Thursday, January 29, 2009

I Bet Obama's Had to Hire a White House Chinese Chef

this was an email I received today from my former Assistant Principal Marc Saltzman:


So far we have:

Rahm Emanuel - Chief of Staff - Jewish

David Axelrod - Senior Advisor to the President - Jewish

Ronald Klain - Chief of Staff to the Vice President of the United States - Jewish

Larry Summers - Economic Advisor to the President - Jewish

Paul Volcker - Economic Advisor to the President, Former Head of Fed Reserve - Jewish

Tim Geithner - Treasury Secretary - Jewish [we are not sure about this one]

Peter Orszag - Head of Budget - Jewish

Have you noticed that Obama and Biden are not so much assembling staff, as gathering a minyan?

What does everyone think? Should they scout out the best Chinese takeout for cabinet meetings, or would it more efficient for Obama to hire a Chinese chef for the White House? I vote for the latter, because in the long run, they will be eating so much Chinese food, they might as well wok it up in-house!

Update January 29, 2009

Did anyone watch the new TV show "Homeland Security" the other night? At the end, they had a story about one of the Customs and Border Patrol agents who had to stop working up in Buffalo because he was diagnosed with ALS, and they showed a huge fundraiser they had for Jay. I had seen a request for donations for Jay on Facebook too. This was more exposure on national television for ALS.

A couple I know -- the husband has ALS -- has been resisting the PEG feeding tube. Now, he isn't eating enough because it's too exhausting for him, and it already takes him two hours to eat whatever he is eating. They are thinking about the feeding tube now. The problem is that he is so progressed that his breathing is weak, which makes it more risky to do the procedure. This scares them, although there are certain accommodations that can be made. I was advised early on to get the PEG tube even before I needed it, as I was advised about getting equipment before I needed that too. So I got my PEG in 2005 way before I needed it. I got good advice, and I'm glad I followed it.

One piece of advice I didn't follow was to put on my Bi-PAP for a few hours during the day, especially for naps. I started doing that this week, and I must say it makes a nice difference. When I use it, I am less likely to doze off during late morning, and it gives me a little more energy. I guess I was resistant because I keep hearing that right before the end of life, PALS [people with ALS] are wearing the Bi-PAP 24/7, and when that fails to help, they have to make that all-important decision of whether or not to get the tracheostomy and go on mechanical ventilation. So I viewed use of the Bi-PAP for anything over and above overnight sleep time as a step closer to the end. But, in reality, I have only been sleeping about 6 or 7 hours, and should really use the Bi-PAP more hours anyway. And, sitting around wheezing and/or short-of-breath because I was resisting the Bi-PAP was a stupid and uncomfortable option. My seatbelt was busted for several weeks, and finally repaired yesterday. While the mechanic was here, I asked him to adjust the footrests so they don't keep falling down.

A little advice about credit cards and loans. Several months ago, I negotiated with one of my credit cards to take my old debt and pay a lump sum less than the balance, and get rid of the card. Well, they graciously let my bank know, and the bank cut down my credit limit on my overdraft coverage [for which I was never delinquent, by the way]. I don't really care because I planned earlier last year to never again use the overdraft coverage and pay it down. However, I learned that when you are delinquent on one debt, they can inform your other creditors, even if you have had a pristine history with all your other creditors. So know that these credit card companies are getting very devious in this recession!

The VA has listed ALS as a presumptively compensable illness, meaning there may be an association between it and military service. This is an issue that was the topic of ALSA advocacy last year in Washington DC, so bravo for ALSA.

Friday, January 16, 2009

Let's Hear it for Boomer Hero US Airways Pilot

On Metroblogging NYC I pay homage to a "mature" boomer pilot who was the real hero in the "miracle on the Hudson" yesterday. Click this link!

US Airways "Hero" Pilot-- Let's Hear it for a Mature Professional!

In a time of most industries, especially airlines, throwing mature [read higher-paid] employees to pasture, read my tribute to the hero pilot of yesterday's "miracle on the Hudson" Click the above title-link

Thursday, January 15, 2009

First Neurons Created From ALS Patients

Although Obama promised to lift the 7-year ban on embryonic stem-cell research, it almost doesn't matter. Scientists have found a way to make stem cells from the skin cells of ALS patients. Click on the link above to read more.

Wednesday, January 14, 2009

Everyone Needs Emotional Safety

By now, everyone is familiar with the proposed subway, bus, and railroad fare hikes by the MTA. But did you know they are also planning to double Access-a-Ride paratransit fares too? This is crazy because most disabled people are below the poverty line, and are the most underemployed segment of the population. So, if this fare ike goes through, a round-trip of $4.00 will now be $8! This is a lot of money to some disabled and/or elderly people, and will force a lot of paratransit into isolation and house-boundedness because they won't be able to afford to go anywhere. But Manhattan Borough President Scott Stringer is earnestly fighting this, alongside Senior Citizen and Disabled advocacy groups. Let's hope his efforts are successful. Stringer has been holding hearings and town hall meetings on the subject.
A fare hike on paratransit will be a hardship on clients, myself included.

Everybody needs a safe place to let off steam and vent, without being judged or preached to. And everybody needs a place where they can express disappointments and heartbreaks, and - yes- even anger, without friends and loved ones getting all sensitive thinking they recognize themselves, and either getting on the defensive, or getting all angry and preachy and coming back with scolds like "you know, there are people worse-off who don't complain" or other criticisms. Worse yet are the ones who preach "you should keep a gratitude journal" or "you should find something positive". Everybody, sick or healthy, has the right to some anger as long as it is vented in a healthy way. The definition of "depression" is "anger directed within" or anger "held in". Many people who suffer from depression are people who never seem to get angry. However, I am reminded once again that everybody has to find out where, and to whom it is "safe" to let out true feelings, and often it is only to people who have been through, or are going through, the same experience. Anyway, we know there are people worse off than we are, we do think about positive things, we are grateful for what we have, etc etc. I for one, don't sit around in a constant state of outrage. But I've decided to take some of the raw emotion and express it privately, in safer places. I have found out that a blog is not safe at all. And a difficult lesson I had to learn was: sometimes the very people who encourage with "You go girl!" and "we love your feistiness" are the very ones who turn on you later, saying "you're just too angry". I had a former neighbor who was also a close friend, end our association last month for this reason. Here was a person who was most supportive and encouraging. Now the friendship is over. I will never trust anyone again who tells me "You go, girl!". And of course I begin to wonder "is she just able to verbalize what everyone else is thinking?" She claimed in her comment that people weren't coming around anymore because of my "attitude". Maybe this ex-friend just spoke the truth, and once I got over the shock and hurt, I was actually grateful. I remembered that saying about the truth setting you free, etc etc. So true!

One thing I have learned is how unimportant it is to accumulate "things" that are no longer useful to me. Dust is an issue for my breathing, and the aides are not obligated to do more than light housework. I was shocked when one of the aides swept under my bed and behind my microwave and pulled out dust balls the size of animals! The aides are not supposed to do heavy cleaning, so I can't force them to do this. When they do, it's a bonus. So I think I will have to hire a cleaning person at least once a month to move furniture and do heavy cleaning, OR pay one of the aides extra to do a twice-monthly deeper cleaning. This week I also donated my remaining craft supplies and stereo/boom box that hasn't been used and has been collecting dust to the Brooklyn Center for Independence of the Disabled [BCID]. It felt great! I need to unload some books -- a very hard thing for me to do -- which are some of the worst dust-collectors! But, on the other hand, nobody can really appreciate the pain of getting rid of these things. It's like watching parts of me die, because it's an admission that I no longer need these things because of the things I will never do again. List go around in my head-- I will never again: go on a date, do crafts, go to a gym, travel, go to a concert or live theater, etc. These are things disabled people can do, but I can't do because of my circumstances of being alone. So every time I look at something at home and say "I haven't worn that, or used that in 4 years, and probably won't again", it's a part of my life dying.

I am kind of cocooning for the winter. I am afraid of getting a serious infection so I am taking care. I actually received an invite, through a disabled organization, to attend one of the inauguration parties. But without a hotel room and a ticket to the Inauguration, it really becomes impossible. Hopefully in May, I can go to Washington with ALSA? I really want to be involved in activism and make a difference.

Friday, January 2, 2009

I Usually Don't Make Resolutions, But...

Call it a resolution if you must, but what I would like to do in 2009 is to repair relationships that have been suffering, especially if my attitudes and actions contributed to the damage. It will involve forgiveness on my part, listening to others, and putting myself out to initiate contact in some cases. I would also like to stop finding fault with those who are in my life, especially people who are there for me.

Yesterday I used relay calling to wish family and friends a happy new year. Unless you listen to the operator, it sounds like a sales call, so people sometimes hang up on the operator. But it's the closest thing I can have to a telephone conversation. I type, the operator reads what I type, and the other person talks, and the operator types what the other person says. The advantage over instant messaging or email is that you don't have to wait until the person is online, and the other person can feel like he is having a real phone conversation, even though there are slight delays [although those operators are fast, and I can type while the other person is talking, so it flows nicely]. It's mostly the older people who don't "get it" at first.

I have always found that, when I am in a funk, it helps to call, email, or write to someone I have not had contact with in a long time. Also, this morning I did something I don't do often enough, and will try to do more: I thanked Lynette dor taking such good care of me and cleaning up my pukey messes yesterday.

Thursday, January 1, 2009

Happy New Year 2009


I'm hoping 2009 is better because 2008 didn't end on the best note. Haley walked the dog in the very early morning Christmas Eve Day, and slipped on the ice. She ended up in the hospital for 3 days over Christmas with a huge gash in her head, and a concussion. Christmas for the Albertarios was not great, to say the least! And Haley is suffering from headaches. I hope she feels better soon.

I woke up on Monday with what seemed like a raging cold. By Wednesday [New Years' Eve], I had full-blown stomach flu. My aides are my unsung heroes, cleaning up after me. As I write this, I am starting to take in a little solid food at a time. But yesterday, I could have nothing but clear liquids. I still feel crappy, and really weak. When Lynette came on duty last night, she ran out to buy me some Pepto Bismol, which gave me some relief. But, instead of welcoming the new year at Nancy's annual party, we stayed home.

Home! I am really depressed looking at this cluttered, dark, rundown place. Years ago, my dad asked me to move into his house, but I thought it would be isolating. Well, there could be nothing more isolating than a studio apartment in Queens, with no sun exposure, and cluttered up with junk. Paradoxically, I probably should have given up some of my "independence" and been around family. But who knew? And it might have upset my dad way too much!

I have been suffering a certain malaise the last couple of weeks. I have some wonderful people in my life, who sent me some outrageous gifts!! But yet, I am sinking into feelings of hopelessness and uselessness. I'm not optimistic about the research and in the back of my mind I am deathly afraid that this is more than the stomach flu, but the final blow that will kill me. I look at my Chelsea and worry what will happen if something happens to me, even though she will go back to the rescue and will be in excellent hands. She is so attached to me.

I haven't been this scared in a very long time.