Of all the things I’ve lost, I miss my mind the most.

October 2, 2015 § Leave a comment

iuI seem to begin writing a new post every other day. An idea – something I want to share, a discovery, something I want to bitch about, some profound revelation – comes into my head, and begins to write itself. I marvel at the human brain’s capacity to remember words, to string them together in comprehensible sentences, and eventually to express ideas. The fact that other human brains can translate those strings of letters into concepts and ideas is further remarkable.

What happens all to often – as it just did with this post – is that I get part way into what I want to say, and my train of thought goes off the rails. Or gets shunted onto a different track and I have no idea where it is going. And sometimes no real idea of where it came from. I glance up and look out the window, and get stuck there for 15 minutes.

I have a list on my desk of topics and ideas to write about, a list that grows every day. There is a growing collection of drafts, a paragraph or two in length, on my hard drive, essays and commentary that I started off on going great guns. In every case, I have paused during the writing to read over what I’ve written, only to find that the destination I was aiming for seemed to slip further away the more I wrote. It’s all in my head; it gets lost in the translation into words.

Thankfully, I still seem to be able to write fiction. I’ve been doing writing practice, writing for a set amount of time every day , with no concern for the result, for many years. The idea is practice, the way one practices any skill – the more you do it, the better you  get at it. So it is good to find that I can still write completely invented stories, stories and scenes that can flow in any direction they want. They don’t have to make sense even to me. I don’t feel the need, in most cases, to go back and edit or even re-read.

But here I am, wandering again. I occasionally post short fiction to another blog, Two Buddhas in Conversation, but not often. Of all the things MS has taken from me, I miss my mind the most.

From the Forum

September 9, 2015 § 3 Comments

avatar200(I did not write this post. I found it in a discussion forum on Patients Like Me. Thanks, Tinkerbelle!)

When we say we can’t do something because we don’t feel well, put yourself in our shoes by using the examples of our symptoms below:

Painful Heavy Legs: Apply 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down.

Painful Feet: Put unequal amounts of small pebbles in each shoe then take a walk.

Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil. If successful stab yourself in the arm.

Loss of Feeling in Feet and/or Legs: Ask a doctor for a shot of Novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Don’t fall down.

TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw daily.

Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments. Wear them for an entire day.

Tingling: Stick your finger in an electrical socket, preferably wet.

Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day.

Shots: Fill a syringe with saline solution. Give yourself a shot everytime we do our shot.

Side Effects From the Shot: Bang your head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage, then treat yourself to some spoiled food or drink.

Trouble Lifting Arms: Apply 20 LB wrist weights and reach for something on the highest shelf in your house.

Spasticity: Hook bungee cords to your rear belt loops and pant leg cuffs. For your arms, hook bungee cords to your shirt collar and cuffs on shirt sleeves. Then go dancing.

Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one.

Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes.

Urgently Needing to Pee: There is a .5 litre remote controlled water bag and drip tube in your pants. You are at the mall where there are 2 restrooms. You have 30 seconds to get to a restroom before the water bag is activated. Or it might be 20 seconds, you won’t know. 

Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day.

Pins and Needles: Stab yourself repeatedly with needles all over your body. Alternatively, get a very large tattoo in your most sensitive area.

Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, and walk the dog. 

Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try to function properly and think clearly. To make it even more real, take the sleeping pills with a small sip of wine.

Bowel Problems: Take a 4 day dose of an anti-diarrhoea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks. At the end of 3 weeks, sit down on a hard uncushioned chair and stay there till tears appear.

Burning Feeling: Make a full pot of boiling water, fill a squirt gun and shoot it at yourself all day long.

Intention Tremor: Hook your body to some type of vibrating machine. Try and move your legs and arms. You are not allowed to use anything fun for this lesson.

Buzzing Feeling When Bending Head to Chest (L’Hermitte’s Sign): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

Memory Issues: Have someone make a list of items to shop for. When you come back that person adds two things to the list and then asks why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

Foot Drop: Wear one swim fin and take about a 1/2 mile walk.

Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. Get attached to one or more of the animals and when you come back the next day, come in while they are putting her/him asleep.

Fear: Dream that you have lost complete feeling in your feet and when you wake up to wiggle your feet, they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.

Swallowing: Try swallowing the hottest chilli pepper you can find.

Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire in the fireplace and get into it. Once you have reached about 110°, add all of the above symptoms.

After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counselling is the answer.

I’m seeing the future of mobility

September 1, 2015 § 2 Comments

avatar200I saw this yesterday, and I’ve been fantasizing ever since – the SmartDrive, from MaxMobility. Take a look:

This looks like so much fun! It’s pricey; at $6000, it costs more than most manual wheelchairs. But the SmartDrive does have FDA approval, so it is likely covered by most insurance with the right prescription (information and downloadable forms here). It is a remarkable device, well designed with the wheeler firmly in mind. The SmartDrive addresses most wheelchair issues – hill/ramp climbing, wheeling over grass, carpet and other moderately rough terrain, it is easy to install and remove, it works on foldable and fixed frame chairs. The controls are intuitive – either using the same starting and stopping we’re used to with the hand rims, or with the bluetooth wristband. It is lightweight, compact and waterproof. It combines the portability of a manual chair with the ease and, dare I say it again, the fun of a power chair. (Remember fun?)

Perhaps most important (and this is key for insurance coverage), the SmartDrive will vastly reduce the number of pushes on the rims, essentially eliminating the danger of wrist, elbow and shoulder injury.

Granted, I have not used or even seen this kerjigger. I’m basing all of this on the MaxMobility web site. It is nearly impossible to test drive things like this without actually buying it, and then returning it if it’s not what you want. If you are very lucky, you might live near a dealer or get the chance to see it at a trade show like The Abilities Expo.

Pardon my gushing, but I’m seeing the future of personal mobility.

My Spa Day

August 21, 2015 § 2 Comments

avatar200Everyone needs a little pampering, even men. A little time at the spa is often just what the doctor ordered. In my case, it is exactly what the doctor ordered. It’s the only way I’d ever have gotten there.

OK, it’s not really a spa. It’s not even really very relaxing. I don’t come up out of the therapy pool, rising majestically on my little plastic chair, feeling refreshed and rejuvenated. After 20 minutes chest deep in the warm water, the first thing I feel when I resurface is the pull of gravity. In a few minutes, when I am back in the little dressing/shower room, my body reminds me that I have been working out. My morning at the spa is more like a morning at the gym.

The routine I follow in the pool (and disabuse yourself of any notion that this is a swimming pool. At 20′ square X 4′ deep, you’d be literally risking your neck if you tried to swim laps. There are little graphic “No Diving,” warnings all long the edge.) is made up of the same exercises I do at home, gentle repetitions designed to improve range of motion, strengthen leg and arm muscles and build core strength. As I do in the pool, I work from a menu of choices, focusing on different parts of my body, with the aim of varying the routine from day-to-day. At home my goal is 10-15 minutes twice a day, a goal I seldom reach. One therapist told me to approach these workouts as if they were my job – to take them that seriously, with that level of committment. If this really was my job, I’d have been fired long ago.

The reason I go to the added hassle of getting into the pool three times a week – arranging a round trip ride, wheeling into the tiny changing room, changing, showering, wheeling to the pool room, getting lowered like a tea bag into the pool, and then doing it all in reverse after my workout – is that the effort, and benefit, is multiplied by the resistance of the water. The buoyancy also makes it possible to work out longer. Having Dori, the aqua-therapist, telling me what to do helps too.

It’s a good resource, one I am very glad to have access to. I appreciate the fact that the other guy in the pool is as misshapen and injured/crippled as I am – truly a no-judgement zone. My Medicare approved schedule of visits are used up, so if I am to continue working out in the water, I’ll have to self-motivate (not my strong suit) and get myself to the Y. I wish I could bring Dori with me to call out the drill. And maybe the Y will offer a mani/pedi afterwards, to complete the spa treatment.

Seen and noted

July 31, 2015 § Leave a comment

Saw this on the chronically_something tumblr:


The Overeating Analogy, part 2. (Further adventures in the Garden of Eatin’.)

July 21, 2015 § Leave a comment

avatarWhen I was in  college (in a former lifetime), I had a girlfriend who’s parents were, to my limited worldly experience, very Italian. I used to love visiting them with her on weekends – her mom was a great and prodigious cook. There were always tons of classic Italian eats in the fridge. One weekend in particular stands out in my memory.

It was Easter. Ma had spent several days preparing the feast, and when Sunday rolled around, I was primed and ready. The Groaning Board was just that, and more. Spread out in the dining room was more food than I had ever seen in one place. Two kinds of lasagna. A ham. A bowl of home-made meatballs in home-made marinara sauce. Sausages from the neighborhood butcher. Another bowl brimming with pasta in sauce. A platter of sliced fried eggplant. Bread from the local bakery. Probably some sort of salad. I want to say another platter on pork chops. I know I am forgetting something, but suffice it to say there was enough to feed the entire village of Oceanside. 

Now, the activity around the table was as wildly different to me as the amount and variety of food. Very little conversation, as I recall, though I very well could be mistaken. Not knowing any of the extended family, I couldn’t follow stories told about Uncle Nunzio and others. I loved it and soaked in what I could. What struck me, as I recall now some 40 (!) years later was the difference in table manners and etiquette that went around the table. I was brought up with an appreciation for almost formal table manners. Please and Thank you preceded and followed everything. Politeness ruled. Here in Oceanside, I was getting gently teased for asking someone to, “Please pass the salt.” The family vernacular was a wave of a hand and, “Gimme the salt.” It wasn’t rude, it was simply a different culture. I thought it was far more genuine than that in which I had been brought up.

As the meal was winding down – although to my eyes, there was no less food on the table – Ma asked me to pass my plate around for more, the plate I had already filled and emptied two or three times. I politely declined, telling her I didn’t think I could eat another bite. “What, you don’t like it,” she  asked with a hint of hurt in her voice. How she could think that, after all of her fantastic food I had put myself outside of, I don’t know. “Oh, no, Ma,” I explained, “I love it all. I’m just full.”

A long story (I could easily have made it longer) to suggest that this is like MS fatigue. When I zone out, or when I’m not paying attention to the conversation, or have to leave the party early, or not even go to the party in he first place, I’m not being rude, I’m just full.

And we hadn’t even gotten to the cheesecakes, pastries, coffee and sweet wine yet.

The Overeating Analogy

July 20, 2015 § Leave a comment

avatarThis just came to me this morning while I was in the shower, where I do a lot of my deep thinking. I’m heading off for a few days of a mini family gathering, and I was thinking about how hard it is to explain the kind of fatigue that can set in, and persist, from extended socializing. I think this might be the best analogy I’ve come up with yet.

“I’m not being rude, I’m just full.”

MS fatigue is like overeating. Here’s the scenario. A bunch of friends go out to breakfast together. French toast, eggs, bacon, home fries, toast with jam, coffee, maybe scone or two. Yummy, and you’re feeling well fed. A little later, someone in the group suggests popping in to another restaurant for a little brunch. You’re having fun, and you love to eat, and this restaurant in well-known for its brunch menu, so you go along, and have another little meal that is tasty, and you’re having big fun. Noon rolls around, so of course it’s time for lunch. A big salad, a burger or a big fancy sandwich, fries or chips, or both, a beer. You’re starting to feel pretty full, but the gang is still rolling and having fun, so you roll along with them. You’ve had enough to eat, and you’re ready to be done. But you don’t want to break up the party and ask someone to give you a ride home.

Mid-afternoon, and there’s someone’s favorite ice cream shop. Everyone piles inside for shakes and mix-ins and sundaes. Oof. You are starting to feel stuffed and you’re fading. You’re slowing down, but everyone insists that you stay with them, and you’re still having fun, and who doesn’t love eating? Along the way to the dinner restaurant, everyone stops at The Best Pub for a few beers and those wonderful free appetizers. It’s hard to keep up, you’re starting to feel just a tiny bit ill. You opt for a seltzer and say no thanks to the appetizers, though everyone keeps offering them. Are we done yet? No – it’s dinner time! A cheese plate, a cocktail, a three course dinner with a lovely steak and a baked potato, or chicken breast with rice, or pasta Primavera, a few glasses of wine, dessert. You order a salad, pass on the bread sticks and dessert, stick yo seltzer. You are done, definitely feeling ill and really need to go. But, a night-cap! Another little cafe and a glass of Grand Marnier. You pass on beverages, even another glass of ice water is too much. The gang notices your lack of participation, and you get some concerned glances. Finally, someone suggests, bless them, that maybe it’s time to call it a night, which you’ve been hinting at since early evening. But wait! There’s a cool little club with a hot local jazz combo, so off the group goes. You would rather not. You feel like you’re going to be sick any minute.  Another drink, another little snack, more fending off, but some wonderful music.

By the time the day and night wind down, and you are delivered to your bed, you feel beyond satisfied and definitely ready to throw up. You’ve way overeaten, your is head awash with one drink too many, and a whole day of great fun with a great bunch of friends. Finally in bed, you find it hard to wind down and sleep, with your belly full to bursting and your head full of conversation, jokes, and drink. But the Sandman arrives, and you manage a few hours. In the morning, you come to and find a hint of nausea and a still full belly. The gang is back, suggesting breakfast, but you simply cannot imagine it. So you play the role of party pooper, and send them off without you. They don’t understand, and wonder quietly what is wrong, why you don’t want to go have fun, and you cannot find the resources to explain. You spend the day by yourself, lying in bed, hoping your digestive system will do its job and that maybe by tonight you’ll feel a little more human.

Yeah, it’s kinda like that.



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