My ALS FAQ or FUQ

"my" because I am here all the attempting to document my experience
with my ALS -- not ALS in general.
FUQ because I feel questions often go unasked, especially by adults.


What is ALS?
Lou Gehrig's disease, like Stephen Hawking has. A neurodegenerative disease that causes paralysis and muscle wasting.

Is it contagious?
No. Nobody catches ALS from another person.

Is it genetic?
90% of the cases are considered sporadic. I have no family history of ALS.

Is it curable?
Currently there is no cure available, there is no treatment.

What is that mask on your face?
It's called the bipap -- very similar to a CPAP used for sleep apnea. It's an air compressor. Not oxygen, ordinary air.

Does ALS hurt?
In my experience, it is not painful, and that is consistent with the literature, though I have heard others complain of a lot of pain. I have some pain -- earlier on there was sort of a opposite of "growing pains", i.e. a dull ache as muscles atrophied. Earlier on there was also muscle cramping. But now there is not much muscle left to cramp or ache.

What does ALS feel like?
Not being able to move a finger feels sort of like not being able to wiggle your ears. It doesn't really feel like the finger is immobilized, it's just not going anywhere. When I first had trouble walking, it felt like wearing a leaden pancho. Now I am confined to a wheelchair all day and it feels like G forces are pressing my upper body backward into the chair. My hands and feet are often very cold -- even in the summer.

Can you still feel?
Yes. Sensory nerves are not affected. Only the motor nerves -- those carrying signals from the brain to the muscles -- are affected.

Is it a disease of the myelin sheath?
No, it is not like MS.

How did you get it?
No one knows. It usually strikes adults, males more often than females. It has been observed, though not totally accepted, that it more often strikes lean or athletic people. It seems to strike Italian professional soccer players more often than the general population. Gulf War veterans seem to get ALS twice as often as would be predicted statistically.

Any ideas why?
Nothing but speculation: blue-green algae, protein misfolding, an autoimmune problem, a blood brain barrier problem, etc.

if they can induce ALS in a mouse, how is that they don't know what causes ALS?
10% of ALS cases are "familial"-- involving a specific gene. They are able to splice that gene from human DNA into a living mouse and produce ALS like symptoms. They test drugs on these mice. It is hoped, but not proven, that knowledge gained through this method is transferable to humans.

Are you depressed?
I have had five years to deal with it -- 11% of my life so far. Some people are prone to depression -- I don't think I am. One must take each day for all it's worth.

Are you scared?
Mostly no. I could die of carbon dioxide buildup -- drift off to sleep and not wake up. That sounds like as good a deal as anybody gets. Or i could fall smash my head, get run over by a truck etc.

Are you able to sleep?
There was a point where I would feel somewhat panicked when I went to bed -- sleep should be restorative, we sacrifice part of the day to unconsciousness in order to wake up refreshed. I felt that my time remaining was limited, and with the passage of time I felt that it weakens, not refreshes. It sucks. I got over it.

Do you ask "why me?"
A bus driver asked me that -- I don't think it occurred to me. I did wonder if things I did, or were exposed to, contributed, but at this point that is totally unanswerable and researchers are skeptical that knowing the cause would even lead to a therapy -- if a building catches fire, knowing where it started isn't really useful in putting it out.

Are you seeing a specialist?
Yes, I go to an ALS clinic.

What do they do?
Watch. Advised me against trying any alternative treatments. There are no other treatments. They did get me this wheelchair, and bipap, and offered a leg brace, but mostly they look stuff up on Google and tell me about it, and admonished me to not believe any thing on the Internet.

What does it feel like to have only a quarter of normal breathing?
When I have to take the bipap off, it's kind of like swimming. I could be without it for a short period of time, but I need to get it back on quickly. I keep thinking of that scene in 2001: A Space Odyssey where David Bowman has to travel from the pod back to Discovery...


Can I have your stuff?
Bite me.

PBP Contrôles

Here is a randonneuring article. that I have been "sitting on" until the time is right. Hopefully, of interest to PBP newcomers.

I went to see the pulmonologist today.

I went to see the pulmonologist today. The news was bleak. My O2 level was very good but they say it is the CO2 that kills you, and that's not easily checked. Yet without checking they are very confident that my CO2 level is very bad, or soon will be. I believe they base this on the fact that my FVC has declined from about 50 percent in April to 28 percent now. I think part of that decline is because, unlike now, back in April, my back was strong enough that I could sit up, lean forward, lean backward, etc. But I must admit the bi-pap doesn't seem to be quite enough sometimes.

He felt it would be unsurprising if I die of respiratory failure any minute now, and wants me to decide whether I want a ventilator soon -- early January. It may sound like choosing between dying and the machine is a no-brainer. They seem to lean toward dying. CO2 builds up in the blood; you get sleepy, and you don't wake up -- that sounds about as good as it gets for anybody. But they say life on the ventilator can be miserable, and requires 24x7 support. The support is not covered by Medicare or insurance, but isn't terribly complicated -- suction as needed, reconnect a hose, etc.

If a caregiver messes up, you die, but without it you die. Certainly in the former case, the caregiver feels really bad, but they have to accept that you only made it that far because of their care.

So the question for me is -- how much do I believe the doctors in their assessment of the urgency and how much damage is done by getting the ventilator -- possible loss of speech, possible loss of swallowing and high risk of recurring pneumonia.

Monster Squad

1304Bikes ride on Wednesday:

Ride from Five Points to the Colony for the Cinema Overdrive showing of THE MONSTER SQUAD w/ special appearance by Andre Gower. Movie starts at 8:00pm, we meet up at the church at 7:00pm and leave shortly after. Bring lights. Denver, the manager at the Colony, lets us bring the bikes inside, so locking up isn't a problem. and if we're waylaid by a wolfman, be prepared to kick him in the nards.

To raise a village

re: N&O Editorial: To raise a village 3/19/02

Thank you for your timely editorial on developing village-style, walkable communities. I agree that local governments should not be expected to prop up private enterprises. However we should expect local governments to support this type of growth by promoting conservation easements and landowner compacts, adjusting zoning codes and ordinances to create infill instead of sprawl, and controlling the impact of development on public infrastructure.

Well designed, compact, mixed-use development can dramatically reduce the automobile trips we choose to make. We will doubtless continue to desire to make trips beyond these villages. It is vital that we develop increased transportation choices. As our long trips become less frequent, we will more often find public transit and road bicycling to be attractive alternatives.

Personally, as a recent convert to bicycle commuting and tourism, utilitarian and recreational cycling, I've been amazed and thrilled to discover the practicality of this inexpensive, clean and elegant transportation mode. Biking to work daily, I get close to Blue Heron, Deer, Rabbits and the occasional fox. Biking home at night through downtown Raleigh I listen to the "trolley" on Glennwood, the people queuing up outside restaurants and the train passing under the Boylan street bridge. Spinning through countryside on weekends, I "discover" communities like Micro, Bynum and Seagrove, the beauty of the Haw and Eno rivers. As the Triangle embraces the new growth patterns you've described, I have no doubt that cycling holds great potential for making our travels more efficient and infinitely more enjoyable.

--Adrian Hands

Nopales Pizza

Nopales (No-pahl-ez) Pizza:

Nopales are the fleshy pads of the prickly-pear cactus.

Here in NC, we can buy them in the grocery store (food lion) as:

1. whole pads in the produce section, or
2. jars of de-thorned, thinly sliced strips in water with a few pearl onions (mexican food section)

if you get the whole pads, see the video below

1. preheat pizza stone
2. brush pizza dough with olive oil
3. pour a layer of salsa verde (tomatillo sauce),
4. add shredded nopales, sliced tomatillos*, mushrooms,
5. cover with a white cheese,
6. toss some cornmeal on the hot stone
7. then bake.

serve with jarritos grapefruit (pomelo) soda or negra modelo

* tomatillos look like green tomatoes but have a papery outer skin or husk. remove the husk. they're sticky to touch and tart in flavor.

See also:

• Audio from Morning Edition (Arizona)
• desert-usa
• wikipedia
• cooking video

Bikes for the World Collection on 6/27

Have a bike that you are not using? Donate it!

Saturday, June 27th, 2009
10AM - 2PM

One-day collection at Headquarters Park Offices,
2224 E NC 54,
Durham NC 27713
(located in RTP on Hwy 54, between 55 and Alston)

The mission of Bikes for the World (BfW) is to collect valuable but unwanted bicycles and related material--parts, tools, and accessories--in the U.S. and deliver them at low cost to community programs assisting the poor in developing countries. The bikes donated to our partner organizations provide much-needed and affordable transportation to laborers, micro-entrepreneurs, farmers, health workers, and students. As much as possible, Bikes for the World uses the donated bicycles to help set-up self-sustaining bicycle repair
operations which can make enough money to pay the direct costs for subsequent container shipments of donated bicycles. Thus, we ask those donating the bicycles to offset the cost of shipping the bikes by making a tax-deductible $10 donation per bike.

http://www.bikesfortheworld.org/

Thanks in advance for donating your old bike. We guarantee that it will go to someone in need and will very likely transform a life.

Four things you can do:

1) fwd this announcement to your work, worship, or friends email lists

2) donate cash or a bike, or both, for the collection

3) volunteer on collection day (write receipts, work on bikes etc)

4) help us get this announcement in media outlets (newspaper, TV, radio, blogs)

For more info: 919-688-9347
wennywigley(at)gmail(dot)com
kevin(at)basicbeats(dot)com

Thanks!
Dan Gatti