Sometimes there is so much going on, I avoid a blog entry because I don't know what to talk about first.
First off, ALSA of Greater NY was wonderful enough to give us Walk to D'Feet fundraisers tickets to the Brooklyn Cyclones game against the Staten Island Yankees last Friday night. I was really excited about this for three reasons: 1) I love baseball games, and this will probably be the only one I will attend all summer. 2) The Brooklyn Cyclones, which is a minor league team, is the "Farm team" for the New York Mets. 3) most importantly, The MCU Park, where the Cyclones play, is in Coney Island an area I haven't visited in many years, and a place that brings me back in time. Both my mother and father grew up and met there. As a child, we used to go there to visit my paternal grandparents and have numerous outings on Coney Island beach with extended family -- aunts, uncles, and cousins, as well as grandparents. Coney Island is legendary, and the Cyclone, for which the team is named, is one of the most famous in the world.
As a child, we would go up on the roof of the Projects where I grew up, and watch the fireworks in the summer from Coney Island. And, ironically, our view from our kitchen window in the Projects was the best I have ever had from anywhere I have ever lived. We were able to see the iconic Parachute Jump and Cyclone Roller Coaster all the time. And, as an added bonus, on a clear day, we were able to see beyond that, to the Manhattan Skyline. It's ironic, because it's the poorest place I have ever lived, but as I am starting to write stories about my childhood, I am quickly realizing that the place everybody always worked so hard to get out of, was really full of rich and happy memories for me.
I had my quarterly appointments at the MDA/ALS clinic and at my Primary Care Physician. My blood pressure was still too high, so my PCP increased one of my medications and added still another. I started taking the new medication and then looked it up on the internet the next day and found that it is in the category called "calcium channel blockers". I have gone that route before and a calcium blocker in the past that I tried had a terrible side-effect-- edema [swelling], and so this new drug had the same effect. I quickly weaned myself off that monster. My foot once again had become a shapeless blob. Lesson in all this: doctors are not superhuman beings, and they have very short memories. There was my doctor prescribing an edema-inducing drug once again for me. Lesson number 2: read up on every medication your doctor gives you. Either read the accompanying paper, which may or may not come with the bottle of pills, or if it's not there, ask the pharmacist for it. Then, go on the internet. Remember that the paper that comes with the medicine is coming from the pharmaceutical company. Although the drug company has to tell you the contraindications and side effects, and what to avoid when taking the drugs, and drug interactions, etc, it may not give the whole picture. Read what other users have to say about their experiences with the drug. Also, try to use the same pharmacy for all your drugs, so they can see what drugs you are taking together. The doctor is often motivated to prescribe a drug by which pharmaceutical rep gives the doctor more attention. It could be as mundane as which drug rep caters the best lunch for the office. I'm not kidding about this. I was a hotel and airline rep once for many years. I know that my relationships with my travel agencies drove sales. Pharmaceutical reps work the same way. Read and question. You have that right as a patient. If your doctor thinks he is a deity, you need a new doctor.
So finally I asked my doctor why I am eating right [which lowered my cholesterol] and staying out of stress as much as possible, so why can't I control this blood pressure. Isn't it time to check out my arteries and valves? She agreed and referred me to a cardiologist [whom I researched of course and was comforted to find he is associated with North Shore/Long Island Jewish Hospital in Manhasset and New Hyde Park -- the main hospitals, and very good for cardiology]. I had a battery of tests and the good news is that I have a strong heart and no blockage. Also my HDL cholesterol [the good, protective one] is very high. So I'm happy all those sardines, tuna, salmon, herring, and other fish I am eating, not to mention the Omega-3 fish oil and flaxseed I am also taking in, are doing some good. The cardiologist was very pleased to hear about all the vegetables and fiber I am eating, and that I am not eating red meat or saturated fat. So again I asked why my blood pressure is so high - heredity and aging [thanks]. Unfortunately, we whose ancestors come from Asia and the Middle East are prone to high blood pressure, and aging and not being able to move around like I once did, make it hard to keep the weight down. But I refuse to give up.
Add to that the conundrum that it is not recommended for ALS patients to lose weight. Weight loss for an ALS patient means loss of muscle, which is not a good thing. Moreover, there is the thought that weight loss usually means disease progression, and many neurologists feel that deliberate weight loss can also speed up progression, and therefore death. Nevertheless I am making it my business to do sit-to-stand exercises [but not to exhaustion] and to keep eating the way I am, and my goal is to be able to cut down, or ideally cut out, my blood pressure medications.
As to my ALS clinic visit, a new neurology fellow convinced me that increased use of the bi-pap [which is non-invasive ventilation or NIV] during the day can extend the life of my diaphragm, and thus my own life. So I started an extra two hours in the morning and an extra hour or two in the evening. If I ever get my new wheelchair, which the wheelchair company is ordering again, this time with pictures of how I am sitting in the old one, the new wheelchair will have a tray for my portable vent. So I will be able to have the vent with the battery when I go out. I have been fighting this for a long time because I don't relish the idea of going out in public hooked to a vent. But my involvement with disability advocacy has introduced me to a couple of dynamic polio survivors who joyfully go out in public with their portable vents. They are happy to be alive, not concerned with whether they are "freaking" anyone out. I hate that my disability makes a lot of people uneasy, and that my loss of speech gives the impression that I am mentally defective and somehow not able to understand what others are saying, but I have to live with peoples' ignorance. Disabled people have come out of the shadows since the American With Disabilities Act in the last two decades, but not far enough. As Attorney T K Small [a person with a disability himself, specializing in disabled rights cases] says, in a recent column in "Able", a magazine for PWD's, we as disabled people need to avail ourselves of the rights and accessibility that advocates fought for, for decades. We need to leave our houses, go out, use public transportation, and visit accessible venues. Only by being in public can able-bodied people see us, get to know us, and see that we can function well. And, this will alleviate the fear of becoming disabled themselves, if they see us as positive role models. Eventually we will hear less silly comments like "I give you credit" [for what? living?], "I could never do what you're doing [you would if you had to. what would you do instead? lie in bed?], or my pet peeve -- talking to people with you, about you, in the third person ....eg. "How is she ?" [duh, why not ask ME? I know how I am].
Peace to all!!
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Thursday, August 11, 2011
So Many Issues; So Little Time
Posted by Fern Ellen Cohen at 5:50 PM 3 comments:
Labels: ADA, ALS, ALSA, baseball, bipap, coneyisland, cyclones, disabilities, disability, disabled, handicap, Lou_Gehrig's_Disease, Lougehrigsdisease, MND, motorneurondisease, NIV, noninvasiveventilation
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