Mother may I? May I kill the acronyms?
by Cathy Speck
As you may or may not have heard, May is ALS Awareness Month. I tend to think that everyday is ALS Awareness Day. Despite what some folks may or may not think, this doesn’t mean that I obsess about having ALS. But I do think about helping people with ALS everyday, and how can I make a difference? Of course, I do have compassion for people who are struggling with other cruelty, but I’m unusually prepared to help PALS & CALS ( people with ALS & Caregivers of PALS CALS.) OMG, this is Acronym City! LOL!
For those of you who don’t know (FTOYWDK ) ha ha, I couldn’t resist, I’m one of those people with genetic ALS-SOD 1, the kind that is 2 percent of ALS cases. My family has already lost my mom, Aunt Mary, brothers Paul and Larry, and now I’m carrying the torch. I hope I never I have to pass it on.
But the good thing about this is that since I’ve gained much knowledge as a PALS and CALS, I may extend my hands and offer some guidance. This is especially true for those who were recently diagnosed, and feel so lost and scared.
I am not an ALS professional; remember that old commercial “I am not a doctor, but I play one on TV?” Well, I’m not even on TV, and I don’t claim to know 100 percet about anything.
But I do want to share with you some questions a PALS emailed to me after our last Support Group in Sacramento.(She gave me permission, but I’m still giving her a different name, “Mary.”)
And of course I’ll share my answers with some words and acronyms that showed up on the monitor after my fingertips were dancing on the the keyboard. Just to keep things simple, I’ll call it “HASWTSUOTMAMFWDOTTK.” The accent is on the third syllable. (If you can decipher that acronym, you could be eligible to win a collectors’ item Duval Speck CD and/or T-shirt. Just eligible, mind you.)
Here’s some of our email exchange:
Mary: “Hi, Cathy. I just came back from a two-mile walk with a friend (well….we stop halfway for a cup of coffee or something) and I’m really beat. Way too much to do today. ..”
Me : “Oh gosh, Mary, I totally understand the desire to do maintain our activities, to keep up on all the things we loved before the ALS diagnosis… and you’ve shared with our co-PALS how active, go-go-go your life used to be. But, there’s a reason why you’re feeling, exhausted, wiped out — you have ALS. This part of ALS has been the most difficult part for me — limiting my physical exertion.
We PALS must learn how to stop ‘before we get tired.’ I laughed when one of my doctors told me that. At least I can offer a few quick suggestions for energy “pick me ups”: I drink two or three cans of coconut juice per day. It is pure coconut juice (aka coconut water) No sugar, no preservatives. Usually costs $2-2.50 per can. It is a natural isotonic beverage, and helps balance electrolytes.”
Mary: “Do you have any children? My daughter, I think, is already a little apprehensive about having ALS in her immediate family, and she said if there were a test that showed whether she had a chance of getting it, she wouldn’t want to take the test…
Nobody had it in my immediate family. I come from a small family — my father and I were only children, and my mother had 1 brother who had only one child.”
Me: “I do not have any children, but if I did, my offspring would have a 50 percent chance of inheriting the genetic mutation and developing ALS if something else didn’t kill them first. Then if one of my children got ALS, his/her children would have a 50 percent chance, etc, blah blah, wah.
The good news is… from what I’ve learned doing research, and I’ve read and heard from you about your family, my opinion is that your daughter probably has nothing to worry about if neither your dad or mom had ALS or the genetic mutation. It’s understandable why your daughter doesn’t want to be tested; then again, if she got the ‘thumbs up,’ she could free up some space in her mind/body. My opinion is to have DNA tested if you suspect familial ALS (fALS.) Here comes the cliché: Everybody is different — we cope the way we know how.
Mary: “I liked your comment about how you use your family physician to help you through this journey. I’m making an appointment with my primary doctor and want to ask her some hard questions, like: ‘How will you help me out with this disease?’ and ‘If I tell you that I’m choking on food, will you suggest a feeding tube?’ or ‘Have you ever managed an ALS patient?’
Me: “I wish I could give you an easy answer, or direct you to any physician who knows everything about ALS. The truth is, unless you’re doing the ‘one day Forbes-Norris clinics’ in Sacramento and/or in San Fransisco, you usually need to go through or get referred by your primary for our various tests, therapies, prescriptions, DME, respiratory equipment, handicap parking decal, etc. Please keep in mind, this is my experience. I saw a few neurologists at the very beginning, but haven’t needed them since then. Yes, my primary and I are ‘sharing this journey’” and I see her about every two months, unless something bad comes up, like pneumonia. Then I see her immediately.
Adapt adapt adapt.
That’s what ‘surviving’ ALS is all about anyway — adapting to the latest changes in your abilities to function. Well, that’s not exactly what surviving ALS is all about… I’ve had ALS for over three years, and most people would agree that I must be doing something right. You might not have that kind of relationship with your doctor, but perhaps it can grow…? Most primary physicians have little if any experience treating ALS. And remember, no matter what any doctor tells you, you are in charge of your life.
Mary: “The doctors are using 9/2010 as the first diagnosis since that was when I went to the doctor because of my speech. I feel I had it since early 2010 because I was having problems modulating my speech (it was raspy and gravelly sounding). During that time many people kept asking me, especially if they were talking to me on the phone, if I had allergies, or if I had a cold.
During 2010 I had diagnoses of stroke, beginning Parkinson’s, age related (due to ‘funny light shadows’ on the MRI), and myasthenia gravis. In Sept. 2011 after a second series of EMG’s, I was diagnosed with Bulbar ALS, and it was confirmed at the Mayo Clinic in Oct. 2011.”
Me: “It’s so sad that so many people are misdiagnosed when it comes to ALS. One of my brothers was misdiagnosed for too long. He was diagnosed May 6, 2008. and died June 22, 2008, of respiratory failure in his sleep. You would think that neurologists would have been more inclined to think ALS was a viable diagnosis since our mom died of ALS (more info about ALS at www.alssac.org). Then again, Larry was a patient, gentle man, and I doubt he pushed the doctors very hard. I mean, who really wants the diagnosis of ALS?
Remember, Mary… No doctor or therapist can force you to do anything; you can choose what kind of quality of life options are best for you. For example, about five months after I was diagnosed, a neurologist was pressuring me to get a feeding tube in two weeks. Heck no! Hit the road Jack! And look at me now! So, my dear Mary, I encourage you to bring a friend with you to you doctor appointment, and bring a notepad with your questions.”
Mary: “Thanks for the tips… I’m saving your notes.”
Me “It is truly my humble pleasure to share my personal experiences and be able to help.”
(Any guesses about how to decipher the acronym of the week: HASWTSUOTMAMFWDOTTK? Reminder, the accent is on the third syllable.)
~ Come Jump with Us! ALS Skydiving Specktacular, May 20, approximately 9 a.m. to 3 p.m., Skydance at the Yolo County Airport. Skydance manager Neil said that everyone interested in skydiving should call Skydance, 753-2651, to make a reservation. The fine people at ALSSAC and all your friends should probably know the times of each pre-flight classes: 8 a.m., 9 a.m., 10:30 a.m., noon, 1:30 p.m. and 3 p.m. Or, you can just hang out and party like the rest us with our feet or other body parts on the ground, and celebrate at the outdoor “Boogie Shack” and beer garden as we watch our flying friends land on the ground safely. (More information: www.skydanceskydiving.net)
Be sure to reserve your space now at www.skydanceskydiving.net and mention Cathy Speck ALS so we can get a group discount. Spread the word!
Here is my skydiving video — good thing we filmed it because there are no words to accurately and spiritually described the feeling: