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I have the same diagnosis as the man who wrote this opinion piece. It gets close to how I feel on the subject.
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I've been disabled all my life. I have not always known why. I don't mean in that, "Why me, Lord?" I mean I didn't have a diagnosis. Not for lack of trying, especially in the beginning. I went through all kinds of tests and back then doctor's were very... let's say "creative" in testing nerves and muscles. No MRI's then either. A test called the nerve conductivity test, takes a special place in my nightmares to this day. Add to this the fact that the hospital we could afford was a teaching hospital. I didn't visit my doctor once without a gang of student doctors poking and prodding me without so much as a how do you do. Then there were all the conversations about my medical health being had all around me, but no one actually talking to me. All of them assuming that I couldn't follow the conversation when I always could. All these things made the medical profession difficult for me to deal with. It's taken a while and to be honest, some big changes in how medical staff are trained to deal with patients to make it even possible for me to have things like a regular doctor.

So my relationship with healthcare is not good and I have largely avoided hospitals including neuro-muscular clinics that might know a little bit more about my disability than a general practitioner. After my pneumonia four or five years ago. Concerns about how my disability was progressing started getting more important. And with a lot of internal struggle I finally got myself to the MD/ALS clinic at Stanford to see what they could tell me. I dreaded it. I was pretty sure there was no good news coming from the clinic, but I am a grown up (sort of) and feel pretty good about this step.

I went to the clinic once and did all right. The clinic doctor asked me whether I wanted to get the genetic test to confirm my diagnosis. I'm old enough that when I got diagnosed there was not a test. Diagnosis was largely a collection of symptoms that suggested I might have this or that disability. I'd been given a diagnosis at 16 but had really done nothing about getting more information. So I said sure let's get the test. They took my blood and I just got a phone call from the clinic a day or two ago. In the time between taking the blood and getting the results, I did feel odd. Not worried or anything. Certainly nothing like the one HIV scare I went through, but just odd. I thought to myself what if I don't have what I have? What would that mean? So very much of my life is a part of my identity as a person with a disability. It's not like I'm not disabled. I clearly am. Whether or not it's the diagnosis I think it is. Anyway, like I said, I received a call recently from the doctor that confirmed that I have what I always thought I have. Nothing has changed, no real treatment. Certainly no cure, but it definitely feels more real. That might not be the right word, more solid, more sure? In another way it makes me kind of laugh. When a doctor calls you on the phone in a very serious voice and tells you that your diagnosis (the one you've had for 40+ years) has been confirmed. It isn't exactly big news anymore, but still it's a part of me now. I know it is part of me and not just a possible part of me.
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An update. Apparently the mother would only accept palliative care for her children because their disability would shorten their lives. I have the same disability and spent a lot of time thinking I wouldn't live very long. I'm 56, so how long does a life need to be to be worth living?
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This article by Marilyn Golden gets to some of what I worry about when it comes to legalizing assisted suicide.
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Because my wheelchair ran out of juice a couple weeks ago, I don't feel like I can trust it. So I've been sticking to home more often than not. My new wheelchair is sitting at Wheelchairs of Berkeley waiting for the part that holds the joystick up to my mouth. I've been waiting for 2 1/2 or 3 weeks for that part so I can actually use my new wheelchair. I've called 3 times trying to get an ETA for the parts with zero information so far. First they were going to call me with an estimated time, but didn't. I called them to let them know they hadn't given me a time and ask them when they would. They said they would call me back and didn't. Called them again, they said they didn't know but if I called them in an hour they would let me know. Called in an hour, they said they didn't know but would call me back. *Sigh*

DragonDictate is working periodically. I'm way behind on a zine I want to write and I'm close to giving up on.

I have completely and utterly screwed up my email and in the process of fixing it I have a feeling I have unintentionally lost lots of needed information. Which is beginning to make me feel like I have lost whatever technological knowledge or ability I had. I'm just feeling stupid around it all right now.

In an effort to be positive. I did have a lovely dinner last night with [personal profile] loracs

Went to BART's Accessibility Advisory Committee (I think that's what they call it) yesterday to comment on their new train car which isn't as accessible as they would like. Found out the car wasn't on the agenda, but I was able to "scope out" the power dynamics of the committee. Now I'm considering getting on it. Did have a lovely time at the Oakland Museum looking at these amazing Native American baskets.

My butt is killing me. I am not a happy boy.
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Reposted from [personal profile] gramina:

I’m walking to raise money for the Alzheimer’s Association, You can see my personal fundraising page at

When my mother was diagnosed with Alzheimer’s, it was the Alzheimer’s Association that gave us detailed information on what to expect, and it’s the Alzheimer’s Association that started the Safe Return program (with Medic Alert), so that she and her husband had matching bracelets and if she wandered, she could be found more quickly. They gave information and help and support to our family when we really needed it.

They also fund research into ways to prevent, ameliorate, or cure Alzheimer’s disease. Since 1982, — the world’s largest nonprofit funder of Alzheimer’s research — has committed $292 million to more than 2,000 grant proposals.

My mother died of Alzheimer’s disease in May of 2012.

My family tends to be long-lived; I should have had another 20 years of my mother’s wit, compassion, intelligence, insight, and love. Instead, Alzheimer’s stole the last ten years of my mother’s life from her and from her husband, from me, from my sister, and from everyone who knew her.

No one should have to go through that.

By 2050, though, as many as sixteen million people are expected to have Alzheimer’s disease. That’s not just sixteen million lives cut short, or sixteen million minds deprived of their vision, clarity, power, and creativity. It’s sixteen million times all the children, partners, lovers, friends, and caregivers whose lives are catastrophically disrupted, whose hopes and dreams and expectations for their own and their loved one’s future are broken and betrayed.

Please help me help the Alzheimer’s Association continue to fund research and support patients and families. If you can donate, that’s wonderful — the smallest amounts add up faster than you would believe. If you can’t donate, please feel free to signal boost — I appreciate it a lot.

Thank you, so very, very much.
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"You see, I had this space suit.

How it happened was this way: 'Dad,' I said, 'I want to go to the Moon.'
'Certainly,' he answered and looked back at his book. It was Jerome K. Jerome's Three Men in a Boat, which he must know by heart.

I said, 'Dad, please! I'm serious.'

This time he closed the book on a finger and said gently, 'I said it was all right. Go ahead.'

'Yes . . . but how?'" From Robert A. Heinlein's Have Spacesuit - Will Travel

That's the trick, how?

Now I've been a science fiction fan for as long as I can remember. In fact, there just isn't much that I read for pleasure that isn't science fictional. I read other things, but it does take effort on my part. Science fiction never really has. It's my native land. It's my hangout. It's my home.

I think part of the accepted belief system that goes along with being an SF fan is a basic belief that people should be out in space, colonizing planets, building space stations, living in places other the planet Earth. Often the same books that instilled such a strong desire in me to go to the Moon, go to Mars, go out there, also assumed only the very able-bodied would be allowed to go. Folks like me were "obviously" unsuitable for adventure out towards the stars. We would stay home.

The fact is, I probably will be staying home. Long gone are the days when it was assumed people would be living on the Moon or Gerard K O'Neill L5 colonies. The United States government hardly has launch capability anymore. Let alone the desire to put people on Mars. So we are left with dreamers, wacky millionaires and private companies to take a shot at exploring the solar system. I think we'll do it, eventually. Not likely in my lifetime and even if we did manage it. I'm not a likely candidate for astronaut adventurer. No vacations on the Moon for me. Yet I still dream of going.

A while ago I found a website that is the Internet presence for an organization that is proposing colonizing Mars. It's a one-way trip. Those who volunteer won't be coming home. This is a major drawback to me because I am enjoying my life these days. I have two fantastic women in my life and I don't in any way want to leave them permanently. So I'm stuck with competing desires. Desperately wanting to go out there and desperately wanting to be with the women I love, the family I have and the friends who add so much to my life.

I suspect that if there was any real chance I might get selected, I might not have applied. However, knowing there is a realistic possibility that people will strike out for Mars in my lifetime, I could not just ignore it. So here is what I did.

It's not my best speech on video, but they required certain information be covered. They only gave 70 seconds to do it in and I think it's more important to me that I asked rather than I asked with elegance.
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Partly because I'm a little worried about the pilot program to put those on Medi-Medi into a managed care program and partly because my wheelchair is getting pretty old, I am beginning the process of getting a new power wheelchair. It begins with getting a prescription from my doctor so I can get an appointment with an occupational therapist who evaluates what I need. Got the prescription, check. Prescription faxed from my doctor to the durable medical equipment guy (in my case Wheelchairs of Berkeley), check!

At this point it was my understanding that Wheelchairs of Berkeley would contact the Occupational Therapist they work with to give me possible times to meet. Instead I just got off the phone with Wheelchairs of Berkeley who notified me that I had an appointment at 3 o'clock on the 23rd. Apparently my schedule isn't really important. I suppose I could've insisted on rescheduling, but I do want to get this over with, so I will cancel my therapy appointment to go to the OT. Not too patronizing they would assume that I would just make myself available. I'm probably annoyed more than I should be, but these or the little things that make my life so full.
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Lemme es'plain:

[personal profile] loracs mentioned on Facebook our misadventures last Sunday, I thought I would give details. We decided to go out for a late breakfast (I think 1:30ish in the afternoon counts as late). So we got in the car to go to an Italian place near our home that we thought served breakfast that late. [personal profile] loracs parked near the place and hit the button that opens the door and deploys the ramp. I backed up and did my dance to get turned around and leave the car. I wasn't being as cautious as I can be at times, so I didn't notice that the door had opened, but the ramp hadn't deployed. I drove out the door and promptly fell forward. Fortunately, the curb was pretty high and my foot rests are (apparently) very sturdy. My foot rests sort of caught me so that my front wheels were on the curb and my back wheels were in the car. I couldn't move forward or back. I couldn't even push the joystick even if I had wanted to because my upper body was thrown forward and I couldn't pull my head back. If I hadn't been wearing my seatbelt, I would have been pitched to ground. I called [personal profile] loracs and she gasped on seeing me. She asked me what we should do and I told her I thought we needed help. I thought she would find a passerby or go into the restaurant to find help. She immediately started shouting, "Help! Help!" Three people on the street rushed over. They asked what they could do and I told them to help lift the front end of my wheelchair so I could back up into the car. Because of my misadventures a while ago when my wheelchair decided to do the samba in a sandwich shop, I told [personal profile] loracs to turn the power off on my wheelchair. She did and they started lifting the front end of the chair. We forgot that the motors had to be disengaged before my wheels would move freely. So we asked the two good samaritans to wait one second. [personal profile] loracs got around back of the wheelchair and disengaged the motors. Now that I was freewheeling they pushed me back into the car. [personal profile] loracs reengaged the motors so that I wouldn't roll right back out. I thanked my rescuers. It took me several minutes to recover my equanimity, [personal profile] loracs helped me get reassembled. My tray had fallen to the curb as did some cushions I have under each elbow. [personal profile] loracs tried the ramp again, this time it cooperated. I exited the vehicle and was surprisingly unharmed except for my dignity. :-)

It's not like this whole episode was fun, but it was better than it could've been. Unlike many times in my life everyone paid attention to what I told them. No one just took over, they waited for me to tell them what I needed and did what they could to help. [personal profile] loracs paid particular attention to my instructions and gave helpful suggestions. For example, I had completely forgotten about disengaging the motors until she mentioned it. I got through everything relatively unscathed. Yesterday while out and about on my own, I did notice a certain "punchiness" (if that's a word). I was overly careful going over bumpy sidewalks feeling like they would drop out from under me, but that will fade eventually. I want to thank [personal profile] loracs and my helpful strangers (I wish I had gotten their names, but I wasn't really myself.) Over and above the help I received I feel very respected.
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Yesterday I went to see Watt, a play by Samuel Beckett being performed at the Zellerbach Playhouse with [personal profile] wild_irises and [personal profile] waywardcats. Beckett happens to be a favorite playwright of mine, so I was thrilled to go. Although short, the play was well done and I enjoyed it. I had previously arranged with [personal profile] loracs to pick me up around 10:15 thinking that the play would be longer. Before the play began, we called [personal profile] loracs to let her know that I would need to be picked up earlier, but all we got was voice mail. After the play, we all went to Bancroft where I was to be picked up. Last night was amazingly cold and after waiting for a while, we decided to head for Smart Alec’s (where we had dinner before the show) and shelter.

Now it gets embarassing )
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My sister Linda is getting around the house without the walker. She's still having some balance issues, but she's recovering so much faster than I'd ever expected.

When you drive your wheelchair with your mouth, it really *is* hard to walk and talk at the same time.

My computer died and has now been resurrected, but a large portion of my deathless prose is gone. Someday I'll learn to back-up.

There should be a company/non-profit with gadget savvy folk who one can go to and get them to modify consumer electronics or help mount equipment to my wheelchair or maybe build a little doohicky that's probably only useful to me and maybe a couple hundred other folk. I'm thinking today about a wireless headset that can dial into different frequencies. So I can use it with my cell phone, switch to my computer using Dragon Dictate while listening to music on my headphones. Yes, I know there ways to work some of this already, but I want it in one gadget.

Today, I really missed functioning arms.
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Woke up this morning with cellulitis again. I got right on my antibiotics and I'm feeling better, but pretty exhausted. I was wondering why I was almost crying because I couldn't finish a quest in Asheron's Call. I tend to get emotional when I have cellulitis.

I got a notification from the county late last week that my attendant would be terminated unless she finished the IHSS Provider Enrollment. Which basically entails getting fingerprinted, background check, sitting through a training film (which had very little information about the actual job. But had lots of threats if one were to misrepresent hours worked.) And filling out a few forms. All of which had been done last year, but the notification may sound like to clear this up before the end of the month or my checks would discontinue. Calling IHSS was an adventure in itself. Talk about voicemail hell I've never worked so hard to make a phone call before. Anyway, turns out that we were fine, but the county had sent this threatening letter to everyone who received IHSS Whether or Not They Already Completed Provider Enrollment. Ain't that special?

Friends are coming over today I will probably watch them all help Carol pack up Betty's place in preparation for installing a new floor. I'm actually looking forward to a low key day with not demanding company. I hope you all have had a good holiday.
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Have you ever had one of those days? Where everything seems to be going wrong and it feels like there's nothing that you can do that will make things go right? I seem to be having one of those days. Weeks? Months? While getting up this morning I got a call from a medical equipment provider who needed to know all these Medi-Cal/Medicaid numbers and other information that I didn't have readily available. I ran my morning attendant all over the place trying to gather the information. Made her late for school and half the things I wanted to get done this morning either didn't get done or didn't get done correctly. Feeling really disabled and grumpy. Hopefully I will be seeing [personal profile] serene this afternoon and maybe she can rescue me from my incompetence.

To leave on a positive note I was interviewed by an AP reporter on behalf of the Center for Accessible Technology talking about Internet access for people with disabilities, especially online games. I think it went well, I have no idea when or if a story will come out of it.
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The most recent episode of Glee, the new Fox television show about a struggling Glee Club, has stirred up some controversy in the disability community. At least in my corner of the disability community. You see a continuing character on the show is a wheelchair user, at least the character is a wheelchair user. The actor playing this part is able-bodied.

Possible spoilers ahead )
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Yesterday was interesting, a bit frustrating, and punctuated with a little bit of fear. Not that you'd know from the news, even the local news, but there have been a series of protests against the California governor's proposed budget. A few months ago he sponsored some ballot measures that were put on the ballot. They were put there as a condition of getting one Republican to switch his vote in order to pass the budget. As you may not know California is one of the few states that requires two thirds vote in order to pass the budget every year. So even though the vast majority of our state legislators are Democrats, Republicans hold a disproportionate amount of power because it is necessary that some of them vote along with Democrats to get to the budget passed. So anyway, there were several ballot measures related to the budget. All of them failed except one. It will not allow legislators to vote themselves a pay raise when there is a budget deficit. It doesn't require that they actually cut their wages, just not give themselves raises.

Read more... )
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I just thought I'd drop a note and let everyone know I'm still alive. I have been particularly depressed the last few weeks. I'm coping and what energy I do have has been going into fighting California Gov. Schwarzenegger's proposed budget cuts )
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Good news: I have a new 500 GB Hard drive!

Bad news: I'm not sure when I'll get it hooked up.

Good news: I have a good new morning attendant! I'd say great, but its early (one week) and it feels a little direspectful to Stacy to say great yet.

Bad news: I have Cellulitis again.

Good news: Anti-biotics in the house!
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A friend of mine conceived and produced this video (with some camera help from [personal profile] loracs) after hearing Karl Rove claim that Senator McCain couldn't use a computer because of injuries he received as a POW. I'm a star!


Apr. 28th, 2008 07:50 pm
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Grrrrr! I'm not sick, I'm disabled. There's a difference! I know I'm probably over reacting, but grrrr!


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