On becoming a cyborg

A cyborg is, according to wikipedia, a being with both biological and artificial parts.

Most of my artificial parts are to keep my environment sufficiently at bay that I can function, and to hold together the bits of me that are coming loose.

 I have in-ear musicians filters and Sennheiser noise-cancelling headphones for different levels of noise.

I have nose filters for when my sense of smell overloads. (They work too.)

I have sunglasses most days, to keep the light levels bearable (and I have both an eye patch and a sleep mask for when darkness is required). I have reading glasses for close work. I carry a magnifying glass.

I have a hat, SPF 30 (Australian maximum) and a white cloth to put over my lap when I'm in the car so the sun doesn't trigger my heat rash.

I have a shoulder brace to keep my upper back in situ, and stabilize my shoulders.

I have a lumbar roll for sitting for any length of time, especially in automobiles. It creates the correct lordosis (arching of the lower spine).

I have orthotics for inside my shoes, to stabilise my knees and ankles.

Today I've bough myself a Dorsi-Strap to combat the slight foot drop and stabilize my ankle further. This will prevent fatigue when driving (I hope). Its supposed to improve my gait by making my foot follow through the step right to the toe.

Part of me laughs at how much paraphernalia is required to keep me on the road, so to speak. Part of me is glad this stuff is available. What's normal anyway?

Heat edema

A while back I wrote about heat rash. Now I have the option of swelling too.

I recently came on holiday to somewhere warm. In cold weather I stiffen up alarmingly so I've taken to fleeing the cold whenever possible. My warm refuge had a spot of warmer warm and I became a bit discombobulated with the heat. Yes, I get both heat and cold sensitivity symptoms - I'm just lucky that way, I guess.

Along with discombobulation, my legs and feet swelled up a bit. My ankles became 'tankles' and my thighs were oddly lumpy in sweat pants. Then we had a thunderstorm, and the heat broke, and within an hour I was headache free, clear-headed and… shrinking.

A bit random google research shows that heat odema is relatively common and usually benign. It is also quite prevalent among people with MS. (And people who are overweight. And women who are menopausal. I score 2.5 out of 3.)

Up till now I thought I was imaging things.

One website mentioned that some people with MS find that moving to a very stable, mild climate really helps their symptoms. Once I would have assumed that was a solution for 'rich' people. Now I'm beginning to understand you'll make a lot of sacrifices to feel well and move freely.

Why I need my sleep...

Buried in an article about rehabilitation and MS, I found an interesting mention of fatigue caused by brain plasticity. Seems those of us with MS may need our (extra) sleep to rewire our brains to work around the damage:

Although we have traditionally managed fatigue with a variety of medications, recent research suggests that it is possible that we may be doing to a disfavor some of these patients. Although many MS patients are disabled by their fatigue and need to aggressively treat it with medications, the sense of “tiredness” noted by some patients may be related to the progressive establishment of new brain traces “plasticity” occurring in a condition which produces ongoing neural degeneration. Clinicians often note a disconnection between the marked brain atrophy present in an individual patient (implying significant loss of pre-formed neural pathways) and the ability of such a patient to function. To function as well as they do, extensive plasticity — confirmed by imaging studies — has occurred in these patients.

What is required for plasticity to occur most efficiently? Studies in rodents demonstrate that new learning requires fairly immediate slow-wave deep sleep to encode newly learned information. Additionally, studies in volunteers confirm this in humans. It appears that the consolidation of new brain traces for efficient learning requires a fairly immediate period of slow-wave sleep to allow for the “offline” processing required for new synaptic plasticity. Consequently, the question arises as to whether it would be better for MS patients to have more periods of deep sleep rather than take drugs to stay awake. Are tiredness and fatigue trying send to the message “Give this brain sleep?”

If anyone wants me, I'll be taking a nap.  And possibly removing all caffeinated beverages from the house.

Knees up, mother brown

Improvement in my gait, thanks to exercises involving tapping my toes while weight bearing on the other foot. I no longer list to one side. So far, so good.

Hadn't had much luck doing the next stage of hip muscle development, the modified hip abduction exercise (aka "clam shell exercise"). They were sending my muscles into spasm. Not desirable. They're supposed to make walking easier, not harder.  Beginning to feel a bit despondent about my progress, when I was sideswiped.

As an aside, I asked the neuro-physio if it's normal for knees to grind.  My patellas grind when I extend my leg. Neuro-physio had a feel, and it's common but not desirable. The kneecap is being pulled out of its proper alignment because one side or the other of the leg muscles is over-developed (or under-developed). In my case, my inner knee muscle - vastus medialis (a.k.a. 'teardrop muscle') is weak, and my outer knee is over-strong. It can happen the other way too.

My legs have been experiencing difficulties for much of the past year. It's been one damn thing after another. I actually started to cry, because when you have possible MS, problems with walking are a bit of a hot button. My neuro physio is remarkably upbeat about this. It's just part and parcel of getting me rehabilitated from a low point. It's like a car, if you don't get it serviced for a while, when you do it's going to be expensive and time consuming.

My advice: look after your body.  Once one tiny muscle/tendon starts going wrong, it's like dominos toppling. The next muscle or joint down the line is stressed, and before you know it you can't exercise until the current injury heals.

So I'll be taping for a couple of weeks, and have an exercise program that should put this right in a month to six weeks.  When I'll have a real knees up to celebrate.