IntrinsicTina

I cannot believe the end has come so quickly. I was stuck in a wholly inadequate nursing home for damn near a year. It may as well been prison. The management was not interested in my well being as much as in the conformity of  their populace. They blithely took away any small freedoms I had in the name of safety. I went from farm fresh eggs to institutional crap. From organic juicing to the cheapest watery flavored facsimiles. The nastiest blandest toughest excuse of food I ever had the misfortune to taste and I grew up on commodities. When I was physically able to manuever my power chair, they slowed it to a crawl. Then they took it away altogether, ignorant of the medical necessity of it. They were ignorant of the PseudoBulbar Affect (PBA) or Frontotemporal Disease (FTD) I was suffering from which governed my emotions. Instead, they would treat me as a child and exert discipline upon me. Wholly inappropriate. I needed treatment and understanding. There was no real attempt to learn

I've been listening to Clash of Kings for about a week. I should be finished but I keep falling asleep and not able to find my ending place. As a result, I heard the same part over and over again. Sheesh! I miss being able to function independently. I'm cold once again alone in my private ICU room. I was warm enough 20 minutes ago when I was being readied for bed. The outside temperature must be plummeting considering the icy fingers reaching from the window wall. Sounds like a nice room, huh? I wish there was a view but I only see the building next door. Going to have to use my call button soon but I hate being a nuisance. There are people who have a shot at life in here.

Tough handful of days... Got real sick, no temperature but could not keep my airway clear. Husband spent hours with the cough assist on me since the nurses at the home are so miserably inept with it. (Not to mention any names, Fatou and Mercedes, and Lore. It may just save a life to have more than one penny anney on-site check-the-box class on the cough assist and bi-pap.)BTW, Lore did not bother attending and I know they had not bothered to train Fatou. The nurse's priorities are distributing drugs and taking blood sugar readings but there is precious little nursing going on. It's a shame really. And I don't want to bag on the nurses. It was the nursing home representative that repeatedly assured me that they could handle ALS patients. They have repeatedly shown me just how incapable of the task they are. They were more qualified to kill me through gross ignorance. Following a protracted argument with the ambulance company about where to take me and my competency to ma

My relationship with my augmentative alternative communication (aac) device is love/hate. I love that I have an alternative form of communication. I see so many people who have lost the ability to speak due to stroke or TBI (traumatic brain injury) and their communication is reduced to head nods or unintelligible sounds. They are so frustrated. And that single word doesn't begin to cover the myriad of emotions that one feels locked within their body. I hate the pace of the communication. It's molasses slow. Even the patience of a saint would be tried! Caregivers and family often forget that I need time to respond. That I'm not ignoring them. I hate that it is not more predictive. I remember how quick I could type and respond pre-illness. And this is painfully slower. Also hate how slow the processor is. For $22,000 one would think you would get a speedy little processor, predictive text, lots of storage, and MS Word, MS Outlook... I mean really!

I've been slamming on this place pretty hard but in all fairness, there are some high points. I am one of the youngest people in residence at this nursing home. As a result, I attract a bit of attention. I seldom get through the day without a compliment or two. "Hey Gorgeous! ", "Good morning Beautiful! ", "You're so pretty.", I am told. My clothing is complimented on, my taste, my spirit, even my room decor. Never in my life, have I been so scrutinized and yet, so complimented. There's one man here that has called me "a stone, cold fox" as well as a "princess" and even a"Godess". I never got that at home! And the management is wrapping up a remodel that was badly needed and it's actually tasteful. I'm pleasantly surprised. I've had a few good nurses and a few good aides.

ALS support group meeting was today and so was the Seahawks vs 49ers game. What did we do? Support group. But the game was on. I got to watch a whole 5 minutes worth because we had a new person to support. It's what we do. Give back what was so freely given us. Love and support to our fellow ALS sufferer. Our newest member is under the impression that he's got some kind of control over this disease. I can relate. I ate healthy, keeping a journal, even taking up juicing. My ALS still progressed. I went to water aerobics and still progressed. I went to physical therapy and therapy came to my home. I exercised on my own and still I progressed. I went on the Deanna Protocol for two years and still I progressed. I prayed and I've been prayed over. I've been blessed at Assumption Abbey and I've been blessed repeatedly by a Catholic priest and I'm not Catholic! Still I progress. I fight this disease with everything I've got. And still I progress. I wish him well.

I'm really sick of this place. It's so dysfunctional. There are so many disconnects. For example, today I'm getting my medication and I notice the concoction is the wrong color. I ask the question and am told the order was changed by "the doctor", meaning the facility oncall doctor who I doubt rivals my ALS doctor, the head of neurology at the University of Washington Medical Center. I've had my Deanna Protocol routine approved by this board-certified physician and taken it for over two years. There is no flamin' way anyone at this place is remotely qualified to overrule me and my ALS doctor. We know this disease. They do not. Anyway, they made the change and nobody bothered to tell me. Typical. Disconnect. The night nurse got the order and the day nurse never passed on the information. Yesterday, the dietician wanted to reduce my folate. I said she doesn't get a vote. The nurse couched my refusal in more diplomatic terms. Oh, and they're so atte

So very little happens in a nursing home that is special or uplifting. It's a false environment. It's an aggregate of diminished people offloaded by their family's who could not or would not care for them. We are in a for-profit warehouse of death. A place where it is legal to strip us of our identity, our dignity, and our rights. A place where we are vulnerable to not only sexual abuse, but also physical and emotional abuse as well. While I have not been sexually abused thus far, I have suffered many indignities. My privacy has been violated. And I have been physically and mentally abused. I have experienced shunning at the hands of staff members. I am technically continent however the staffing is so lean or inefficient that I am forced to wear disposable briefs and had to learn to use them. I had to learn to defecate in them as well when it took as long as an hour or more to get my call light answered.

I verbally attacked my room mate early this morning. I had a rare night of insomnia and spent time blogging and watching television in my room. I thought about my room mate and adjusted the volume down to what I thought was a low level. Indeed, I had no complaints neither from the aide nor the nurse on duty who visited me on 3 separate occasions during the night and into the morning. This nurse would have no problem turning my volume down if she thought I was bothering anyone. My room mate did not complain nor stir from 11:30 pm until 3:30 am when I used my call button to get my brief changed. When the aides arrived to help me with that change, my room mate piped up saying that she didn't sleep all night with my TV so loud. I know darn good and well that this is her tactic to get her own way. It's unnecessary. And it gets my back up. Therefore before I thought about it I began to argue that she had slept and offered no complaint but forming words and being understood is an ever

I had a dream last night. Actually, I dream every night and quite vividly, I might add. But last night included my sister, Dawn. That was rare. I dreamed of a glittery party which included our own President Obama. Weird on many levels. Many of her friends attended. It was an outdoor event at the White House. Then it morphed into her friend's backyard, then I was alone in her backyard in Black Diamond. (she doesn't live in Black Diamond.) then I sit down on her lawn and begin pulling up dandelions under a tree. I'm thinking while I'm pulling, reflecting on her life, particularly, about all the times she surprised me. And I'm realizing how unfair I've been to her. And how I've never told her how proud I am of her. There's a lot to be proud of. First, like me, she managed to rise above her heredity and life circumstance and get sober. Not a small feat considering our socioeconomic status (poor white trash), history of abuse, and subsequent low self esteem

It's the Thanksgiving holiday weekend. I'm alone even though I reside in a shared bedroom with a 78-year old woman. I'm alone in this skilled nursing facility housing 100+ souls. I'm reconciled to my aloneness. My heart doesn't hurt. At least not today. I hold hope in my heart that my husband will visit. He begged off taking me to church this morning citing snow yet the roads are clear. But I hold hope nonetheless. I have God. I know I do. He never leaves me and carries me every day, every minute. Especially when I'm weak and in despair.

First of all, I would like to thank my friends and extended family at Life Care Center of Federal Way for joining me and making it possible for me to participate in the Ice Bucket Challenge. Without their gracious and capable care, I can do nothing. I would like to thank the millions of people who have taken the time to participate in this event, have learned about ALS, and who have reached into their wallets to support ALS research. I would also like to thank the ALS Association, particularly the Evergreen Chapter, who have given so much to many of us afflicted with ALS. Last, I want to thank the tens of thousands of us PALS (persons with ALS) who pull up their bootstraps every day and support each other and are literally, dying for a cure. I sincerely thank all of you for your love, well wishes, and support. God bless you. The preceeding was the speech I made prior to taking the Ice Bucket Challenge this past summer. I still feel that way today. This is my first Thanksgiv

My loss of energy is a big problem all of a sudden. I am exhausted so easily. Just trying to get through a blog entry is a test of my endurance. I have many entries started then abandoned due to interuptive naps, taking medications, cough assist breaks, or those pesky meal times. I also suffer technical difficulties, such as when I write out a paragraph then "eye gaze" cancel instead of insert text.

Yesterday, November 19, 2014, was another day I would as soon forget, but I dare not. It started normal enough with fairly competent aides. I had breakfast in the diningroom and retreated to the relative privacy of my shared room to rest up for my big quarterly appointment at the ALS clinic. I made it known that my appointment was this day and confirmed my transportation pick up with the nurse. I learned that my pick up time once again inadequate should we encounter traffic or other delay. I asked that the pick up be moved up to 11:00 or 11:30. She came back and let me know that it was moved up to 11:30. My room mate also had an appointment as well but her noon pick up was noon and she was prepared accordingly. On the other hand, my pleas to hurry went unheeded. At 11:25 they finally changed my soaking brief unhurriedly, my sack lunch was delivered. Finally my brief was changed (single-handedly), then I was transferred by both aides. Incredibly, the aide most familiar with me went to

In the state of Washington it is legal to end your life if you have a terminal illness and if you are able to self administer. You tell your doctor, who refers you to a panel of professionals who ask you a bunch of questions. In a few weeks you go back and do it again. If you pass the hurdles, you get the appropriate prescriptions to have filled. The prescriptions are for anti-emetics and phenobarbitol. Yes, I've asked a few questions of my own. I've been considering taking this route as of late. My progress is ramping up. I'm essentially a quadrapalegic but have full mental faculties and I'm being cared for by people who don't really know me or care about me. Additionally, my husband is here less and less. While I need him more and more. My family visits infrequently. I spend an inordinate amount of time alone and I'm coherent enough to know it. I see the road ahead. I live here. I may as well be dead sooner than later.

"What if the hokey pokey really is what it's all about?" Scary thought. If that's the case, I didn't hokey pokey nearly enough. Family. Family is what it's all about. And, once again, I didn't make family a big enough priority. Pregnancies were not celebrated events. They were looked upon as lost freedom and a slew of missed opportunities. Now, where did we get those ideas? I was steeped in that philosophy as my mother bemoaned the misery of her life. She never hesitated to tell us, her progeny, that we were the reason she struggled in life. That she would have traveled had we not been born. Is it any wonder that I cried in horror when I became pregnant? My husband wanted to delay having a family, so I was certain he was going to leave me as soon as he found out. I wish I knew then, what I know now. My daughter is my greatest achievement, my best investment, my pride, and my joy. My life has been blessed in so many ways. I couldn't even fathom it at

And so it goes...The holiday season is upon us. With it comes the inevitable pull to go home. Christmas carols like "I'll be home for Christmas " just fuel the fire that burns for home. I want to decorate my home inside and out. Every advertisement reaches into our hearts and magnifies our lonliness. What are we to do?

1 A lot of emotional drama has happened with me once again. First, I went ballistic when my husband sprang another nasty little surprise on me. He told me in an offhand way that he would not be visiting me over the weekend when he was aware all week long that was the case. That was the culmination of a month of nasty little surprises  I got all month long from my conniving husband. I figured out that after he talked me into a limited power of attorney for the purpose of listing then selling our properties, He sold property to his brother. After questioning my husband he feigned forgetting to tell me that he sold some property to his brother. He also told me that he did not list the properties per our expressed verbal agreement. Additionally, he sold a house and four lots for about $25,000.00 UNDER market value. Within the next few weeks, he tells me (after the fact) that he sold our retirement home on a contract basis (again for less than market value) to his brother's daughter

So much to say...So little energy. That is how much of my life is these days.

Books, specifically audiobooks, are my faithful companion. Each evening I am put to bed with my iPad and an audiobook queued up. I fall asleep to a story which keeps my mind occupied and out of dangerous territory. Today I finish "reading" Kathy Reichs' "Seizure", about four intrepid kids who've had their DNA crossed with wolf DNA (read "Virals" for that story), Who go on a hunt for pirate's booty to save their parent's jobs and to keep their "pack" together. It's a great little romp on the east coast, Charlestown, South Carolina. I've also read the Night Huntress series and followed the exploits of undead Bones and half-breed Kathryn "Kat" Crawfield. Including "Up From the Grave" By Jeaniene Frost. "Shiver", "Linger", and "Forever" by Maggie Stiefvater was a trilogy about kids getting a virus by being bitten by other infected wolves. The characters are likeable, hateab

This is the day. I cannot hardly believe it's that time again already.  Sometimes, I wonder why I continue to go to these quarterly appointments. I mean the news is never good. It's a recording of measurement declines. ALS has two key measures, FVC (forced vital capacity) and the FRS (the meaning escapes me but it's a questionaire that gives a score that is a numerical representation of how helpless we've gotten. Kind of a drag. But not really. Oddly enough, I look forward to these quarterly appointments. The ALS clinic at the University of Washington is such a positive place. We, the patients, are treated with the respect that we used to get when we were whole, non-disabled persons. (you know what I mean ). I touch base with a caring team of doctors and nurses who know my history and really know this rare and deadly disease. Well, the planets didn't align or maybe it was just a wild day of traffic after the storm of the season. Either way, I missed my appointment

A lady died tonight. Her death was not expected. Her death caused a stir. My nurse was her nurse and I can tell you that she sobbing. Distraught and barely holding it together, she gave me my medications. King County Rescue arrived with the coroner in tow. It was easy to piece together that something big occurred. The family arrived and those two big boys were red in face. They left with her belongings. So sad. So tragic but hopefully she's gone home. I said a prayer for her as the funeral home wheeled her earthly body out of the building.

The majority of my fellow residents at the nursing home are in their late 60's on up to their late 90's. The median age is 76, I think. Some of the residents have Alzheimer's or dementia of some type and many residents are not capable of meaningful communication. Some people are transient, meaning they are here to rehab and move on. A few are sent here to die quickly. That's sad seeing anxious, crying, greif-stricken faces. Some residents are simply non-social for whatever reason. Consequently, meaningful conversation only occurs between myself and caregivers, friends, and family (in that order), Rather than fellow residents. Oh, I attempt conversation all of the time. Mostly, it's an exercise in futility but I try anyway. The few that are conversant can no longer understand me since my mouth and face muscles weaken. It's a tough reality. Luckily, I can still smile and say, "hello", "hi", "bye", and "no" when I need and

It's amazing all the things I worry over in the course of the day. Some worries seem so legitimate, such as when certified nursing assistants (CNA) manage to hurt me when performing routine caregiving, such as transfers into and out of bed or when they are changing my brief (also known as an adult diaper). (Yep, I wear them, laugh it up now and get over it. It's another grim fact of life when one lives in a nursing home. It's not that I'm incontinent but the aides are spread so thin that they cannot whisk me directly to the toilet... ). Anyway, doing normal things can be painful when aides are poorly trained or merely ignorant of the physical deterioration of ALS. I worry that I'm not getting enough liquids in a day to stay hydrated. I should have 3000 ml/day. But I'm lucky if I drink 500 ml. My supplements are administered through my feeding tube with water. I am not sure how much plus, I sweat...A LOT...I'm in an overheated environment and I sit in a pow

I did it...I pulled the trigger on a purchase I've been denying myself for years. I bought a Keurig and I flat out refuse to feel bad about it nor feel guilty for it. My husband made me postpone so much of my wants and desires in my life. I cannot blame him entirely. I blame myself for working so hard for his approval. I knew it made good economic sense when I wanted to buy one when they first came out but he thought it frivolous. I argued the savings versus buying prepared drinks at Starbucks. He argued that I should give up Starbucks altogether and I tried. Instead I used a donated espresso machine that was tedious and time-consuming and added my own cream and syrup. This was a poor substitute that I eventually abandoned in favor of the convenience and joy of hitting my local Starbucks. Again, with receipts in hand and numbers crunched, I had proof that it was a good decision for us. He deflected saying we would shop different brands. We looked at the Nespresso at Sur La Tabl

The classic David Bowie rock ballad is running through my head as I sit in my power wheelchair with my v-pap strapped to my face. I mean, how space age is this?! And I'm communicating with human beings all over the planet from my Tobii. When I was a kid, the Viet Nam war was regularly on the news.  The Bay of Pigs was a reality. There was no such thing as a reality shows. Astronauts walked on the moon and we watched it on TV. We stood up at the beginning of class and put our right hand over our heart and pledged allegiance to the flag and the United States of America. I watched The Nightly News with Walter Cronkite, Dragnet, Lawrence Welk,  Hee Haw, and Laugh In with my grandfather. I watched Sesame Street, Mister Roger's Neighborhood, the Brady Bunch, Partridge Family, Wild Kingdom, Disney, and lots of cartoons. With my mom, I watched Dark Shadows, Peyton Place, Days of our Lives, Twilight Zone, and movies, especially scary ones. You know what's scary? All the things

.One of many in a classroom full of fresh-face kindergartners. Reading about Dick and Jane and Spot. Raising our hands to answer questions on what we read. I know the material, reading comes naturally, my people read to me. Some kids struggle, having to sound out the words one letter at a time. It's got to be hard, I just want to do it for them. All of the sudden, I get a familiar tingle. Oh no! I have to go. I raise my hand. But there's a sea of hands up in the air. Some kids are practically jumping out of their little wooden chairs in an effort to get chosen to give the answer. The questions are so cinchy, as we used to say. But, I'm back several rows and she can't see the quiet little new girl. I tuck my leg up under my bum, making me taller but allowing me to remain obediently in my seat. I really have to go. What do I do? I'm torn between bodily necessity and having to be a good girl. I must be a good girl. I can't make anybody angry. I must obey. My litt

Had trouble getting to my blog today. Got up late, just in time for lunch. Got my "office" set up then logged in. (an everyday challenge) Just got to Blogger when I was pressured to go to the diningroom. I know better than to go in before 12:30 because I just sit there watching trays get passed and other people eating. Lunch gets delivered hot and on time but it cools before I get to it. Hot food is a thing of the past. As is healthy food. I get bored and leave my table. I get reeled back in but a pungent aroma hits me from the next table over. Oh! No way! I can't eat next to that smell and off I go again. I tell the aides what the problem is and none of them understand me. What a waste of time and energy! I head back to my office but see a nurse that understands me and I get my point across. The offensive odor gets neutralized and I get to eat my cold stew at 12:30. After lunch I get back to my office, get Blogger back up, and my massage therapist shows up. Now, I am

Omissions are lies. And my husband is up to his old tricks.  Ever since I became ill, he has lied to me, lied about me, and failed to pass on vital information. This time he weasled a real estate power of attorney out of me to put our properties up for sale. He was supposed to get comps then list the property for sale. We talked about selling to his brother but I stipulated that he needs to pay market value. He had agreed that we were not going to fire sale the property. Imagine my outrage and sense of betrayal upon finding out that he sold the property for about half of it's worth to none other than his brother! When I questioned him on the matter, he played it off like it slipped his mind to tell me. But I knew that was baloney. Then he wanted to know who told me. Yeah right, you forgot. Then he said that he was just shielding me from the unpleasantness. I called him on that one, too. I asked him how much. He said $40,000.00. I asked him where it went. He said he put it toward

I am grateful for my family today. My husband shows up practically every day with prepared food, snacks, or items I need or want. Some days he shows up empty-handed, but I guarantee it is not a disappointment. His visits mean so much to me. Just sitting and talking with my mate, lowers my anxiety, makes me laugh, and makes my life with ALS bearable. He reads books to me. I listen to audiobooks every day but that is a solitary activity and I love the sound of my husband's voice and he chooses different books than I would choose. He doesn't just show up. He's also engaged and invested. Together, we draw a crowd. Other residents join us or sit on our periphery. It's fun. Hell, we're fun! At the end of our time together, we go to my room where he flosses and brushes my teeth, cleans my ears, plucks stray hairs, massages pain-relieving lotion into my contracting hands and/or straightens up my room. My sisters visit separately and their visits have different flavors.My

Undoubtedly, you have heard the one about "I was sad that I had no shoes until I met a man that had no feet". On any given day, I can be be prey to self-pity. When  I waken in pain due to poor positioning, or when I go without a meal due to being lost in the shuffle, or when I'm stuck in a damn old folk's home, it is easy to feel neglected, abused, and wronged. But today I learned of a man that became paralyzed and must live in an adult family home that is flea-infested, where they don't bother with positioning nor laundering the bedding very often. They have failed to offer him a meal for sixteen hours straight! Allow me to express my gratitude for the relative safety and cleanliness of this place. Generally, I get a shower twice per week at which time they change my bedding. And this place certainly does not have fleas. Thank the good Lord!

Today is my birthdate. Does anybody know?  Apparently not my "friends" and caregivers at the home. For all of the "I love you"s that get readily voiced around here, I do not feel the love. Famous last words. About the time I printed those ungrateful, selfish, and self-centered words, I get flowers delivered from  ProFlowers.Com, which is my daughter's m. O. They were gorgeous roses of white, peach, and dual pink interspersed with sweet-smelling purple stock.  The bouquet was a glorious first clue of how my day would go. (sigh) When will I learn to be grateful in All things?

Started my day in a snit. Housekeeping cannot seem to get together on getting my clothing into my dresser drawers, instead packing shorts, tank tops, and pajamas into the closet on hangers. Those closets get so overstuffed the clothes end up in a pile on the floor where nobody bothers to pick them up. Then an unsuspecting aide arrives and asks me what I want to wear. I respond, "What do I have? " I get asked the same question as though I never answered and I blow a gasket. Woe is me, nobody greeted me with a smile and a"Happy Birthday! " Nobody surprised me by cleaning out the closets nor did they lay out my Birthday clothing. I refuse help until my closets are clean. I've been waiting for weeks for my regular aide to catch on to my routine. God knows she can't understand my requests between my ALS accent and her Ethiopian one. But, today I make my stand and have the Resident Care Manager making order so I can make some logical decisions. A waste of her va

Sleep, I've been sleeping a lot more lately. Generally, I wake up or am awakened at six or seven in the morning. Next is my breakfast around eight. At times, I will nap in between. Lunch is noon and I've been napping many days from breakfast to lunch (that is new for me). Sometimes I don't bother waking for lunch either. Dinner is five and while I am normally awake, I frequently opt out. Saving my appetite for more palatable fare.  And saving my energy for more engaging company, like my husband or the evening aides who have known me since January and know I am of sound mind. Part of my extra sleeping has to do with increased fatigue due to the ALS, but part is due to lack of stimulation. The company is not very interesting and the food is cardboard institutional. Additionally, I lack adequate outside access. Looking out the window is just not enough especially if that window doesn't open or looks upon graffiti-laden fences. If I were home, I would be sitting on the fr

I was called a free spirit by a woman who bothered to get to know me. I was shocked by her assessment. At that point in my life, I had "I don't know how many" jobs. I was a food service worker, cashier, bartender, typist, chiropractic assistant, rental assistant, real estate personal assistant, busgirl, administrative assistant, executive assistant to the president of an aerospace company, a business owner, a Mary Kay representative., need I say more? I was unemployed and looking with a newly-acquired accounting degree after 40. I was Alcoholismworking on my second marriage, blending-in my beautiful daughter, making amends, staying sober. Which implies that I was a drunk at some point in my life. On closer inspection, following a bad break-up of my marriage to my daughter's father, I got kind of wild. I attempted suicide, fell in hero worship with my paramedic and learned about skydiving. Went skydiving and had it videotaped for posterity.  Started hanging out with

We did it! We walked in the 2014 Walk to Defeat ALS in Seattle. We made our team goal and this was our first year of participation. We had a dozen walkers show up and what a great experience it turned out to be. There were balloons, vendors, ALSA friends, PALS, children, dogs, family, friends, music, cameras, and camraderie. I never realized how much fun I'd have! Way more people showed up to walk than I imagined. First, my daughter surprised me by showing up from sunny California on Friday night. How she and my husband kept that secret is beyond me. My sister, Renee, arrived with her bestie, Jennifer. My dad surprised me and walked for me and the Admiral at his place of work, a nursing home in Issaquah.  My step daughter, Angelique, brought my honorary grand-daughter, Lizzy, to walk. My brother and sister-in-law, Steve and Emily, roared up on their Harley Davidson. My friend and partner-in-crime, Lynda Muir, brought her daughter, Journ. My husband and top contributer, Rodney, br

Today marks two years from my diagnosis date. ALS sufferers generally live two to five years after diagnosis. I'm grateful that I've made it to the two year milestone and I still feel relatively good. I still take food by mouth although I am careful about what I eat. First to come off my menu was popcorn. No matter, I replaced it with Jelly Bellies, buttered popcorn flavored. Yum! This year I took peas and corn off my menu as well as soup with mixed consistencys, like chicken noodle and vegetable. I miss corn. The item that I miss the most is cold, juicy watermelon. That was my craving when I was pregnant with my daughter. It's my go to during the summer and I could put one away a day. This year I got choked up on one serving. I can still drink thin liquids but I have to extremely careful to tuck my chin to swallow. Yes, I occasionally choke and cough. I am no longer able to walk even with assistance. I think the last time  I walked was June, it felt like my knees were go

It's so easy to get frustrated when you have ALS. We who are accustomed to doing for ourselves, of having it our way, and doing for others are especially prone to frustration. Whether expressed or not, frustration is a tough emotion as it is akin to anger.I did not think I was angry but I knew I was very frustrated. Had I known I was dealing with anger, I could have employed my secret weapon, the Serenity Prayer.  (Oh yeah, I did that.) I could have talked to other people in my predicament. (Oh yeah, I did that, too.)  Or I could have spoken to a professional. (Hat trick! ) There is much to be frustrated about from sunrise to sunset. I cannot get myself out of bed, nor can I remove or adjust the face mask on my bipap, neither can I uncurl my own hands when they fist of their own accord. If my extra-sensitive call button is placed out of reach, I am unable to signal for help.When they ask me what I what I want to wear how do they expect me to answer with a mask strapped to my face

Lots in store for me this month. One of the activities the home has planned is a day at the Washington State Fair. I plan to go if for no other reason, I love the fair food. Scones, deep-fried pickles, popcorn balls (for my husband), cotton candy, Darigold flavored milk, lemonade, are among my faves. Additionally, my husband's union gave us tickets to the Point Defiance Zoo. That is a great activity for me, room to roam in the power chair and animals to gawk at. The second Sunday of the month is the regularly scheduled meeting of ALS Association Support Group. That one activity is the best lifeline to sanity and positivity I have in my arsenal. We compare notes on where we're at, what we're doing, what resources are available, and add humor and levity to the mix. We have slow progressors as well as fast ones and unfortunately we have to say goodbye to some. But who better to say goodbye to you than the very people who have walked the same path with you. This is also my

This week, containing the last holiday weekend of the summer, has been eventful. Despite my new tendency to take hour(s) long naps in either the morning or afternoon, I have discovered how to transfer photos from my external harddrive onto my Tobii "eyegaze" computer; watched "World War Z" on Netflix on my Tobii, shared "Heaven Is For Real" with the nursing home, enjoyed a lot of positive kudos for our group participation in the #icebucketchallenge for ALS, and read "Shadow of Night" on my iPad. Since it's the end of the month, allow me to recap. The first part of the month found me "Free at Last". I was finally allowed to drive my own wheelchair again since getting my license suspended last March. (That's another story.).  Part of the nursing home went to the Woodland Park Zoo in Seattle and my husband and I met them there.   It was a day of relative freedom and fun in the sun.  My daughter came to visit which always means fu

Make no mistake, a nursing home is a tough place to be. Most of us do not plan to be here. It may never even enter our minds. I was wondering if we would have to put my mother in a home. But I surely did not figure I would be in one. I've had very little experience with death and dying. Ours was not a close-knit family therefore we did not see the natural progression of life through the aging process to the inevitability of death. .Grieving was limited to the loss of friendships and the parting of my beloved grandparents after summer vacation. As a military family, we moved often and without warning thanks to parents who thought it easier to spring the upheavals upon us. I came to believe that all connections to people were temporary and short term. As a result, I was ill-prepared to deal with death as an adult. Nor was I much good at building long-term relationships. At the nursing home, there is much death to deal with. In my eight months here, I have lost many acquaintances

On Friday, August 22nd myself and 21 of my extended family and friends at Life Care Center of Federal Way did the #icebucketchallenge for ALS. We were blessed with news coverage when the local newspaper, the Federal Way Mirror showed up. Many of the employees and friends chose to participate and donate to find a cure. It was an exciting event and it felt good to be taking part in such a great cause.

I've told tales about how my family abandoned me in my hour of need. Unfortunately, they are true. However, I think it's important to let you hear about what my family had to endure as we went down the rabbit hole of fast-progressing ALS with a side of FTD (frontotemporal disease). It must have been June 2013 that I last felt relatively normal. My father, stepmother, and stepbrother came out from  Ohio for a visit. I was using a manual wheelchair but able to self-transfer. I thought I was handling life's challenges well. Although, I was blithely cutting people out of my life for what I percieved as grave infractions. First to be cut was my sister, the one related by blood and closest in age to me. She and I have always had very different personalities and have clashed many times on a variety of subjects. This time it was following a shared vacation to Maui. I'm an avid photographer and took many photos despite failing strength and coordination in my arms, hands, wri

.Have you heard of Ice Bucket challenge? It is an activity that somebody started to promote  ALS awareness and to challenge friends and family to contribute monetary donations to help fund research to find a cure for ALS. Well, it appears to have taken off like wildfire, or should I say, gone viral, through social media thanks to Facebook and Twitter. And most recently, thanks to celebrities, sports figures and teams, musicians,.Local news teams, major networks, etc. This is such a boon to the ALS community! We need the exposure so desperately. This disease not only devastates the sufferer physically, but emotionally, and financially as well. Generally the sufferer declines so rapidly, family and friends have trouble keeping up with the changes. Charitable contributions most often go to higher profile diseases who are also deserving, but ALS has no treatment nor cure. Only a series of unrelenting declines. ALS is considered a relatively rare disease as 30,000 people in the U.S. At an

I have found my "voice" and I refuse to be silenced. Paradoxically, it took losing my voice to the ravages of Lou Gehrig's Disease to find my writer's voice. I started my blog in 2010 and never really knew what to write about. I was pent up and fearful. I was afraid that if people knew what rollled around in my brain they would not like me. Today, frankly my dear, I don't give a damn. Since the ALS, I have learned that no matter the professions of love and support, ultimately, I am alone. All the thoughts and prayers in the world, while appreciated, do not talk to me, don't read to me, don't scratch my head when it itches, don't make sure I'm not being ignored, don't get my meals ordered, nor does it hug and kiss me. I cannot tell you how many times I was assured, "I will be there for you until the end." only to look around and not find them there. I've been told countless times, "If there's anything I can do..."

The morning brings routine. Flat on my back, raised at a 45-degree angle with a plastic mask strapped to my face providing air support and sucking all the moisture from my mouth and throat. This time I'm panicky because the mask slipped in the night and is stealing my air and blowing air into my eyes. What's more is I pressed my call button ten minutes ago and wonder how long I could survive if this had been an actual emergency. Luckily this situation is more nuisance than substance. Next comes the question of the day, "What do you want to wear today?  which gets my mental gears going. What day of the week is this? Believe it or not, it matters to me. Tuesday and Thursday bring regular visitors from my years of attending sober meetings. These are some of my truest friends and I like to look nice for them but not too dressy. Sunday I like to dress up for the Lord's day. If I have an appointment...You get the jist. Also, What's the weather going to be? Then I have

The mind is a wild and wonderful thing. Today a lot more goes on upstairs than people realize. Many people make the mistake that because I live in a nursing home, I must also be feeble-minded. That because I speak like a five-year-old (due to dysphasia), I must also have the intelligence of one. It's frustrating and exhausting explaining and proving myself to those around me. Particularly frustrating is repeating myself three and four and five times to people who regularly care for me. Now I am not prejudiced. On the contrary, one of the greatest benefits to being in this home is my proximity to other cultures. But the people who struggle the most with my speech and care are people who speak English as a second language.It's a challenge to come up with alternate ways to describe things that you need. Speaking of challenges, learning to use my Tobii alternate and augmentative speech (AAC) device is a doozy. I have always had a fairly easy time learning new programs and systems

  So much has happened in my life since my last blog entry! Let me just fast forward and tell you that all ends well...Eventually. September brought my husband leaving me, moving all of his personal belongings out of our home, hiring strangers to care for me, then taking off on our two-week Disney cruise to the Panama Canal. Our air-conditioner slow- leaked water,  buckling our diningroom subfloor. Our septic system failed. One of my two caregivers didn't work out. I alternated between all-consuming rage and soul-wrenching despair. I was seeing a team of therapists; physical, occupational, and speech.  One of my therapists called county mental health after I made an off-color remark about killing myself if only I had the ability. I thought the comment was more of a smart ass way of acknowledging physical helplessness. In retrospect, it was an indication of my increasing depression. October brought about a reconciliation of sorts. My husband stayed gone for six weeks. He did not