Sunday, July 27, 2008

Living Forward -- A New Normalcy

Here is a link to an excellent article about "Living Forward" with a disability

and in that spirit, I decided I would just merge my 3 blogs into one, because it reflects who I am, as a whole person. I started out by writing about my life as an ALS patient. Then, I started a blog about my life growing up as a boomer. Then, I recently started a third blog about Rego Park. But then I had less and less to say about ALS, not because I don't have it anymore, but because my life isn't only about ALS anymore. I am forging ahead in a new normalcy. I am lucky to have reached a plateau in my progression, and I hope to stay here for a long time. I have had to find a new purpose, and a lot of new people in my life. Sadly, most of the people I knew before have had trouble dealing with who I have become. Who I have become is not fundamentally different from who I was. But the outside packaging has become too scary and too hard to deal with, for most of my friends and relatives. So I went through periods of intense loneliness, depression, and disappointment. I still go through all of those, but I am able to take it for exactly what it is: that other people can't take my disability or that they can't adjust to the more dependent person I have to be now. I can't just get up and go the way I used to. People have to come to me and do certain things for me. Whether that means that I attracted only takers in my former life, who depended on what they could get from me, and now can't give, or whether these relationships meant more to me than they did for the other person, is neither here nor there.. What is important is that I have a few of the old people who could make the transition with me, most who couldn't, and some new people who never knew me able-bodied, and who befriended me despite, or maybe because of, ALS.

At this time last year, I had hopes -- a cure for ALS, the chance to move to a more suitable [accessible] place to live, fulfillment of a "bucket-list" of things I wanted to do before I die. Now I have no hope of a cure in time for me, I'm stuck by circumstances in a very unsuitable and inaccessible apartment, with no hope of ever being able to get out. And, the bucket-list? Well, let's just say it kicked the bucket! With very few people in my life willing or able to accompany me places, and no more money to pay for alternatives, I have very little hope of going very far away from my four walls, and no hope of my finances ever improving. On the top of my list was to publish a book. I was willing to self-publish to move it along, but that's expensive. It's not likely that a legitimate publisher would pick it out of the millions of manuscripts they receive every year. So I am down to writing 500-word articles for online publication for a few dollars, or gift cards. It's a daily struggle just to have enough to buy groceries and health items, let alone pay the bills and high-interest credit-card debt from before ALS.

Anyway, this is how it's supposed to be with a catastrophic illness. I am supposed to be worried aout where my next penny is coming from. I'm not supposed to be able to buy anything beyond absolute essentials. I'm supposed to be just grateful to be alive, and grateful for the 3 or 4 people who find time in their busy schedules to do my bills or meet me at a museum. I'm not supposed to expect anything more. And I do look at children with cancer, homeless people, and the people in Darfur as much worse off than I.

And I've learned that a lot of those people who come to support groups who claim to be surrounded by friends and "loved ones" are often saying what everyone wants to hear, because the friends don't come as often anymore and the "loved ones" go to the caregivers' group and cry about how exhausted and angry they have become, even admitting that they never imagined what they had signed on for and saying that if they had known, they never would have done it, but in the same breath saying that they don't regret it and would do it all over again [I know "huh?"]. I heard one "loving, supportive" wife admit that her [very wealthy] husband's decision to go on mechanical ventilation made her furios ["what about ME?" she said] [He ultimately went to the ER in crisis, and was not intubated, I imagine on his wife's orders, and died. She is living very nicely on the money he left, which would have been used up if he were allowed to live on a vent, possibly for many more years]. All this makes me happy I am not married, because my decision not to "vent" was circumstantially made for me.

And so I will put everything in this one blog, because I am not just an ALS patient, and the people who read this like to read everything else I write. And maybe one day, I can find the resources to publish a book. That's about the only thing left on my bucket listthat is remotely possible, because I don't need anyone to do it with me. The trips, cruises, the one-day excursions, painting my apartment, making it more accessible, tooth whitening, anything not covered by medicare or medicaid -- forgotten!

Saturday, July 19, 2008

Good News for Disabled/Wheelchair-Bound People Who Love the Beach!

This from my friend Norma Steck:
At Jones Beach Fields 4 and 6, you can get special wheelchairs that go on the sand [free of charge]. And, at certain beaches at Long Beach, as well as Brighton, Rockaway, and Orchard Beaches, mobi-mats have been installed so that wheelchair-users can use the beach. Read about it here

Friday, July 18, 2008

To All My Woman Friends

Two warnings: bottled water in plastic bottles in heat, and vitamin D deficiency

first, an email from my friend Dorothy DiBuduo

Bottled water left in your car is dangerous to women.
This is how Sheryl Crow got breast cancer. She was on the Ellen show and said this same exact thing. This has been identified as the most common cause of the high levels in breast cancer, especially in Australia . A friend whose mother was recently diagnosed with breast cancer. The Doctor told her: women should not drink bottled water that has been left in a car. The doctor said that the heat and the plastic of the bottle have certain chemicals that can lead to breast cancer. So please be careful.
Do not drink bottLed water that has been left in a car
and pass this on to all the women in your life. This
information is the kind we need to know and be aware
and just might save us!!!! The heat causes toxins from the plastic to leak into the water and they have found
these toxins in breast tissue. Use a stainless steel Canteen or a glass bottle when you can!!!


Now for the Great Vitamin D deficiency!

When I was a kid, my mother always told me to play outside. I figured she wanted to get rid of me while she cleaned the house [she was a SAHM and cleaned house every single day]. And I'm sure she wanted to get me out of her hair, but also the sun had benefits. There was an ozone layer to protect us, and little knowledge of skin cancer. And do you remember the days of no children's TV in the afternoon? But another reason was that we got vitamin D from the sun.

Vitamin D is one of those vitamins we don't get enough of from food. We get the majority of vitamin D from the sun. Problem: we are avoiding the sun these days, either by staying inside or slathering on sun block. Especially for pre- to post-menopausal women, this lack of vitamin D can be a big problem.

According to an article in Slate:

It has long been known that vitamin D is crucial for healthy bones. The presence of vitamin D in the small intestine aids in the absorption of dietary calcium—people with vitamin D deficiency are able to absorb only a third to half as much calcium as those with sufficient levels—and calcium is vital to the hardness of bone. The two diseases traditionally associated with severe vitamin D deficiency—rickets in children and osteomalacia in adults—are characterized by deformation or softening of bone. And chronic vitamin D deficiency is strongly linked to osteoporosis, a disease defined by loss of bone density and associated with increased risk of fractures.

the article goes on to say that the vitamin D in supplements or fortified milk is not enough. We have to eat fish like salmon or halibut, and get some sun! This supports the advice of "everything in moderation", and demonstrates how we can really throw the baby out with the bath water. We hear that we should avoid the sun because of skin cancer, so we stay inside or protect ourselves so well, that we keep the sun out and deprive ourselves of the sun's benefits!

This vitamin D deficiency is most damaging to children and women in pre- or post-menopause. In kids, it results in lack of proper bone formation and in adult women, leads to osteoporosis [which has increased]. I say "everything in moderation" when it comes to sun exposure, and let's not throw out the proverbial baby with the bath water.

Wednesday, July 16, 2008

update, clinic visit, research studies

Went for my quarterly clinic appointment monday. my muscle strength is stable, and I even rated higher on some functions. They are going to order a home PT to come in ad train the aides with the Hoyer lift. I had put it in the storage space because the aides were hanging clothes on it [now they hang stuff on the IV pole], but I ave to get it from the basement. The aides have been fighting using it because i think that they are afraid I will get lazy, but what they don't realize is that it can save their own backs. Also the PT at the clinic said that there may be days when I am a little weaker, and it would be better for all of us if we had the option. I know about those weak days because I Have had them already! I told them I do not want the PT through VNS. and they are going to use Bayada.

Dr. Scelsa told me of an interesting finding. They have discovered that ALS patients with higher cholesterol counts have had slower progression. Therefore, he said that maybe I should stop taking the Crestor. On the other hand, he said he expects me to be around for a while, and wants me to protect myself from heart attack and stroke. He seemed to want to think this one through; he was on the fence about this one. Also, according to the latest MDA/ALS newsletter, the high-dose COQ-10 study showed that the enzyme COQ-10 given in large doses provided no benefit to ALS patients. As for the lithium/rilutek combo [I stopped my lithium], Dr. Scelsa told me that he has 17 patients taking that drug, and they are all progressing anyway, so he questions its effectiveness. Nevertheless, they have opened enrollment at several clinics for the lithium/rilutek regimen's first drug trial in the US.

I met Louis last night. His wife has been coming to our support group for a few months, but last night was the first time he came with her. He wears his bi-pap 24/7, but can still speak, so he still teaches college from his wheelchair. I look forward to speaking to him online, because he is very much like me, in that he reads a lot and wants to do whatever he can to get out in the world and be among the living. He gave me a lozenge last night used by opera singers to clear up phlegm. It seemed to work well and he swears by it. He gets acupuncture and massage regularly, which is a luxury I can't afford, and has found some Chinese herbs that he finds helpful, whose names he is going to pass on to me. I really like this couple because they believe in living life while managing ALS. Of course, it helps to live in Manhattan, which they do, and have money, which they do. It is harder for me because I have to take Access-a-Ride everywhere to get any enrichment in my life, and once I pay my bills, there is nothing left for massage or acupuncture. There isn't even enough left for yoga classes for women with disabilities at the Hospital for Joint Diseases. And it will never get any better either, because I can pay only the minimums at best, and those minimums will never go down. It's extremely frustrating to me.

Wednesday, July 9, 2008

Death or Disability -- Which Would You Chooose?


Disaboom Survey Reveals 52 Percent of Americans Would Rather be Dead Than Disabled

Survey commissioned by Disaboom reveals that majority of Americans think life with a severe disability is not worth living.

Denver, CO (PRWEB) July 9, 2008 -- 52 percent of Americans would rather die than live with a severe disability, according to a recent national survey commissioned by Disaboom (www.disaboom.com) (OTCBB: DSBO; www.disaboom.com), the premiere online community for people touched by disability. Disaboom today announced the shocking results in an effort to educate people about why this viewpoint is so tragic.

The survey, launched in an effort to understand America's perception of disability, asked, "Which would you choose: Living with a severe disability that forever alters your ability to live an independent life, or death?" The survey findings noted significant attitudinal differences based on age, income, geographic location, and level of education.

Dr. Glen House, founder of Disaboom, wants to quash these statistics and is dedicated to changing America's perception of disability. House, himself a quadriplegic since his 20s, founded Disaboom to create the first interactive online community dedicated to improving the way people with disabilities live their lives. As the first student in a wheelchair to graduate from the University of Washington School of Medicine, the first person to climb 14,110-foot Pikes Peak in a wheelchair, and also a doctor, inventor, extreme sports enthusiast, husband and father, House hopes that Disaboom will spark a paradigm shift in the way America views disability.

click the title/link above for the entire article.

Tuesday, July 8, 2008

I feel overwhelmed sometimes, especially with paperwork. It gets so easy for me to sit in front of my computer, as the day flies by. I have been writing a lot, and investigating opportunities to make some change for the grocery store. I am trying not to spend money; I want to at least bring my accounts to a place where I can at least make the monthly minimums, and not have to avoid answering the phone. Forget about any discretionary money -- I may never have that. A year ago, I had goals and plans for making my life -- what's left of it -- better. Now I just have to get through the day, and amuse myself enough to avoid getting caught up in negative or self-defeating thoughts.

I'm grateful when someone can make a phone call for me, or even come over for a half-hour to help me rearrange something or bring something I asked them to pick up for me. I make no demands, I don't expect them to stay. This apartment isn't guest-friendly anymore. My weekly visits with my volunteer, Judy, are often my only time out. Last weekend we sat in a park, watched the birds, enjoyed just looking at the greenery, and I listened to two conversations she struck up with two interesting neighborhood characters. I forgot how nice it is to stop and just sit. When I was able, I would go to the beach, even in the off-season, and just sit. Now we were in a little park, but it was still the same kind of experience.

I wish I had taken more time to do this in the years leading up to ALS. Instead, I kept running, and doing anything to avoid just the stillness and quiet. I hated being alone, or at least I thought so. I am learning now, when I am seldom alone, that I valued my privacy and solitude. It's a case of being careful what you wish for. Whoever coined the phrase about stopping to smell the flowers was right. Healthy or sick, disabled or not, everybody needs to stop what he's doing, and take time to be still.

Sunday, July 6, 2008

Many ALS Patients Have High Quality Of Life, Studies Find

ScienceDaily (2008-06-24) -- Patients with amyotrophic lateral sclerosis experience an astonishingly high quality of life. This disease leads to progressive muscular weakness and the clinical course is always fatal. In spite of the continuously increasing loss of control, new studies have shown that many ALS patients are satisfied with their lives.

Saturday, July 5, 2008

Wow! I'm on the Front Page of Associated Content

My article about Tazo Tea is featured today on the front page of Associated Content. That means mucho clickos! By the time you read this it will probably be off the front page. But trust me -- it was there! A bunch of people left comments!
WOO HOO!!!!!