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Today I was scheduled to get my first Spinraza treatment. I've been told
that I am the first Medicare recipient to get treated. Because of a weird
Medicare regulation, I couldn't get treated in the new building at Stanford.
Something about a requirement that wouldn't allow me to be treated more than
200 or 300 yards from the hospital. So Connie needed to schedule a room in
the old building, which wasn't familiar or really set up properly for the
lumbar puncture. I was put on a small examination table that was fairly
uncomfortable. Connie really wanted to do the puncture with me sitting up,
but I haven't been able to set up on my own since I was about 20. They had
people to help but it was ultimately decided to do the procedure with me
laying on my side. Read more... )
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I'm back from the hospital!

What? You want details? )


Oct. 31st, 2014 12:58 pm
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My thoughts on assisted suicide prompted by this article:

Assisted Suicide is More Dangerous...

I've been struggling with this issue for a long time now. I'm a person with a disability and I really do believe that terminally ill people should be able to decide when they want to end their lives. However, with all the talk about reducing medical costs and how much more expensive treatment is towards the end of life, there are huge financial incentives to "allow us to die with dignity". It wasn't that long ago that babies with Down's Syndrome were pushed to the back of hospital nurseries and "allowed" to die from neglect. "For their own good."

For a couple of years in college I worked as a crisis intervention counselor and I know from personal experience that many people who feel driven to suicide just need some time and perspective. This is not to diminish their pain and suffering, but I've talked to people who say they wish to kill themselves. I know, that if I could keep them on the phone long enough, they changed their minds. Sometimes suicide is not a desire to end their lives, but a desire to end their suffering with the only option they believe they have.

Too many people already think my life is a burden to me even though I love my life and the people in it. Too many people have said to me, "if I were you I would just check out." Personally I would be much more comfortable with the whole issue if I was sure that people with disabilities got the services and treatment they needed to live as full a life as possible. If that happened, then I would be more interested in talking about my "right to die."
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My partners and I have talked about this type of thing for a long time. I couldn't see enough of how the controls worked to know whether it will really be useful to me, but I Really Want This!
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It wasn't a surprise, but I'm still oddly sad that this morning I found this in my inbox. For those who missed it, read this for some backround.
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Last night, almost 24 hours ago I passed out. [personal profile] loracs and I were coming back from a movie after having eaten Thanksgiving dinner. I had some gastric distress and felt pretty tired. So I asked [personal profile] loracs to put me to bed. I went to the bathroom, but still wasn't feeling so good. I had her put me to bed and roll me on my side half way onto my stomach. So I could try to squeeze out the Hindenburg of gas still in my intestines.

My head was on a pillow and my nose was a little stuffed, but I felt fine. She put the blanket on me to keep me warm and the sheet fell over my face. I knew it was there but it didn't seem to obstruct my breathing and I only planned to be laying on my side for a few minutes. I thought about asking her to remove the sheet, but I honestly felt fine about leaving it there.

[personal profile] loracs went to the study to give me some privacy, and I got to work. After a while, I started having trouble getting my breath. I wasn't scared, it wasn't a big deal. It was just uncomfortable. So I called [personal profile] loracs. No answer. I called louder and still no answer. I kept calling trying to get louder, but I started feeling like I couldn't breathe at all.

I tried to calm down. I tried to concentrate on breathing, but I didn't feel like I was getting much oxygen. Pippin, my dog, jumped on the bed and did what she usually does which is go get [personal profile] loracs. At least I think she went to [personal profile] loracs. I did hear her bark, but Pippin has been barking more lately because we are doing some home remodeling and she doesn't enjoy all the changes. I tried one more time to call [personal profile] loracs and still couldn't call out loud enough. Things started getting blurry and darker. I felt my throat completely close up. The last thing I remember thinking was: What a stupid way to die...

The next thing I knew, there were three big burly guys in my bedroom asking me questions. "Do you know who the president is?"

"Obama?" I answered.

"How old are you?"


"What year is it?"

I turned to [personal profile] loracs because the answer wouldn't come immediately. She shrugged waiting for my answer and then it came to me. "2013"

The answers seemed to satisfy them. I noticed every breath I took improved my mental state. Turns out they checked my O2 and it was at 92%. 95 to 100 is what I've been told is normal. I already felt like my O2 level was going up. After my bout with pneumonia years ago, I have some experience with these things. The paramedics wanted me to go to the hospital. They checked my heart and it seemed to be functioning normally. I tried to tell them that, because of my disability, I was unable to move my head when my airway got obstructed. I think they thought there was some other cause but I was pretty sure there wasn't.

So I'm fine now, but it was scary. [personal profile] loracs said when she came to check on me I was blue and unresponsive. She dialed 911 and tried to get me to react. She was just getting ready to try what she remembered of CPR when my eyes opened and I seemed to start breathing. I don't remember any of this. I really only came to after the paramedics got here.

I'll call my regular doctor after the holidays just to double check, but I'm feeling physically normal and only periodically freaked out for a minute or two.

[personal profile] loracs is blaming herself and I feel like if she is at fault, I'm at least 50% at fault as well. I thought about telling her to move the sheet, but it really didn't feel like it was obstructing my breathing, until it started obstructing my breathing. It was an accident. A scary accident. I'm certainly glad she was here to revive me.
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My morning attendant gave her two week notice Tuesday. I haven't had to look for new workers much in my life. I tend to hang on to the ones I hire and often before they leave my employment they have another family member or friend who wants the job. To me this is nice for stability sake, but he does make me feel like whatever abilities I need to interview and higher a new worker atrophy before I need to use them. So here I am in the unusual position of needing to higher a new person. In the old days there used to be an informal network of people with disabilities who knew who was looking for work or needed more hours etc. etc. Read more... )
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It could've been worse, I mean there was no bloodshed and no animals were harmed, but the beginning computer class was pretty rough. I had been led to believe, that although it was a beginning computer course most of the people had taken the class before and should have at least a basic familiarity with the computer. They just had some confusion on some of the computer concepts that I would be helping with. Unfortunately there was a very wide spread of computer knowledge/ability. I had one woman who had literally never done anything with the computer and a few people who had managed to do some things, but still are confused by things like how to do attachments in e-mail or download a file. This class was for seniors and people with disabilities, so I expected to need to deal with some accommodations. Anyway two students were pretty severely hearing impaired, but both had lost their hearing late in life so they didn't know any type of sign language. Anyway working with them added a dimension complication and I think I either underestimated my need to multitask in this class or overestimated my ability to do so. I'm trying very hard to be realistic. Most of the students seemed happy with what we could accomplish. I'm positive that the woman who had no computer knowledge was very frustrated with me, but I just couldn't ignore the rest of the class to walk her through everything. I have offered her a one-on-one class to work on basic mouse and keyboard skills. So I can get her up to speed, but she may not be interested after the class she attended. I have some ideas on how to rearrange the class so I can get closer to the students when they need help. Another problem was that I was having trouble seeing the screen from where I was. So it was difficult o give direction. Anyway, I'll work on getting better organized. I have five more classes and then the funding may be ending. I guess this is just another opportunity for growth. :-)
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Off to teach my first beginning computer class at the Ed Roberts Campus for The Center for Accessible Technology. A little nervous, I hope it goes well.
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It's difficult for me to know what to say about the economy and specifically Gov. Brown's proposed budget. There seems to be little or no patience for even discussing enhancing revenue (increasing taxes), even when the "increase" is just going back to tax levels that were easily coped with by the upper 10%. There seems to be some people who just believe wholeheartedly that there is massive fraud and waste in government. They seem to think that refusing to increase taxes will somehow magically get rid of all this "fraud" and "waste". It also seems impossible to have a realistic conversation about any system change. Look at the healthcare debate.

It happens that most of my income comes from benefits. I depend on services like In-Home Social Services (IHSS) which is the program that pays for personal care so I can stay out of a nursing home. Lately, every year during California's budget cycle, I find myself making the same arguments with little apparent effect. Nursing homes cost considerably more per person to pay for than paying for the same services being provided in my home.

Unfortunately, because of long historical precedent, there is a bias towards institutionalizing folk like me even though it has been demonstrated again and again that nursing home care is much more expensive and less humane. In the last three or four years Gov. Schwarzenegger has offered budgets that completely eliminated IHSS. Fortunately, thanks to advocates for people with disabilities and some great state representatives who understand the issues, IHSS still exists even though it was cut last year. Gov. Brown is suggesting deep cuts not only in IHSS but many other programs that people depend on to lead reasonably tolerable lives.

Lots of programs are being cut, I happen to know more about those related to people with disabilities. Some of the consequences of Gov. Brown's proposed budget would cut IHSS once again across the board. It would require all recipients of IHSS to go to their doctor and get them to sign something that says the loss of IHSS would mean that that person would need to go to a nursing home. Why he wants this is confusing since everyone receiving IHSS needed to get a note from our doctors saying the same thing. Seems like a waste of resources all around, but I believe they're hoping the additional bureaucratic dance will cause some people to drop off the rolls.

There is also a suggestion that people with disabilities who live with someone may have any housekeeping hours cut because I suppose they assume that whoever lives with them will do that housekeeping. I know lots of people disabilities who have roommates just to help take care of the rent. Why a roommate should be obligated to take care all that housekeeping is beyond me.

Because cuts are coming to all sorts of programs that people depend on, many of us have been dealing with cut upon cut upon cuts. Gov. Brown talks about not liking the cuts and that we all must share in the burden. What goes unspoken is the cuts proposed could keep people imprisoned in their homes. Taken from their homes to institutions. Necessary medical treatment and medicine will not be given. More people will be homeless or go hungry. All to make sure that a small percentage people can buy so many homes they can't even remember how many. I wonder where the shared burden is there?
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I'm sure everyone is dying to know what I thought of The Lost series finale. Sorry it's taken me a while to get to writing this. I'm struggling with feeling pretty isolated (all my fault, but still).

The thing is that I think I may be one of the few fans of the show who didn't really care how it ended. Well, that's an overstatement. I cared but I didn't expect everything to be tied up in a nice neat bow. I assumed it was going to be left a little ambiguous and I was right.

See I enjoyed all of the mystery of the show. I liked its grandness. It was a Greek tragedy that I reveled in its setup, the characters, the themes. I didn't really want it all to be resolved. So I may not have been as disappointed as some and I'm certainly not as excited as others were about the ending.

Here are the spoilery bits )
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Skip this if you don't want to read me rant about durable medical equipment. OK I have been disabled my entire life. I've also been dependent on a lift that helps the transfer from my wheelchair to my bed and vice versa since I was around 10, I think. I have used the same type of lift for the entire time. The company that manufactured it has changed hands, but the lift has been the same. If you have seen a "patient" lift before it has been most likely been a hydraulic lift. It has a pump that you pump up to lift the a person up and then there's the valve that you open to let the person down. I've had to use those lift at times and I've always had terrible luck with them. They develop leaks and often can't hold pressure. I've hurt myself on several occasions using a hydraulic lift. I much prefer what used to be referred to as a crank lift. Like this:

It uses a screw and there's a crank on top. Crank one way you go up crank the other way you go down. If your hand happens to slip off the handle, the crank stops. It's much lighter than the hydraulic version, less likely to break and tougher.

My present lift has begun to make noises that worried me. When I was in the market for a lift the last time I discovered that my preferred lift isn't made anymore. Last time I was able to purchase a slightly used newer crank style lift. Now that this one is need of replacement, I again can't find list I prefer. I'm somewhat resigned to going to hydraulic, but another feature of many hydraulic lifts is the base of the lift is kind of a U shape. The actual lifting mechanism resides at the bottom of the U (think of looking down at the lift from the ceiling). The base is also able to spread wide in order to get closer to a bed or a chair. I find these bases to be unstable and will often widen when you don't want it to. Now my preferred lift as what's called a C-base. If you look at the base from up above it looks like C. the lifting mechanism resides on one the top or the bottom of the C and there are no moving parts. The base is designed to wrap around the chair to get close or slide under a bed. I much prefer this kind of base and guess what? I can't even get the base I want. Advertisements talk about all these different kinds of lifts, but in reality most of them are slight variations on one model. If I want to lift, I have to take the only one available really. I can't tell you how much I hate this.

Today I find out that the mask I use for my bi-pap will no longer be available they have "upgraded" to a gel type. I tried several masks including gel type and all they did was produce sores all around my nose. Now that they've "upgraded" I can't get the mask I want! Grrrrrr
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I was recently invited by [personal profile] badgerbag to become a contributor to the Hack Ability blog. It's a very cool concept for a blog where people with disabilities can talk about all the "gadgets", strategies, whatever we've come up with to cope or make things easier. I don't think of myself as a "hack" kind of guy, but was very complemented by the invite. I have no idea how much or how often I will contribute, but here is my first post.
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Some of the stuff I didn't sign up for when I was born disabled.

* Sometimes I just want things done my way. I don't care if it makes sense. I don't care if there's a better way. If I could do it myself I'd just do it and save the argument.

* As I age, I seem to be losing my patience. I thought I'd get more patient as I got older.

* There is just not enough room! When I need my mouth stick I want to be able to reach it. When I don't need it. I want it to disappear. Too many things are out of my reach or in my way! Especially when they are the same damn things!

Yes, these are minor matters in a pretty excellent life and I should concentrate on the good stuff. I am not always good at doing the things that would be good for me.

PS This particular post was written three days ago. I thought I lost it to the bit bucket, but when I went to post to LJ the program asked me whether I wanted to recover my text from a previous post and there it was! I'm nowhere near as frustrated as I was when I wrote it, but I thought I'd keep it.
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[personal profile] loracs is worried that I don't post because she's reading my live journal these days. Generally, I don't post when I'm too overwhelmed or depressed. Not that there's anything wrong with people who post when they are either thing. I just tend toward depression and I would rather not encourage it by writing about it too much.

So from the ridiculous to the sublime and back to the to the ridiculous.

my Wednesday )
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Now this Is so cool! Thanks [personal profile] aquaeri for the link. I just wish they showed the wheelchair user pushing their own chair a little more


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