tag:blogger.com,1999:blog-3369780400856628262024-02-07T20:48:53.406-07:00Adventures In AMNAMN stands for Adrenomyeloneuropathy; it is the adult form of Adrenoleukodystrophy (ALD). Symptoms include gradual weakness and stiffness of the legs, difficulty/change in walking pattern, loss of the ability to coordinate muscle movement (ataxia), excessive muscle tone (spasm), neuropathy, fatigue, nausea, and bladder and bowel dysfunction. My feet are numb, I can't walk straight, and I can have a lot of stiffness and pain. It's rare for women to have adrenal gland problems.MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-336978040085662826.post-36708546619876441262020-08-16T18:14:00.002-06:002020-08-16T18:14:41.187-06:00To Blog or not<p>Let me be frank for a moment. I hate writing. Hate it, detest it even. It's painful, coming up with the right word for the right context is hard. The thesaurus is my best writing amigo, opened so much that, if it were an actual edition, the spine would be bent in dozens of places, falling apart at the non-virtual seams. I have times I'm more verbose and coherent but I don't always think to write, and then about what? Life is a many-faceted gem and I'm not always inspired. So to write about this dilemma of mine is but an agent to put off writing about something else that might be more deserving of the keystrokes. Ha! I did it again, pass off this writing assignment like it was sophomore biology. I also hated biology, ironically enough, given my knowledge about this stupid disease. That was more my adolescent brain than intellectual ability. But to the task at hand, I pull the cloak of defeat across my shoulders and take a bow, backing into the liquid darkness of night, and breathe a sigh of relief. </p>MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-61343580719149014332018-03-13T19:48:00.000-06:002018-03-13T20:29:11.207-06:00This is ALD<div dir="ltr" id="docs-internal-guid-5e9d86c8-221a-e309-0a8a-93bc08ff6209" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="color: #134f5c; font-family: Times, Times New Roman, serif; font-size: 11pt; white-space: pre-wrap;">I wrote this as a piece for a Facebook friend, Jesse Capello Torrey, who asked for ALD stories to feature on her blog, "Smiles and Duct Tape."</span></div>
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<span style="color: #134f5c; font-family: Times, Times New Roman, serif; font-size: 11pt; white-space: pre-wrap;">I'm 47 years old and an ABCD1 obligate, symptomatic, carrier. Out of my three sons, only my middle son, Andy, has inherited the gene. My sister is Jamie and she's a carrier. She passed the gene to both of her kids, her daughter Candice, and her son, Bradley, who passed away last July at the age of 21. Candice gave birth, with a little medical assistance, to a beautiful girl, Aurora “Rory,” on July 1, 2017, and who is not a carrier. I think it's a wonderful and beautiful story!</span></div>
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<span style="color: #134f5c; font-family: Times, Times New Roman, serif; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">My mom is Paula, she's a 72 year old symptomatic carrier. She is Jamie's biological mom also. (Jamie was given up for adoption at birth by our mom. She was reunited with Mom and met me on November 3, 1999. That's when she learned of the family history of ALD.)</span></div>
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<span style="color: #134f5c; font-family: Times, Times New Roman, serif; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Mom and I suspect that the ABCD1 gene originated with my great-grandmother, Ethel. </span></div>
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<span style="color: #134f5c; font-family: Times, Times New Roman, serif; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Ethel was born in July 1895 in Kingman County, Kansas, the only child of Harry and Pearl. I'm not certain if she was brought up Mennonite, but that is the community in which she and her husband Pete, who was raised Mennonite, raised their family, on a farm close to Pretty Prairie, Kansas.</span></div>
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<span style="color: #134f5c; font-family: Times, Times New Roman, serif; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Ethel gave birth to 12 children, 7 of whom survived to adulthood. Their first, Raymond Bell, “Buddy,” was born on June 25, 1916. He passed away on July 31, 1922 after “a short illness,” and/or “summer complaint.” This raises all sorts of red flags for me, looking back at family history, not the least of which is the age, 6 years old, at which he passed. Ethel and Pete had four babies that did not live past a year old; Lawrence lived two months, Shirley lived 10 months, Norma lived a day, and Deanna died shortly after birth.</span></div>
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<span style="color: #134f5c; font-family: Times, Times New Roman, serif; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">My mom does not remember any of her cousins presenting any ALD symptoms, but my grandmother's siblings spread far and wide across the United States, and some family members Mom has only met a handful of times. So that leads us to believe that the only unfortunate bearers of this stupid disease were Buddy and my grandmother, Leah.</span></div>
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<span style="color: #134f5c; font-family: Times, Times New Roman, serif; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Leah was born on April 17, 1925 in the farmhouse (as were all of the babies, the Mennonite community likely had a midwife or two to assist with the births.) She tired of the farm life and longed to live somewhere else. I don't know the circumstances that led her to be swept off her feet by John, but she was wed to him, and then had my mom on May 21, 1945. Within two years after Mom was born, my grandmother grew dissatisfied with her marriage and got a divorce from John.</span></div>
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<span style="color: #134f5c; font-family: Times, Times New Roman, serif; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">She then met a veteran from WWII, Harris in/near Hutchinson, Kansas. He accepted Mom as his own. Harris and Leah went on to have 4 boys: Bill in 1950, Stuart in 1955, Mathew in 1957, and Scott in 1961. Stu died from “Schilder's Disease” when he was 6. Bill was for years misdiagnosed as having Multiple Sclerosis. When a new neurologist connected his symptoms with Stu's diagnosis, he was confirmed to have AMN. He was wheelchair bound by the end of his 30’s. He committed suicide in 1997 at the age of 46. I personally don't think that Matt had the ABCD1 gene. However, he contracted HIV in 1987 around age 30. He died from AIDS in 1993 at the age of 35. Scott had mobility issues starting in his late 20’s. He died from complications from AMN in 2001 at the age of 39.</span></div>
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<span style="color: #134f5c; font-family: Times, Times New Roman, serif; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I have three sons, Patrick, 19, Andy, 15, and Alexander, 2. Of my boys, only Andy has inherited the ABCD1 gene. We found this out when Andy was 5 months and Patrick was 4 years old. This was after much inner conflict and distress on my part. I'm glad I did, however, because it gave me time to research all possible avenues of medical therapy.</span></div>
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<span style="color: #134f5c; font-family: Times, Times New Roman, serif; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">My husband-at-the-time and I decided to get Andy into the Lorenzo's Oil Study at Kennedy Krieger Institute. We had to wait until he was 18 months old before we could get him in. We went to Baltimore in July 2004 for the first time. What a crash course in how to cook and how to negotiate through the grocery store! Andy stayed with the study until 2012, 8 years in all. Kennedy Krieger's funding kept getting cut, first the MRIs got cut and I had to arrange for them in town, then the neuropsych testing got cut and it wasn't something I could get done on my own, so we made the decision to stop being in the study.</span></div>
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<span style="color: #134f5c; font-family: Times, Times New Roman, serif; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Life outside of the study has been interesting. I've been trying to teach Andy how to negotiate what he eats on a daily basis, to get him to choose lower fat options when available. He’s 15, so only so much of what I say gets heard. He gets yearly MRIs, and continues to have clear ones at that. I like to think that the L’Oil has something to do with that, but I can't be entirely certain ever. It's as if we are eternally fated to be Damocles, with the sword of ALD hanging by a mere horsehair above us, never certain when, or if, the hair will break and life as we knew it would end and our new life with ALD begins.</span></div>
MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-29334403465042541352015-06-12T23:24:00.001-06:002015-06-12T23:24:05.381-06:00Orthotics!I got them!! <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSVouRt34rVgSC9Eus4ZD07r-el2QclwZSA-aiKvRfpBQ7JKJfwwIyvN_uMEXPz_AT7925shPW72ZvpQZ-VoEZPdBKcUULQVNIdeuBZ8tZk9LXg2ZiSNCC_rkqJcdR_4VxVkqtcc-CXYk/s1600/WP_20150209_004+%25281%2529.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSVouRt34rVgSC9Eus4ZD07r-el2QclwZSA-aiKvRfpBQ7JKJfwwIyvN_uMEXPz_AT7925shPW72ZvpQZ-VoEZPdBKcUULQVNIdeuBZ8tZk9LXg2ZiSNCC_rkqJcdR_4VxVkqtcc-CXYk/s320/WP_20150209_004+%25281%2529.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-8fzHQEYJdL2IT2v5fEHKgy6-FmiT6zH8xDJPlIi7gEpfy0WDbCiSASNJ1u_BvUI-vYzUvz-rRQOwsat1kgG1h3j-Y4cpCT4cs-mswNb5IG_f78HNTN3SgIYJgho0rTt6vuHufEwsHzI/s1600/WP_20150209_002+%25281%2529.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-8fzHQEYJdL2IT2v5fEHKgy6-FmiT6zH8xDJPlIi7gEpfy0WDbCiSASNJ1u_BvUI-vYzUvz-rRQOwsat1kgG1h3j-Y4cpCT4cs-mswNb5IG_f78HNTN3SgIYJgho0rTt6vuHufEwsHzI/s320/WP_20150209_002+%25281%2529.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghdJgq1shcnnKOPxaTEdeUumF6YLsfo7825SeynlZsY3_E1AvZrbXi71BwVe0IqGlegfL3x4RdFjeDD8rRn6iWkZuVrlJ_nmdsOBt74HfJCWdBAGIh8e_QU_PrEUNkbh7W51NjyO7K_PA/s1600/WP_20150209_001+%25281%2529.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghdJgq1shcnnKOPxaTEdeUumF6YLsfo7825SeynlZsY3_E1AvZrbXi71BwVe0IqGlegfL3x4RdFjeDD8rRn6iWkZuVrlJ_nmdsOBt74HfJCWdBAGIh8e_QU_PrEUNkbh7W51NjyO7K_PA/s320/WP_20150209_001+%25281%2529.jpg" /></a><br />
I got them in January and have been trying to get used to them. It's been a challenge. But I can walk!MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-39542125370460125402015-01-31T14:53:00.001-07:002015-01-31T14:53:04.781-07:00My resolve has slipped...I know I've written more about my migraines than my AMN, but I am used to my horrible affliction, and the migraines come and go. The stupid headaches are my Achilles heel, the great flattener of my life. I've had 2 puking migraines this week and for the 2 days after, I've been so sore and miserable. It seems like it's taking my body longer and longer after each headache to recover, and having 2 nasty ones in a row has been hell.<br />
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So, as the title of the post suggests, I've unfortunately let myself think that I wish I was normal and healthy. I get told frequently that I have a great attitude about life in the face of my health problems, and I almost always do. I have my weaknesses, and this week I've gone over that tipping point and gone to the dark side. What if I didn't have AMN, depression, or migraines? What if I could run and jump and skip and ride a bike? What if I didn't have chronic pain and get tired easily? What is life without migraine like? I've never known what a normal life is like. I don't say that for pity, it's just a fact of my life. I don't know why God has chosen me to carry certain burdens; it's not mine to wonder why. Tis mine yet to do or die, I guess. I don't have a death wish, so on and on I go, stiff, sore, and sometimes grouchy. So please understand, I'm only human.<br />
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My body image has drastically changed in the past few years also. I'm no longer a size 2, I no longer have an hourglass figure. Because of the pump, my measurements are 35", 35", 35". I don't have to unbutton my jeans to pull them off; in fact, I have to pull them up when I stand up. I gravitate towards clothes that have a distinct waistline, then I have to remember that I <i>don't</i> have a distinct waistline myself. Ohhh... It used to be like a punch in the gut, but now it just makes me sigh...<br />
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My Bayard is truly a blessing to me. He accepts me as I am, health problems, sons, and all. I am lucky. I am loved.MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-25945430473964963872015-01-06T16:27:00.003-07:002015-01-06T16:27:28.509-07:00Happy new year! (And happy news!)Yes, I've been neglecting my baby blog the latter part of 2014, but I've been living quite the interesting life, in my opinion, as of late... On January 3, 2015, I married my best friend, Bayard Bray! <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1BhhzWy12wINNuC6qzF0Z8UadDmofU_s-ymhI02fZ346ImSK1r6X3WZwm-vaAV-bYK2mCl8e52Kzx9k6HeXNHKhfaSrCR9Z2NkEVsDWMPGS4r0lfltBOgDYCKJHOrt_1rueP5XhBk5nA/s1600/WP_20141225_009.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1BhhzWy12wINNuC6qzF0Z8UadDmofU_s-ymhI02fZ346ImSK1r6X3WZwm-vaAV-bYK2mCl8e52Kzx9k6HeXNHKhfaSrCR9Z2NkEVsDWMPGS4r0lfltBOgDYCKJHOrt_1rueP5XhBk5nA/s320/WP_20141225_009.jpg" /></a></div><br />
Physically, however, I reached my Medicare limit for physical therapy in October, so I was exercising with the physiotherapist, which I really didn't find to my liking. I liked working with my physical therapist, Erin. Then Bayard and I started seeing each other and fell in love rather quickly, so my time got preoccupied and I never got around to rescheduling my appointments. I hope I can go back and see Erin again. Bayard's a trained massage therapist, so he works on my neck when I need it, but it's nice to get out of the house(!)...<br />
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My darling sons are each having their own issues, not necessarily related to Bayard's being around. As a mom, I worry about them anyway, but guiding them through adolescence has seemed daunting, until now, having been a single mom. Bayard doesn't have kids of his own, so it's mainly the four of us, plus the 2 kitties. Ooh blah dee, ooh blah da, la-la-la-la-life goes on.MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-54023715702785446932014-09-01T14:12:00.001-06:002015-01-06T16:28:02.609-07:00ANDY GOT APPROVED FOR A MAKE-A-WISH!!!!!<br />
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He wants to go to Legoland in California, the beach, and Sea World. So far, so great!<br />
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Okay, found some more information about ALD on the web:<br />
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http://www.ninds.nih.gov/disorders/adrenoleukodystrophy/adrenoleukodystrophy.htm<br />
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MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-14408965348603975732014-07-01T10:38:00.001-06:002015-01-06T16:28:18.956-07:00I have realized this sobering fact lately: that my uncle Bill committed suicide when he was 46, two years older than I am now.MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-80248633504934913942014-05-21T22:08:00.003-06:002014-05-21T22:08:49.261-06:00Umm... Hmmm. Can't think of anything to say right now. I think I've got too much swimming around in my stream of consciousness to be able grasp at the fleeting, floating, shadow idea phantoms to be able to turn out a cohesive phrase. Or two, even three. Oh, here's a nugget I just realized - I'm old enough to have been taught that in correspondence, one writes out the numbers one through ten. Amazing, isn't it?<br />
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Oh, today is my mom's birthday. Happy birthday Mom! I love you! 🎂 💞💟 MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-28666612553098528922014-04-27T23:33:00.001-06:002014-04-27T23:33:06.085-06:00The Power of Positive TherapyAs I was saying before, I tend to hermit myself and not get out much. Well, that kind of changed for me at the beginning of April when I started physical therapy twice a week for a month. I have to admit that I had a great big huge epiphany in March that even though I've been through hell in the not-to-distant past, I'm much more than the sum of my parts, and - newsflash - I've actually gotten through it and come out the other side... A SURVIVOR!! Wow. I guess I'm a lot stronger than I imagined! My grandmother used to tell me, when I had a problem or concern, that we're survivors, we come from a long line of people who had to work very hard to get what they needed. Her grandfather and great-grandparents came from Russia, as German Mennonites, through Ellis Island, to South Dakota, where they lived in a dug-out side of a hill for some time until they had enough money saved to go homestead in south-central Kansas. There's more to the story, however, I digress from the point of this post. Amazing how I do that again and again and again...<br />
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Sleep is important. I didn't fall asleep Friday night, I fell asleep at 4:00 Saturday morning, then woke up at 9:30. We went grocery shopping, then I was supposed to rest. Yeah, right, like that happened. I fell asleep Sunday morning at 1:00, then awoke at 10:00. So at least I got some deep sleep. Remember the post(s) on the effect of weather on my migraines? (Reference... well, previous posts. The subject has not been suppressed.) So, to that which I was alluding, it's been windy, I've had a killer headache all day, but I've not had to take my Maxalt (thank you Excedrin!), and my balance has been horrible! I feel like a pool ball. Do I have to choose a number? How about 12? 23? 44? Oh, hey, that last one's my age! Okay, I'll take the number 1. It's the first in the series, get it?<br />
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Crud. Got off topic again. Let's start over. I have PT tomorrow. And Wednesday. Thursday I return to the pain doctor. And Tuesday morning I have Andy's IEP meeting. (The young lady who drives the boys to school for me got her drivers license suspended for not having insurance. Ooooh my.) At least physical therapy helps. I start out on the cycle, going as long as I can, usually 5:00 minutes. Then I do soft squats, holding straps and using my legs to touch a chair and stand back up, using the straps only for balance. Last week she (Erin) had me lifting weights with each leg. We finished with her working on my knots to get them unstuck and loose. She even commented on how much better I'm walking! Straight up and down, not as curved as I used to be, but still have a long way to go. Onwards and upwards!<br />
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I want to go off-topic once again, this time about my beloved Uncle Matt, who passed away 21 years ago on April 22nd of complications from AIDS. The world lost a wonderful, beautiful human being. I miss him very much.<br />
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Anyway, I'm supposed to be trying to go to sleep. All's well that ends well. Or that sucks, whichever the case may be. I have PT in the morning. And it's supposed to be windy through Thursday. 💨 Yay!! Long live sarcasm! Ginger Whiskers is snoring above my right shoulder. Gotta go! Bye!<br />
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- MMargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-20200123741061777662014-04-02T18:54:00.001-06:002014-04-02T18:54:41.071-06:00But you don't look sick! (aka, gotta vent!)It's all in my head. Well, yes, it is. I've never had a migraine that wasn't, though abdominal migraine exists. My AMN might have inflicted lesions on my brain, it has particularly affected my spinal cord, which is, I'm pretty sure, is attached to my brain. Which sits inside my head. Or so I've been told.<br />
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Heard about a cure/treatment? Fine. Keep it to yourself. You're really not helping, unless you drive me to and from medical and physical therapy appointments, come over and help with chores, or simply call to see how I'm doing because I hermit myself and I don't reach out to people, please just shut the fuck up.<br />
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If I'd only... What? Try this, do that? Take a pill? I take 11 pills daily for all of my various types of medical conditions. Stop taking so many pills? Okay, let's see, stop taking Synthroid for my hypothyroidism? It's actually Hashimoto Syndrome and it's an autoimmune disease. Or maybe one of my antidepressants. Which one, the mood elevator or the mood stabilizer? Or here's a hot one - how about my pain meds? Have you ever written to the point of writers cramp, or run and had pain in your side or shin splints? Try having that, every minute of every day of the rest of your life.<br />
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At least you won't die from it, right? Wrong. Migraneurs have a 40% greater chance of having a stroke than the general population. My grandmother had AMN symptoms, albeit mild. She died from having Alzheimer's Disease. I've heard, "People don't die of Alzheimer's." Okay. Alzheimer's Disease makes Swiss cheese of the brain. So how do they die?<br />
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There is no upside to AMN or migraine or depression or hypothyroidism or osteopenia. My Uncle Bill was cursed with AMN. At first it was misdiagnosed as MS, but that was common in the 80's. Yet his spinal fluid showed no signs of that autoimmune disease. It wasn't until a random doctor put together his symptoms with his younger brother, Stuart's ALD, that the puzzle pieces came into union. Wow, ALD/AMN! We had a name for this monster! Well, then Bill decided one sunny morning in June 1997 to go out onto his back deck and blow his brains to smithereens. Is that up? I've decided that it's out, all over. I can't hear the expression about blowing one's mind without thinking about him, at least for the narrowest of seconds. If I ever get my book written, the title I've come up with is "Live Through This." Get it?<br />
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I admit to being eerily aware of my own fatality. I don't dwell on it, unless it's the quiet time of night when most sane, healthy people without insomnia are asleep. I get to the point where I think about my boys going on without me and I stop. It's making me panic just discussing it.<br />
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Okay. The soapbox is gone now. It's just me, simply complex, complexly simple. I've done a lot, said a lot, sowed a lot of wild oats. Are my medical conditions some sort of punishment for some past indiscretion? I tend to think of myself as a good person, but human nonetheless. I blame my genes. And not the 501s! (Like I could ever fit into another pair! Ha!) Naw, it's the ACGT code, carried by my foremothers (ALD is X-linked remember), past countless years over countless borders wide and small. I'm so not perfect, but who is? MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-87998639414849486332014-03-17T14:43:00.002-06:002014-03-21T07:13:45.843-06:00Ramble on...Dictionary.com defines "scare" as:<br />
scare [ skair ]<br />
<br />
verb (used with object) [scared, scar·ing.]<br />
1. to fill, especially suddenly, with fear or terror; frighten; alarm.<br />
verb (used without object) [scared, scar·ing.]<br />
1. to become frightened: That horse scares easily.<br />
noun<br />
1. a sudden fright or alarm, especially with little or no reason ⬅(not always so!)<br />
<br />
I must admit to really liking Urban Dictionary's 2nd definition of "fear," which are acronyms:<br />
<br />
fuck <br />
everything <br />
and <br />
run <br />
<br />
Another acronym of fear is: <br />
false <br />
evidence <br />
appearing <br />
real<br />
<br />
Why do I bring this up? Because, along with other unpleasant emotions I've been feeling lately, I've realized that part of the problem is that I'm afraid about my future. The downside of having a rare disease - and each clinical case is different - is that there's no roadmap to follow, no definitive guide to show me how my AMN is going to progress. My balance is worse lately, like over the past month. I've been walking into things, feeling like a billiard ball, bouncing from wall to wall to table, counter, etc. I always touch something along my way, as I find my cane bulky in our small apartment. <br />
<br />
I've had a couple of medication changes over the past two months: from Tramadol to Oxycontin, and Methadone to Morphine. The Morphine we think is what's making my balance so bad. So I've gotten a referral to physical therapy, to see if working on my legs and my gait will help with my balance. Ugh.<br />
<br />
There's nothing like watching my body slowly die. Or face a deep well of loneliness, inky black and it physically hurts my chest. Who wants to be with someone who can hardly walk, who can't go hiking, ride a bicycle, dance? I can't even drink alcohol because of the morphine. I get in a rut when I'm tired and feeling achy, where I think about what I used to do, the jobs I've had where I got to do things 99.9% of the population will never be able to do - like work with professional athletes (never again!!), skiers, skaters, and soccer players. And I've been all over the old Mile High Stadium, standing in the middle of the visitors locker room, once accidentally seeing a little too much of our goalie, but I wasn't spotted, so I backed out quietly and took the elevator to the press box level to get my radio. Oops! Wrong day to forget new procedures!<br />
<br />
Oh, I ramble on. Probably a good thing, lets me forget about how I'm feeling. I went through hell in the sports world. Add a chaotic personal year and I had my fill. 1996 was the first year of the Rapids Major League Soccer Team. I started with them in February, after having left the sports agency because I didn't get along with one of the agents. (Napoleonic Complex.) I was made to stay late, planning and perfecting our marketing plan, pre-game parties, and for no other reason than the GM was the boss and what he said we did, or face the firing squad. My boyfriend at the time was extremely jealous that I was in the sports world and he wasn't, and he couldn't stand being by himself. So in December, I left for good. From that point on, chaos reigned. 💧💦<br />
<br />
In February '97, I had a mole removed that turned out "abnormal." So I had to go back in and get a chunk removed from my upper arm, that was in April. Oh, I need to stop and explain that the first GM was fired for incompetency, and my boss, the Director of Marketing, left to go work for his dad, a sports agent. Okay, so in May, I was called for jury duty and immediately picked for a trial. Civil trial, a man sued the Rocky Mtn News, and we found in his favor. Anyway, in the middle of the trial, my adopted dad Caldwell died. His funeral was on a Saturday, so I didn't miss any trial time. Then a month after that, my Uncle Bill, who had AMN, committed suicide. Two weeks after that, my best friend got married. A month after that, my Uncle Scott was diagnosed with AMN himself. He would later die in February 2001, at the age of 39. Then in October, the Rapids won the Western Conference Championship. Mr. Anschutz announced that the entire front office would go to Washington DC to watch the game. Well, the night before we were to leave, Denver got 18" of snow and continued through game day. I wasn't going anywhere. And I got SO pissed! After we all got back to work, I walked into my boss' office and quit. I'd had enough. No mas para mi. We talked for two hours and I decided to go back to school. That's a story for another day.<br />
<br />
I'm tired and hungry, so I'm going to go now. Bye-bye for now!MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-40002357451099704162014-01-31T18:31:00.001-07:002014-01-31T18:31:51.029-07:00Watch this video!I've tried my damned-est to insert a link to the video below now 3 times. I may have explained before, but I have a Windows 8 phone, and it really doesn't like Google, who hosts this website. So I have to do things "the hard way."<br />
<br />
Anyway, the video in reference is on YouTube, titled, "What is ALD? Adrenoleukodystrophy explained." and it is by YourekaScience.<br />
<br />
The explanation paragraph states:<br />
<br />
"What is ALD?<br />
Adrenoleukodystrophy is a devastating genetic disease that affects the myelin around neurons in the brain and spinal cord.<br />
Learn the biology underlying the disease and what potential treatments may come from ALD research.<br />
<br />
This video was produced in collaboration with ALD Connect (www dot aldconnect dot org)"<br />
<br />
This is the most comprehensive and succinct explanation I've found in the 17 years I've had a name for the family curse. I still can't tell you with certainty what a peroxisome is and what it does within a cell, but if you pay more attention than I did, you will. I had to repeat sophomore biology as a senior in high school, so everything I know about this branch of the Leukodystrophy tree, I've had to struggle to learn. Even my status as a symptomatic heterozygote was cloudy at first. <br />
<br />
Watching myself slide into the inky depths of AMN has been heartbreaking: being on Social Security Disability and taking the financial hit, the pain and stiffness, the alphabet soup of pharmaceuticals and diagnoses, and the ensuing depression have been so hard! What have kept me going are my beautiful boys, Patrick and Andy, and my mom and dad. Thanks to their love and support, I've been able to manage day-to-day for many days past and more to come. I gotta stop. I gotta go. I can't tell ya where I'm going. I don't even know.<br />
<br />
- MMargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-69990940217690604422014-01-09T17:40:00.000-07:002014-01-09T19:22:08.535-07:00Don't know why there's no sun up in the sky...Migraine weather<br />
Since the wind and me ain't agreein',<br />
Keeps blowin' all the time...<br />
<br />
(Props to Songwriters Harold Arlen & Ted Koehler)<br />
<br />
Okay, now. I've been wanting to talk about how the weather affects my health. People who know me well, know that I get migraines as well as having AMN. When there's a low pressure system, especially with wind, I tumble, willy nilly, head over heels, until I land smack dab in the middle of First and Main in Migraine City. I tried putting that into the location of my status box on Facebook, but my phone and FB are not seeing eye to eye, or, rather, bit to bit. That's okay, I know where I am, however, I usually wish I could take cover under a rock. Or perhaps I could lend myself for employ to the airport as a runway light, as it feels like I have lasers shooting through my eyes from the back of my head. Alas, the couch becomes my resting place, the blanket my rock. If the headache is intense, I have at my disposal oxygen, and it brings sweet relief, helping me to relax until the Maxalt kicks in.<br />
<br />
Part and parcel of windy days is the inability of my equilibrium to right itself quickly, like how it does in "normal" people. Now, please, don't think me of twisted thought, but there's nothing wrong with "normal" people. I just happen not to be one. I don't think I ever was. But that's beside the point. I lose my balance and am not in any way able to either walk a straight line or stop suddenly. I've fallen lots and lots of times. I try to do "soft" falls, like against a wall or a piece of furniture, so that I don't do any "hard" falls, which are all the way down forwards or back. I was told not to fall by the nurse at my pain doctor's office, because I can kink, twist, or break the line from my pump going to the epidural. I can also dislodge the epidural. Oh, and I have osteopenia, what you get before a diagnosis of osteoporosis. So if I fall and break a bone, it could get yucky. So I literally walk around my apartment touching things all way all day. I don't like to use my cane inside; I find it bulky. I have in mind a walker-type contraption that secures around the waist and has 8 strong, thin rods that radiate out slightly, and end in casters. That way, as I walk, I'm being straightened automagicly.<br />
<br />
The changes in air pressure have their way with my muscles also, sending them into spasm, tightening and compacting them into little more than rocks. Red rocks. Hey, my favorite concert at Red Rocks was Big Head Todd and the Monsters. I just don't like whom I was with. Story for another day. My pump puts Baclofen directly into my spinal column, so that I don't have to depend on oral meds solely. I see the Great and Powerful Dr Ribnik at Pain Consultants on Monday to discuss adding a pain med to my pump too. We'll just have to see what happens.<br />
<br />
I'm fatigued, so I'm going to go rest. Namaste, friends!MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-86681280364560672142013-10-14T08:36:00.001-06:002013-10-14T08:36:06.508-06:00Even with the alarms I have set on my phone, I still forget to take my Tizanidine (muscle relaxant) and Tramadol (pain killer) until I start feeling achy. At the pain doc this past week, he increased my pump. I've noticed it, but mostly because I'm drowsy. It's nice to get some rest again.<br />
<br />
My darling boys have started school again. Pat's a freshman in high school. Oh my goodness! It doesn't seem like he should be that big. He's been taller than me for quite some time now.<br />
<br />
My life seems to go in waves, and I just grab my raft and hang on! MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-5354564196361050862013-07-10T14:52:00.000-06:002013-07-10T14:52:58.082-06:00Ours is not to wonder why...I was raised to not complain. So sometimes I have a hard time explaining what's going on in my head, unless I'm in with my therapist, or can trust to whom I'm telling. I'm 43, look lots younger, but I don't look like I have a disability, except for the cane I use. I used to get mad (and sometimes still do) at the people who don't move out of the (my) way when I'm walking in a highly-populated place. Like WalMart. So I decided to not change my course. And have almost walked into many people. It's easier for them to move than it is for me. I've gotten the reaction that I must be faking walking with a cane. I'm too young and I don't look sick. Well, guess what? I'm not!<br />
<br />
It's been so hard at times trying to come to terms with having AMN, and all that I've lost the past 10 years. I feel like I used to be so pretty, so vivacious, I feel like I'm neither anymore. Granted, the boys and I were with an alcoholic who I let tear me down to nothing. I understand his psychological makeup, and he's dead now. I wonder how much my disease has progressed because of what I went through with him. The world may never know...<br />
<br />
I don't mean to sit here and complain. I've just had a hard time lately feeling at all good about myself. I look back over the past few years and think about all I've lost. My mobility, my car, my drivers license, my looks, my vitality, my strength, my faith, my energy, my health, my possessions, my art... So I sit back and look at what I still have. My boys, my sense of humor that drives Patrick up the wall, his and my unspoken connection, my Andy Rew, my mom, our small living space, each other and the love we all have.<br />
<br />
Okay, so maybe it's not a perfect life, but it's the one I have. And I'm dealing with the rest as best I can. 💟MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-88554436416988291812013-06-28T00:51:00.002-06:002013-06-28T00:51:39.585-06:00It's midnight, and I've been working on this It's hot in the living room where Andy and I sleep on the pull-out bed. It's hot in Pat's room, too, so he's taking a shower to cool down. Andy and I have to get up early because his therapist is picking him up at 10:00, which is a bit early for us during summer vacation. Andy's the busy one amongst us: Tuesdays he has Speech, Wednesdays he has Group, Thursdays he has Speech, and Fridays he has Therapy.<br />
<br />
I've definitely turned myself into a hermit. I go out once a week for groceries, every other week for my own therapy, once a month to go see my pain doctor (PA), every 3 months to see my neurologist. Isn't that fun?? 😊<br />
<br />
I don't think I've ever mentioned that I'm on nighttime oxygen, too. In addition to giving me dry mouth (and a slew of dental problems because of the dryness), but some of the meds - don't know which ones - suppress my deep breathing when I sleep, giving me a horrible headache when I wake up. But there are still times I wake up with migraines. But that's a topic for another time.<br />
<br />
I hope this finds all happy and (fairly) healthy! 🔥♨🐱😸🐾💫🌌MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-33027830089386432612013-06-02T06:16:00.001-06:002013-06-02T06:16:37.914-06:00Okay, so like I told you, I am the world's worst blogger...So... How ya been? I've been up, down, and everything in between. Scott at Pain Consultants has been monitoring my pump, adjusting and refilling as needed. Originally, the thought was that if we can get the muscles relaxed enough, then the pain would recede. That has not been the case, as no matter what, the muscles spasm and hurt. I do have my good days and my bad days, but don't we all? The weather definitely plays a role in how I feel. We've had some really, REALLY windy days lately, so between the AMN and my migraines, I've had a helluva time.<br />
<br />
I found out in February that Fucktard died January 6th of a heart attack. While I am sad that a human being lost his life, I am nonetheless relieved that I don't have to worry about running into him unexpectedly. I was over him after a year into the relationship, but had no way to escape, so I spent another 2 1\2 years suffering his verbal blows. I (we) got rescued by my step-father Jim, my step-brother Josh, and 3 police officers. I had (I don't remember if it was 10 or 15) minutes to grab my stuff and get out of there. So we grabbed as much as we could, including Miss Ginger, and left. We ended up at Mom and Jim's trailer. The boys were spared that scene, as they had spent the weekend with my ex, Gary. Apparently Mom had called Gary to give him a heads up and to have him drop the boys off at her house. So we were suddenly FREE! That was May 16 (I think), 2011. It was a very good idea to have my mom around, otherwise I would have gone back to him. I spent a lot of time studying his actions and behaviors to try to figure out what made him do the things he did. I came up with a hypothesis: that he had Narcissistic Personality Disorder. I think his mother wasn't around emotionally or physically, so he didn't get to complete the Oedipus Cycle. He grew up in an atmosphere of abuse and neglect. He learned from a young age that if he wanted something, he had to get it himself. Cut to the future, and he didn't see a woman as being autonomous, but what he could get through her. He was simply a parasite, sucking the life blood out of a woman, and when he spent all her money and crushed her spirit, left her in the dust to go find someone else. After my rage had passed, I thought of him... and laughed at him. Sitting in his tiny house, alone, an alcoholic and type 1 diabetic, no one to take him to the liquor store, no one to do anything for him anymore. I pray for him.<br />
<br />
Gotta go for today. This topic's trying to bring me down. Not good. Now I think I'll go virtual window shopping. Red Green always ends one of his segments with, "I'm pullin for ya; we're all in this together."<br />
<br />
With that, I'm ending this session. May your time until next be as sunny and happy as you can make it! 🍭 MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-50046927034222617622012-11-20T01:26:00.000-07:002012-11-20T01:26:52.383-07:00Just a noteSooo… Dr Kerber "doesn't do anything with the pumps," so her office has informed me twice now. Therefore Dr Ribnick hooked me up and increased my Baclofen output to 60mcg per day, up from 50mcg (a 20% increase!). And yes, we're talking "micro" grams here, not the usual "milli" grams. Nor Milli Vanilli, and the fact that my brain could come up with "Girl You Know It's True" by the time I finished typing their name disturbs me greatly. I must be tired, but why then cannot I sleep? Reminds me of the song "Paranoia" featuring Max Headroom. Ah, 80's, let loose my head from your grip!!!MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-1701949143083743802012-11-20T00:08:00.002-07:002013-06-27T23:58:15.632-06:00Sooo… Dr Kerber doesn't do ANYTHING with the pumps anymore. To Dr Ribnick I went for an office visit. He pulled out the "pump communicator," MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-48448692032942292762012-09-22T22:05:00.000-06:002012-09-22T22:05:27.605-06:00Baclofen pump success! Huhhhmmmph! This is only the third today I've tried to write this blog. Everything else kicks me off, making me start.. Over. <br />
Okay, I'll try to make this quick. Baclofen is a muscle relaxant. The pump was surgically implanted into my left side front, below my ribs. The hose is internal, ending as a catheter inserted directly into my spinal column, giving me a constant dose. My neurologist wants me to continue taking my same oral meds (Baclofen, Tizanadine, which is another muscle relaxant, and the painkillers Tramadol and Methadone), just to figure what my eventual dose will be. The pump will have to be refilled about every 6 weeks, depending on the established dose. It gets filled with a syringe, through the skin and a little port on the pump. They adjust the pump through the skin with an wand. Very cool! MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-77553697466586365142012-09-22T19:32:00.001-06:002013-06-27T23:58:15.645-06:00Oh me, oh my! Let's try this for the 4th time! MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-48793387079175288392012-09-22T18:48:00.001-06:002013-06-27T23:58:15.634-06:00Baclofen pump success! MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-65361504815021107562012-08-28T12:04:00.000-06:002013-06-27T23:58:15.643-06:00I'm getting a Baclofen pump! :/MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-1388332517377416532012-08-09T02:35:00.002-06:002013-06-27T23:58:15.630-06:00Let's get this party started!!!MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0tag:blogger.com,1999:blog-336978040085662826.post-53100967121139611372012-08-02T02:03:00.000-06:002013-06-27T23:58:15.638-06:00Start…MargaretBrayhttp://www.blogger.com/profile/04315867661184351132noreply@blogger.com0