inflammatory agents.
 
They believe that by reducing inflammation in the brain, we will ease the still unexplained attacks by our own immune system on the myelin sheaths that insulate the fibers that connect our neurons.
 
(phew, I can see I need to back up and do a future post on the nervous system!)
 
What I concluded
 
For this story the point I’m trying to make is that the delivery system of this drug (a sub-cutaneous self injection every other day) seemed too extreme for the 26-year-old me since I had no symptoms. Also it was a brand new drug. I didn’t want to be a guinea pig. I thought it was fine to wait. I was wrong.
 
Next time: Anxious Avonex
 
As always, tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements.
 
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MS or gout

In 1997 I came across a tidbit that I thought was funny. It turns out that MS and gout are mutually exclusive, meaning that if you get one you likely don’t get the other and vice versa.
 
I’d love to know what researchers were looking for when they found that out! But there it is. We are lucky I guess. Although I suppose if I was able to choose I would choose gout. 
 
I understand the pain is excruciating, but it can be treated with medication. Even without treatment you could recover within 1 to 2 weeks.
 
Also it affects men more than women. Interesting because according to NMSS, MS affects at least two to three times more women than men.
 
What Cases It?
 
Gout is caused by an overabundance of uric acid (UA) in the blood.  This may be brought on by genetic factors, or by “what was once characterized as a “rich man’s diet” (high amounts of meat, seafood, alcohol and sweetened drinks)”.
 
It is produced by the body and is the main component of urine in both humans and primates. Normally, it is excreted from the body via the kidneys in the urine. But when UA backs up, causing high levels in the blood, it forms crystals in the joints which results in gout.
 
But these same high UA levels also appear to prevent the development of MS leading to my question: which came first? Does MS prevent us from getting gout? Or does getting gout prevent a person from getting MS? 
 
How Can Knowing This Help Us?
 
Researchers now know that UA acts as a “free radical” scavenger in the body.  For example, as part of basic daily processing, any body produces “highly reactive” molecules that create inflammation and damage nerve fibers. UA acts as an antioxidant and just “mops them up”.
 
It also has been shown in animal models of MS to reduce inflammatory flare-ups in the brain and slow the passage of inflammatory cells into the central nervous system.  It even prevented paralysis in mice. Unfortunately not in humans.
 
Another recent study found that lower UA was associated with disability progression, as well as cognitive decline. 
 
Even more recently, another study found that “UA levels declined during the course of MS, which suggested that the periodic flare-ups of inflammation that occur in MS may ultimately exhaust the body’s antioxidant reserves.”
 
So I assume then that keeping UA levels up is a good thing for MSers as well as supporting my antioxidant levels. I will add the forbidden-for-gout foods to my diet to increase my levels of UA. See list here.
 
Where To Next?
 
 
That leads to another question I have: since animals generally don’t produce UA because they have an enzyme that breaks it down, we have to artificially induce it in them. So doesn’t this enzyme skew the test results? 
 
Also would UA protect you from getting worse if you already had it? Because right now there is very little that can be done for those of us that have transitioned to secondary-progressive (SPMS).
 
Obviously I’m not a scientist. But clearly, I think the relationship between UA and brain inflammation should continue to interest scientists.
 
I pledge to bring it up at my next neurologist appt. at least.
 
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How to thank a caregiver

Family caregivers give a lot and don’t always get much in return. As much as they love the people they care for, the work involved in family caregiving can be exhausting. 
 
It is estimated that over 40 million people in the United States are unpaid caregivers to an adult family member or friend. That’s like 21% of the population! 
 
According to the National Alliance For Caregiving, “care delivered by informal and family caregivers add up to $257 billion each year.”
 
Since the count of MSers is now recognized as close to 1M, it would be interesting to see what the numbers are for those caring for someone with MS or another chronic illness.
 
And although the majority of family caregivers are women, more and more men are becoming caregivers too.
 
Imagine How They Feel
 
If you live in the same house as your caregiver, be aware that they may often feel invisible. Everyone’s attention can seem to always go to the MSer, causing them to feel that no one cares about them. Many say, “no one even asks.”
 
Also research shows that the “emotional stress of caring has little to do with the physical condition of the person with MS or the length of time the person has been ill. Emotional stress seems more related to how “trapped” caregivers feel in their situation.”
 
Just know that caregivers give a lot and don’t always get much in return. As much as they love the people they care for, the work involved in family caregiving can be exhausting. 
 
“The most successful carepartners welcome and appreciate the practical and emotional support of other people,” says the NMSS. Also, they “don’t give up the activities or hobbies they enjoy.”
 
What can I give
 
How can you show appreciation to your caregiver? Simply asking them is a great place to start.
 
Other ideas
  • Express your gratitude out loud and often. Brag to others about your caretaker.
  • Write out a note or card. Taking time to hand-write why you appreciate your caregiver can be very meaningful plus it gives them something with kind words they can reread in the future.
  • Suggest a coffee-break or cup of tea. In fact, encourage your caregiver to take breaks. Make sure they are taking time to fill their own tanks so they have the energy to take care of you.
  • Celebrate National Caregiver’s Month (November in the U.S.). It’s an opportunity to draw attention to the needs of all caregivers.
  • Show interest in the things that your caregiver is interested in. It shouldn’t only be about you.
  • Share jokes with each other. There is power in a good laugh. Try to do it at least once a day.
  • Find support services or even classes that might be right for them, or figure out a service they can use to outsource one of their regular chores.
  • Offer to help them with a task you know you can take on. Or, when visitors come, make the most of your time: be prepared with a short list of to-do items you need help with.
  • Try to temper your emotions, maybe make a conscious effort to be cheerful.  Facing perpetual crankiness can be draining.  Remember that your caregiver is not your therapist.
  • For paid help, you can give a bonus, a day off, or a quick call to their supervisor to report what a good job they do.
Look for ways to make your caregiver’s life easier. Even small gestures can make a big difference to someone worn out.
 
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More feed yourself

I feel like I just got comfortable with having salad for lunch every day in a wrap. But it’s so cold now! (Ha, OK: February in San Francisco!)
 
Because I still don’t think of vegetables first when hungry, stuff like this is pleasantly surprising. Like I’ve said (and I shouldn’t be so surprised) I have found eating vegetables every day makes a big difference in my energy.
 
So I decided to switch for awhile from lettuce to spinach that I can eat warm. Thus I can still cross ‘eat leafy greens daily’ off my to-do list.
 
Leafy Greens
 
Now in my mini kitchen (think small fridge with smaller freezer compartment, electric kettle, and a microwave), I keep a bag of frozen spinach.  In the simplest feat, I heat it up and pour bottled peanut sauce on it. Delicious, quick and easy. 
 
Another quick way to use frozen spinach is to toss it into canned soup. Again, no prep. 
 
I imagine you can buy other dark greens like Brussels sprouts, chard, or bok choy already prepped in the freezer section as well. In fact, I have a friend who gets her kale that way which avoids prep for those with limited hand dexterity or a limited kitchen!
 
Sweet Potatoes
 
My other healthy quick go-to lately is sweet potatoes. I wipe them clean with a wet paper towel, prick several times with a fork, then pop in the microwave for two minutes or more. When done I retrieve and just start eating, skin and all. 
 
“Sweet potatoes are one of the healthiest foods known,” according to some health and wellness gurus. “The skins of sweet potatoes contain a number of additional nutrients, so it is beneficial to eat your sweet potato with the skin.”
 
It’s a great hand warmer too.
 
Whole Grains 
 
I also have oatmeal every morning with walnuts and dried cranberries.
 
“Although oatmeal is nutritious, adding other toppings to your oatmeal will balance out your breakfast,” say gurus again. “Stirring dried cranberries and chopped walnuts into your daily oatmeal will add fruit and lean protein — the walnuts — to your breakfast.”
 
Instead of buying those little packets, I just get the regular canisters of oatmeal, then use an old plastic pudding cup container (light weight, plus portion control) to parcel out the morning’s amount, and add a handful each of walnuts and dried cranberries. 
 
I sprinkle on some coconut sugar (lower glycemic impact), heat water to boiling in my electric kettle, add it and cover the bowl and let it sit for a few minutes. Serving of nuts crossed off the list.
 
Eating like this crosses things off my daily to-do list: veggies, nuts and whole grains. Check!

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1M U.S. MSers

I had never heard of it when I first got told of my probable-diagnosis, but once I was told it was probably MS and I mentioned it to other people, almost everybody replied that someone else they knew also had it.
 
So I wondered how many others in the country were also dealing with this disease? How big was my tribe?
 
I called the National MS Society (at that time the WWW was still in its infancy) and got the same answer that they had been giving for years: that there were approx. 400,000 people in the US living with it.
 
I knew that wasn’t correct since everybody seemed to know at least someone afflicted with this disease.
 
I demanded to know what benefit the Society had in keeping the number reported so low? Did it mean the disease was considered an ‘orphan disease,’ eligible for money and tax breaks? No answer.
 
Why it matters
 
Turns out, according to the MS Society today, this 400,000 number was just an estimation based on population growth. In fact, “(i)n the United States, there has not been a scientifically sound, national study of prevalence since 1975.
 
Since the U.S. government never required MS incidence (number of people NEWLY diagnosed) or MS prevalence (number of people currently living with it) be reported or followed, the MS Society and others just estimate.  
 
To be fair, I do recognize the difficulty counting incidence of a disease in which there is no definitive criteria for diagnosis.
 
But it is said that “Society expects epidemiology to accurately document our health.” Difficult or not.
 
Studying MS leads to understanding its impact on people’s lives, their finances, and the healthcare and services people with MS need. Keeping an accurate count of us should underscore the extent of economic burden to our society.
 
It could also help scientists know if MS is spreading, and if there are MS clusters that hint at factors that may trigger MS.
 
New numbers
 
Since the government has shown little interest, the Society finally decided to do it for themselves and launched the MS Prevalence Initiative to determine a better way to determine a “scientifically sound and economically feasible” estimate of the number of MSers in the U.S.
 
They went on to explain that they are now using new and improved measurements because it had been so hard to count before. 
 
And I was both pleased and dismayed when I saw a new notice that a recent study more accurately showed that close to 1 million people in the country have this disease, more than twice the number they had been using.
 
They also noted that “the dramatic jump seen in prevalence has more to do with methodology than an actual rise in the number of MS cases” though they don’t discount that possibility. Sigh.
 
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I’m an MSer and a debt-oholic

Not unlike so many Americans, we battle debt but having a chronic illness in a country that does not have universal healthcare means that we are responsible for the slack on our own.
 
And all those costs like co-pays and coinsurance and medical equipment and incontinence supplies fall largely to us. 
 
How I became a debt-oholic 
 
When I was in college the credit card companies were eager to get us to sign up for a card. In our own name. How could I not? Now I recognize that as the seduction of a drug dealer. Just a little taste and then they got you.
 
Ever after, for the most part, I carried a balance and paid the interest on my credit card. I figured it was a small price to pay for the privilege.
 
I was convinced that, within reason, I could charge what I wanted when I wanted it and pay it off in installments.
 
What I should have done
 
First, amass and save a cushion, a small emergency fund, maybe $1500 in current times. Then keep empty credit cards in case of emergency, like the water main breaks or the heater goes out. 
 
(I like this idea better than accruing a large emergency fund. But another good place to stash additional emergency funds might be in your Roth 401k: although it is a retirement account, you could take back out little chunks up to the total amount of your contributions only, not any earnings, at any time with no penalty! I guess it depends on how you define ’emergency’.)
 
If you do need to use the cards, you must pay them back down to 0 again as soon as you can. That needs to go on the top of your priority list.
 
The plan in a nutshell
 
  1. Have 1-2 cards in your own name with zero balances that you can use as security when renting a car or getting a hotel room, but don’t use them to pay with! You are just showing vendors that you are good for it, that they can trust you. 
  2. If you must use a card, pay off the entire balance at the end of the month, ideally before any interest has been applied, but definitely as invoiced. 
  3. If you must carry a balance on the card, strive to pay it down quickly. And keep your eyes out for transfer offers that make sense for you.
  4. If you owe multiple loans and/or credit cards, note the interest rates of each and pay as much over the minimum payment as you can on the highest. Also I think you should never pay just the minimum on anything you owe. (And make sure there is no prepayment penalty that a lender wants to charge you for paying off the loan early. Hello? It’s your money! Not sure when that idea started, but it is definitely not consumer-friendly!)
When you pay even $1 over the minimum, it goes entirely towards just the balance, so if the agreement of your loan is that you are being assessed interest on whatever your current balance is, you can reduce the underlying balance this way: by paying extra over the minimum on all debts, even if it is as little as pennies! And as you pay one card off, you can add that payment amount to the payment amounts of the next one, and so on.
 
Opinions expressed are my own
 
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Lorna’s briefest history of the ADA

Curb Cut At Night (Luke Keller ©2019)
Curb Cut At Night (Luke Keller ©2019)
As an MSer, I feel like I’m kinda late to the party with regards to understanding how important the ADA is. I was diagnosed in 1991 but didn’t really experience physical disability until later in my life.
 
Why I care
 
The NMSS says “The ADA covers almost everyone with MS — not only people who use wheelchairs. It covers every person with an impairment that substantially limits one or more major life activities.”
 
How lucky am I to be living in this era? I take my electric wheelchair for coffee, I do all my banking online, I am able to work from home as a reasonable accommodation, and I write my blog with voice-to-text dictation.
 
mini-lift
Mini-Lift (Luke Keller ©2019)
In fact, in his book, Enabling Acts (see full site below), Lennard Davis says “Today we routinely see kneeling buses and buses with wheelchair lifts as a part of the urban landscape. It is an aspect of the success of the ADA that many of its accomplishments are now invisible to us since they are so much a part of our lives.” (Emphasis mine)
 
How it came about
 
For example, one city might mandate a reserved parking space close to the entrance of stores. But it wasn’t a federally mandated law, no comprehensive legislation. It was a catch-as-catch-can basically wherever needed.
Pool Lift (Luke Keller ©2019)
Pool Lift (Luke Keller ©2019)
 
Before the ADA, lawmakers were passing little laws here and there to correct disparate problems that suddenly (to them) popped up.
 
Then in the 1960s, civil rights for disenfranchised groups seemed to culminate in the Civil  Rights Act of 1964. And while in the immediate aftermath, the feeling among lawmakers was that trying for disability civil rights then was way over-reaching, the seed was planted.
 
Then in the 1960s, civil rights for disenfranchised groups seemed to culminate in the Civil  Rights Act of 1964. And while in the immediate aftermath, the feeling among lawmakers was that trying for disability civil rights then was way over-reaching, the seed was planted.
 
According to Davis, the initial idea behind the ADA was sparked by language slipped into what would become the Rehabilitation Act of 1972 for soldiers who were wounded in Vietnam. It said “No otherwise qualified handicapped individual in the United States, as defined in Section 7(6), shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.” After many pushes, it was (reluctantly) signed by Nixon in 1973.
Bus driver lowering ramp (Luke Keller ©2019)
Bus driver lowering ramp (Luke Keller ©2019)
 
Next, after 20 years, and presumably once we had become used to the idea (sigh), the non-partisan National Council on Disability drafted the first version of the Americans with Disabilities Act. There was more political back and forth, but finally it was signed into law by Pres. George H.W. Bush in 1990. Then further amended and signed by Pres. (Bill) Clinton in 2009. Phew!
 
We made this
 
Some people are convinced that programs as monumental as the ADA will never again pass in our divided and hostile government. I hope that is not the case. As a collective, we Americans have shown the we can come up with all manner of clever solutions. 
 
Reading about the ADA made me realize how impactful it can be when the two parties of Congress work together to produce something for our common good. And it’s not perfect, but it makes space to let the creativity of society continue to reinvent how things could be made easier and more useful. 
 
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How you think matters

I’ve been reading the book Talk is Not Cheap!: Saving the High Costs of Misunderstandings at Work and Home. The author explains, “Thoughts are not idle.  Make yours work for, not against, you.”
 
What has intrigued me is the discussion of the two halves of the brain and how we can use them. 
 
The Logical Side
 
She explains that when it is awake and alert, the left part of my brain tries to protect me by reminding me of messages I got while growing up and outcomes of previous experiences, for example.  
 
But when the logical part of my brain shuts down at night, the right side, the creative part, is always on. And, as it turns out, is very gullible. 
 
So when the right brain is unrestrained by the left, I can dream.  But also I can trick it!  
 
The Creative Side
 
Since the left-brain is slow to re-engage after turning off–say right before you fall asleep and as you wake up–you can consider this prime time to influence your thinking.
 
It also turns out that the right part of our brains can’t tell the difference between actually performing an action and just imaging it.
 
Put Into Practice
 
Using this information, for example, as part of their training athletes will enter a relaxed state (which turns off the left half) and just imagine that they are playing their sport.
 
And when one of my MS callers admitted that she often wakes up in a panic, I suggested she try repeating affirmations or practice visualizations right before bed and again when she first wakes up.
 
In fact I now consider the 30-minutes before I go to sleep and the 30-minutes after I wake up, to be fragile, sacred, potent!
 
Editor’s note: Originally posted on 08.25.10. Updated re-post. 
 
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MS and the DMTs

In 1991 when I was first diagnosed, I was told there was no treatment, nothing even recommended. I was told to just go home and though it may never get this bad, to make plans for a being in a wheelchair.
 
So I squirreled away old shoes I would wear when in a wheelchair to demonstrate to others that I use to walk, that I was still in their club. And I signed up for motorcycle lessons.
 
Then the first “MS drug” —Betaseron— was approved by the FDA in 1993. But everyone was quick to remind us it was not a cure. Nothing yet could halt  progression. The drug could only slow it.
 
Do I Start?
 
So began the advance of the “modern” age of MS medication and the word “immunosuppressant.” Yes, while everyone else works to boost their immune system, ours is out of control, attacking the nerves in our brain and spinal cord.  
 
(There are now more than 15 drugs, sometimes called disease-modifying therapies or treatments, DMTs. See chart here.) 
 
But it was still new, my doc at the time never even mentioned it, and I thought giving myself a shot was such an extreme, big deal since I didn’t have any symptoms. So I assumed I could wait to see if I got any. 
 
Big regret. Once I started having symptoms, and started giving myself shots, it was apparently too late. The disease had silently progressed while I “was busy making other plans.” (John Lennon, Beautiful Boy)
 
I will always wonder if I would’ve started sooner, would I still be able to  walk?
 
Why start them?
 
Evidence now says you should start disease-modifying drugs as soon as possible. I concur. What I learned is that you can never have a do-over in disease.
 
Often when you are first diagnosed, you decide you can treat it with alternatives to Western medicine. By changing your diet or taking herbal supplements, maybe. 
 
And when you do, you feel better.  It can’t just be placebo, can it? But you are forgetting two things. 
 
One, you were most likely diagnosed with Relapsing-Remitting MS (RRMS), so while your doctor was determining what was causing whatever you went to her for, you probably went back into remission all on your own.
 
And two, it’s a neurological disease. Because you now have been told it’s probably RRMS, you will never again be able to judge your disease by how you are feeling.
 
Why stay on them?
 
Yes, these drugs are so expensive and generics are hard to come by. You may fear that drug companies are just being greedy. The news reports all the time about shady practices and all kinds of fraud.
 
But it’s your life. You may be able to get financial assistance from the drug companies, or even the MS societies. You must now recognize that you’re on an expensive journey not of your choosing.
 
You must trust your healthcare professionals, or find new ones, since you can’t necessarily tell if it is doing anything. And I’m not suggesting that you give up any alternatives you believe are helping too. Obviously ask your doctor first.
 
Please just know that if you stop to see if you will feel worse, you can’t just resume and get back to where you were.
 
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MS is bittersweet

Sigh. I’ve had this disease a long time and am thankful that it is not life-threatening to me right now. But sadly I have had to give up some things. 
 
THINGS I’VE LOST
 
Writing by hand. I miss journaling in the morning when I first get up, which I told someone once was keeping my own counsel.
 
And although I could continue to do it on a computer, I know myself. I would go back and edit as I go.
 
Which would defeat the whole purpose, described in Julia Cameron’s The Artist’s Way:
 
“When we write by hand, we connect to ourselves. We may get speed and distance when we type, but we get a truer connection–to ourselves and our deepest thoughts– when we actually put pen to page.”
 
Wearing regular underwear. I now must wear disposable, extra-absorbent underwear, something that I used to joke about with friends saying I’d have to insist on black ones since I mostly wore black panties. 
 
The whole set up is way more bulky than would’ve been acceptable back when it wasn’t needed. But I am mostly sitting in a wheelchair now so you’re not gonna be noticing the lumpiness.
 
Walking. Traversing a sandy beach, doing cartwheels, jumping on a trampoline. Roller skating. Trying on clothes in the changing room. Climbing stairs and trees. Standing up to shower.
 
Driving. When I was leaving work on one of my last days in the office, I was heading for the on-ramp to the freeway home. Suddenly the light changed and the guy in the car in front of me slammed on his brakes. My brain recognized it but the nerve signal couldn’t make it to my foot.
 
At the last minute I was able to swerve but sideswiped the bumper of the car in front of me anyway. Luckily there were no injuries. We pulled over to exchange details, and after he left I realized I needed to stop driving.
 
Now I’m dealing not only with the loss of my ability to manage my reflexes, but to even bend my legs at will. My vision is also no longer reliable
 
Doing some creative things. Sewing something. Tearing pictures out of a magazine to paste together in a collage. Baking. Saying “In a sec” to something and having it only actually be a second.
 
CHANGING MY ATTITUDE
 
Then I remember that I don’t have chronic pain. And that I can still dress and toilet myself, swallow food, and talk and breathe on my own.  So I make a new list.
 
THINGS I’M GRATEFUL FOR
 
Working. Telecommuting from home, and also that I am still able to be in my home. Online bill pay. Grocery delivery.
 
Incontinence supplies. I think all the time how lucky I am in all the unluckiness of this that I have disposables. And black adult diaper covers. 🙂
 
Participating. Elevators. Cut-outs in curbs and other ADA stuff. Wheelchair service at airports. The Internet as community.
 
Doing other creative things. Able to knit. Blogging. Learning new things.
 
If you can’t change your fate, change your attitude.
-Amy Tan, author
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