IZEA

45e38fe4f37dbb7d7816d217703971713d18d2562e71754a8f

Saturday, March 21, 2009

Some Thing That Make Me Sad; Some Things That Make Me Glad



ferncohen.com
I am very sad about a couple of things this week. First, I am really sad about the death of Natasha Richardson. It was so quick, so senseless, so arbitrary, so unprovoked. It is a reminder, once again, that life is so fragile and so precious. You can be fine one minute, and dead the next. They called it "talk and die" syndrome. One minute you're fine, talking, walking, refusing medical help, and suddenly, [could be a few hours or minutes later], you're vomiting, you have a severe headache, and may even collapse. Very scary, and very sad. The news reports that I heard, said that impact on either side of the head is more dangerous than impact to the front or back of the head. Hitting the side of the head can actually knock the brain around, and cause blood to collect in a hematoma. I thought back to how many times I have fallen, especially in the early stages of my ALS, knocked my head, and felt just fine afterwards. I think we can all look back and recollect an incident like this.

I am also sad that our sensitive and ultra-conscious president found it so easy to make an politically-incorrect comment on the Tonight Show yesterday. He was actually making fun of his bowling, and said it was like the Special Olympics. His staff called the Special Olympics to apologize even before the show aired. We are all so aware of racial and ethnic slurs, but slurs against people with disabilities still roll off our tongues so easily. I am also guilty of blurting out words like "retarded", "lame", and, ironically, "spastic". This is ironic because "spasticity" [stiffness] is my most troubling symptom.

And here's the thing that makes me really sad [and mad too]: after a huge mess last year, where my bills fell behind, through no fault of my own, I have been really on top of things, and my bills have been meticulously up-to-date. But apparently, my fax machine stopped working properly, and the pooled-income trust received faxes from me that came in all black. They knew it was from me, and neglected to contact me to tell me. If I didn't notice that my balances online showed that the bills hadn't been paid two weeks after I faxed hem, I never would have known. When I called to find out why my bills hadn't been paid, and asked why nobody called to tell me there was a problem with my faxes, I got the most ridiculous answer: "We didn't have your number". I found this unacceptable since they have a whole file on me. I had to give them all to a friend to fax from the office, but the phone calls are coming in already, and I'm embarrassed. And the thing is that nobody has the least bit of compassion when I tell them that the bills are paid through a trust. They probably think I am some rich trust-fund baby, when nothing can be further from the truth! So, late fees are coming my way. In order to let the NYSARC trust know how damaging this was, I will have to send a letter, because nobody was willing to call and make the noise over the phone. Needless to say, I had to shell out money for a new fax. Oh well. In the scheme of things, I guess this is a minor rant.

But here's something that I found really sad, and I hope my feedback helped her [she said it did]. I met a woman Tuesday night whose brother has ALS. She's in the city and he is on Long Island. She hasn't seen him in a year. She can get to him-- that's not the problem. He is extremely depressed and stays in bed in the upstairs of his house. His wife is installing a stair lift for him in the hope that he will go downstairs. The sister I met says that when she calls on the phone, they don't want to talk about ALS. So she says that she sees nothing they can talk about, so there is no reason to visit him. I told her that it is probably depressing him further that his own sister will not come to see him, and why do they have to talk about ALS? I reminded her that there is still an intelligent person inside. So she said "well I can't tell him about anybody else's life, because it will upset him by reminding him of what he can't do anymore. I can't talk to him about politics, because none of that is relevant to him anymore. Same with the arts." I suggested they watch TV or a movie. She was concerned that the media was not relevant to him anymore. I told her this saddened me because he is not his disease, he can still live, and be entertained, and laugh. She said I helped her, that she will go see her brother and try to get him out of bed, or at least watching TV, or read to him. I don't know why people think PALS are not people anymore, that the only subject that interests us is our disease. When I see people, aside from explaining a few things they need to know, I don't want to talk about my ALS. And when I don't hear about their lives, it distances me further. I have people I was very close to, that I either never hear from anymore, or if I do, tell me nothing about their lives anymore. Because of this, I don't feel attached to people I felt a closeness to, before ALS. Or maybe it's a way for them to break the attachment, either purposely or subconsciously. I don't know. What I do know is that many people who were a big part of my life, are not in my life anymore. I'm told serious illness can bring them closer or further apart. I'm happy to say that, in most cases I know, it brings people closer.

I am happy that my friend Andrea is coming today, and I can ask her to help me with some things that have been hanging -- a new rug for my bunny's cage, a package that has to be sent from the post office, pictures to be hung, etc. And Judy is coming for our weekly Starbucks outing. I am also happy about my physical therapy, which started yesterday as an outpatient. The PT is trying to strengthen my stomach, and loosen up my legs. So far, it's the closest thing to a gym workout I can have. I hope to burn some calories.

Saturday, March 14, 2009

Stem Cells, Iplex, Jane Fonda as PALS on stage

The biggest news is President Obama's overturning of the 2001 Bush restrictions on stem-cell research. This action will open about 1,000 stem-cell lines. It's important to know that cures and treatments for disease will not come overnight, but the opening of lines will increase the investigation and research. For more information

A clinical trial for patients with rapidly-progressing familial ALS, has begun enrollment at Emory University. The study uses the drug arimoclomol. go to this link,
Louise took me to see a new Broadway play called "33 Variations" starring Jane Fonda as a musicologist who has been diagnosed with ALS. ALSA had consulted with the cast, so the progression from clumsy walk to cane to walker to wheelchair, and finally to deathbed, was reasonably accurate. Parts of the play were weak, but Jane Fonda's performance was stellar. She hadn't been on the stage in 46 years and, at 71, is not likely to be there again. So it was a privilege to be able to see her

The FDA has decided to allow a few patients with ALS access to mecasermin rinfabate [Iplex] under "compassionate use" rules. Iplex is a blend of recombinant insulin-like growth factor-1 [IGF-1] and IGF binding protein-3, which was pulled from the market when Insmed [the drug's manufacturer] lost a patent dispute with companies that make a similar drug to treat stunted growth in children. Insmed only has a small quantity of the drug remaining.
For more information, go to this link





ferncohen.com

Saturday, March 7, 2009

African-Americans Needed to Help Save a Life of NYC child

ferncohen.com
African-Americans are desperately needed today for a bone-marrow screening to help save the life of a six-year-old in Greenwich Village today [Saturday] Go here for details

Friday, March 6, 2009

Community Choice Act (CCA) is the mos...



Community Choice Act (CCA) is the most important health care reform bill for people with disabilities and seniors. Simply put, it will give people with disabilities and seniors in nursing homes and other institutions, or folks who are at risk of such placement, the choice to live at home with the services and supports that they need to stay in their communities independently.

Become an initial Community Choice Act co-sponsor! Write to your Senators and Representatives in the House:

If you don't know who your senator or representative is, click here

Dear [recipient name inserted here],

I am contacting you today to ask that you take action on a critical issue:

The institutional bias of long term care.

I am sure you are aware that seniors and people with disabilities Overwhelmingly prefer to live in the community with supports rather than Receive assistance in a nursing facility or other institution.

Unfortunately, the current system does not give people a choice and often requires that people go into a nursing facility or other institution to get the assistance they need. In fact the vast majority of our Medicaid Funding for long term care is earmarked for expensive institutional settings, rather than supporting people at home in the community.

The Community Choice Act (S799 in the 110th Congress) changes this by establishing a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability.

This bill would allow the dollars to follow the person, and allow eligible Individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now be able to choose where and how these services are provided.

This legislation is supported by every national organization representing

people with disabilities.

Your support of the Community Choice Act is extremely important. This

legislation is about individual choice and allows an individual to choose

to receive care in the community, rather than be forced into an institutional setting. Please give seniors and people with disabilities a Real choice in long term care.

Sincerely,

Name

Community Choice Act (CCA) is the mos...

All boomers should care deeply about this! Disabled and elderly people should have the choice to stay in their own homes, to "age in place"

Community Choice Act (CCA) is the most important health care reform bill for people with
disabilities and seniors. Simply put, it will give people with disabilities and seniors in
nursing homes and other institutions, or folks who are at risk of such placement, the choice to live at home with the services and supports that they need to stay in their communities independently.


Become an initial Community Choice Act co-sponsor! Write to your Senators and Representatives in the House:

If you do not know who your Senator or Representatives are, click here


Dear [recipient name inserted here],

I am contacting you today to ask that you take action on a critical issue: The institutional bias of long term care.

I am sure you are aware that seniors and people with disabilities Overwhelmingly prefer to live in the community with supports rather than Receive assistance in a nursing facility or other institution.

Unfortunately, the current system does not give people a choice and often requires that people go into a nursing facility or other institution to get the assistance they need. In fact the vast majority of our Medicaid Funding for long term care is earmarked for expensive institutional settings, rather than supporting people at home in the community.

The Community Choice Act (S799 in the 110th Congress) changes this by establishing a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability.

This bill would allow the dollars to follow the person, and allow eligible Individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now be able to choose where and how these services are provided.

This legislation is supported by every national organization representing people with disabilities.

Your support of the Community Choice Act is extremely important.

This legislation is about individual choice and allows an individual to choose to receive care in the community, rather than be forced into an institutional setting. Please give seniors and people with disabilities a Real choice in long term care.

Sincerely,



Name




Jane Fonda Plays an ALS Patient on Broadway in "33 Variations"

ferncohen.com
There is a new play on Broadway called "33 Variations", starring Jane Fonda as a musicologist who has been diagnosed with ALS/Lou Gehrig's Disease. I don't know too much about it, but I have plans to see it next week [with Louise, who works with Actors Equity]. I am anxious to see if they present the disease accurately, as well as how the character deals with the changes. I know that the ALS Association consulted with the cast, so an attempt was made at some authenticity. You can read an entry in Jane Fonda's blog about her thoughts regarding the role at this link.

Tuesday, March 3, 2009

New Memoir Article: How My Bi-Coastal Move Made Me Miss the Oscars

How a Move Between New York and California Made Me Miss the Academy Awards
A move to Los Angeles from New York in my youth was a bigger adjustment than I bargained for, even the three-hour time difference.
http://www.associatedcontent.comarticle/1499426/how_a_move_between_new_york_and_california.html

New Memoir Story: How a Bi-Coastal Move Made Me Miss the Oscars

ferncohen.com
How a Move Between New York and California Made Me Miss the Academy Awards
A move to Los Angeles from New York in my youth was a bigger adjustment than I bargained for, even the three-hour time difference.
http://www.associatedcontent.comarticle/1499426/how_a_move_between_new_york_and_california.html