Saturday, April 4, 2009

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.


Lianne said...

Dear Fern, I think you can teach me a lot. It is a comfort to read: of course I still can go to plays, musea and things. I am going to read all your blog.
I hope I will be as positive as you are. Love Lianne (Goes, The Netherlands)

careysue said...

Dear Fern,

Thank you so much for stopping by my blog!

To tell you the truth I don't know anything about ALS. I'm just starting to learn. My dad and mom were here this weekend and he isn't talking about his diagnosis...he doesn't seem to really understand it yet. The fact that he's 71 and just diagnosed does it mean he will progress fast? He seems worse than he was 2 weeks ago. He's been going to doctors for about a year and he is just diagnosed.

Please email me if you'd like, you are such an inspiration, I don't think my dad will be as positive.

We have lost both of my brothers (his sons) in the passed 8 years, he's very sad.

Again thank you for commenting, I'm looking forward to hearing from you!