What do you say to a dying man?

Since I was planning to write about this topic, I came across this article and thought I would put it out there so those of you who are interested, can read it, mull it over, and then read my response to it later, when I get around to it. I agree with the writer of the article on some points, but not on others. Then again, he is newly-diagnosed, and I am in my sixth year since diagnosis, so I have a whole different perspective. To read the article, click on the title.

Nancy O'Dell, Outings in a Wheechair Van, I May See the Beach

Nancy O'Dell, co-host of TV's "Access Hollywood", lost her mom recently to ALS. Despite her mom's passing, I am hoping Nancy will continue to fight for an ALS cure. Read more about that, here. The dilemma with ALS is that often after the death of the patient, the family and friends seem to pull away from the ALS community. Except for the small percentage of "familial" ALS cases, I guess most people whose lives have been touched by ALS, feel that the disease will probably never touch their lives again. So they go back to raising money and awareness of cancer, AIDS, or some other disease that is much more likely to affect them or a family member or friend. They prefer to forget the whole ALS experience. And, since most ALS patients die within two years of diagnosis, there isn't a lot of long-term follow-through.

The best possible arrangement an ALS patient can possibly have is a wheelchair van. But not everybody can have this, because either they can't afford it, or they don't have a caregiver who can drive it, or both. In my case, I can't have a wheelchair van for both of those reasons. And that is why I have to depend on Access-a-Ride, which must be scheduled a day in advance, and can be terribly unreliable, or public buses, which can be inconvenient. In my case I also don't have a lot of companions who have the time to spend going places with me, while putting up with those modes of transportation.

Last Saturday, I had a special privilege. My friend Valerie, who unfortunately lost her husband to ALS last fall, picked me up in the wheelchair van she still had, last Saturday. Everyone knows two of my favorite places are Trader Joe, and the beach. Well, Valerie, her 6-year-old daughter Layla, and Louise and I, went in the wheelchair van to Trader Joe, but the rain ruined our beach plans. What a gift to be able to pull into the van without having to do a difficult transfer, ride where we wanted, and when we wanted, on no set schedule! Just a laid-back afternoon of Trader Joe and snacks at a Chinese bakery in Forest Hills.

The good news is that it is going to be 70 degrees today, and Valerie is going to pick me up again for a trip to the boardwalk. I have not seen a beach in three years, and I have been very depressed about this! By the way, disabled people can actually go onto the sand at Long Beach, Brighton, Coney Island, Rockaway, and Orchard Beach, due to mats they have installed. For all ththose skeptics who don't believe me, or who don't think a wheelchair-bound person can enjoy the beach, check out this article or this one, with great pictures
and also a listing of exact locations for the mats. I might add that Forest Hills is one of the many accessible stations of the Long Island Railroad [LIRR], which goes to Long Beach and Jones Beach [the latter with a bus connection from Freeport] For the webpage to look up a list of accessible LIRR stations, click here.

Since Valerie has to return te van this week, today will be my last shot at going in such style. I am really looking forward to it!

Any Twitter-ers Out There? Please help!

ALS/TDI [ALS Therapy Development Institute] has an opportunity for anyone on Twitter [go to twitter.com to join] to join in the campaign to get a $100,000 donation from Hugh Jackman!

Go to this link for instructions. You have to tweet often, and ask your followers to retweet! Thanks!

Fern Cohen Discusses Blogging vs. Twitter

Fern Cohen Discusses Blogging vs. Twitter

ferncohen.com

Update April 4, 2009

Louise brought me to see "33 Variations", a play about a musicologist who has ALS. It was my first time in a Broadway theater since late 2003. It was exciting to me to be in a Broadway theater again, and even more exciting still to see the 71-year-old Fonda in her first Broadway play in over 40 years. There is no excuse for a wheelchair-bound person to stay away from Broadway. All the theaters are accessible, and there are wheelchair spots in every theater. You can book wheelchair spots online or by phone, and as a wheelchair user, you sit in the orchestra section, and your companion gets a seat as close to you as possible. And the best part is that you both [wheelchair-user and companion] get the lowest-priced ticket. I also joined a program through the Theater Development Fund [TDF], called TAP for people with disabilities [PWDs], which sends lower-priced offers every month. So there is no reason for PWDs to stay away from Broadway, or museums or other attractions for that matter. They are all accessible, except for the Lower East Side Tenement Museum because of the landmark status of its building.

One weekend when Judy could not come, Louise came over to take me to Starbucks. My friend Andrea came one Saturday, stayed the whole afternoon, and really brightened my day. My former student Jessica Aguilar came last Sunday to help me with some reorganizing that really made a difference. And my weekly visits with Judy are always something I look forward to. I still need to measure the width of the hallway leading into the bathroom so I can hang curtains from a tension rod. We had to take off the bathroom door so I can get up to the doorway for my once-weekly trip to the bathroom. And, I went with Judy to shop for a cotton rug for the bottom of Chelsea''s cage, but all we saw were rag rugs. Then Debbie sent me a rag rug, which we "installed" yesterday. Chelsea slept in her litter box all night. She will have nothing to do with the new rug. It probably has to do with the nubby nature of the rug. Her own cotton rug is in the laundry, and there were no rugs like it in Bed, Bath, and Beyond. So my aide and I switched out a rug that she loves to lay on, which was on the floor, and put the rag-rug on the floor. Problem solved!

I have my portable vent. on a chair when it is recharging; otherwise, it is on the back of my wheelchair, but it needs two people to put it there. The purpose is to enable me to go out for up to six hours when I am totally vent-dependent, but right now, I use it for when I am out and feel short-of breath or sleepy from not enough oxygen. And the ventilator has to be taken on and off the wheelchair to be recharged. Today I am mostly using the vent [non-invasive] at night. This is, of course, next to my cough-assist machine. So much equipment!

By "vent", I mean NIV [non-invasive vent], which goes onto my nose and/or mouth with a mask. I use a Bi-PAP at night, which is similar to the C-PAP that people use for sleep apnea. My "vent" is also a NIV. This is not to be confused with a tracheostomy and mechanical ventilation, which some patients opt for, when NIV no longer works. This is considered life-support and is a big decision. Stephen Hawking is on mechanical ventilation. In pictures of the famous physicist, you can see the tracheostomy tube coming from his throat. Most people who opt for this, have a ton of money to pay for care, which is not covered by Medicaid or most insurance plans. A patient on mechanical ventilation needs either trained nurses and/or trained family caregivers to be present all the time, because the patient can never be alone. In the absence of that, the patient must live in a nursing home. Since I refuse to live out my life in a nursing home, I have a health-care proxy that instructs that I am not to be trached and mechanically-vented. There are many people I keep in touch with, on mechanical ventilation, most of whom have a spouse who does most of the care, and nurses to fill in, even children who can do the job. Many of them run fund-raisers throughout the year to raise the money to pay the bills. With stem-cell research being much more on the horizon, a cure or improved treatment is more imminent, so they want to go on as long as they can. As for the patients I correspond with in nursing homes, they are not happy. They say the staff doesn't understand ALS, are especially mean to patients who can't speak, and are especially isolated because their friends and relatives are uncomfortable visiting nursing homes. From my understanding, good nursing homes with compassionate staff are few and far between. I even correspond with a patient in a nursing home where the staff never brushes his teeth. For Christmas, all he wanted was someone to brush his teeth, so a friend came over to do just that.

On the other side of the spectrum, I know of a man in Manhattan who is on mechanical ventilation and lives with his wife and a live-in aide [paid privately]. He has a push chair, because he can't use his hands anymore, and so he can't drive a motorized wheelchair. Every day he goes out -- to the park, to a movie about twice a week, out and about, etc. Every situation is different. In his case, he wrote a book totally using a computer that works with eyebrow movement, because his eyebrow is the only thing he can move. He uses the book sales [the book is called "Not in Kansas Anymore"] to raise funds for his care. He is the epitomy of strength and resilience. Most people with ALS will tell you that before their diagnosis they would have said "I'd rather be dead than live like_____." You can fill in the blank with any scenario/phase of ALS. For me, it could have been "I'd rather be dead than not be able to wash my hair three times a week/take a shower daily/not be able to go to the beach/not be able to drive, etc. etc. BUT when you get to each stage, you adjust, you accept, you are happy to be here.

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.

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

Here is a link to a good article

And an article on stem cells and cancer

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