IntrinsicTina

I'm chagrined to realize how little I've managed to produce blog posts. I must admit that I've been so fatigued to the exclusion of all activities, save for listening to my beloved audiobooks, bathing, and attending my monthly ALSA meetings. Oh, and watching the TV news, and movies via Seattle Public Library and Netflix. How small my world has become. I have read some good books, which I chronicle and review on www.Goodreads.com/IntrinsicTina. I'm an avid reader of detective novels, mostly pulp fiction, formulaic works from Jonathan and Faye Kellerman, Kathy Reichs, Michael Connelly, Clive Cussler, and James Patterson. But I've grown fond of biographies and memoirs, listening to the stories of Drew Barrymore, Wildflower , Marial Hemingway, Burt Reynolds, Enough About Me , Carrie Fischer, and Sarah Silverman, to name a few .  You may think that my life is not worth living, but I think it is. I can no longer do what I used to do, but I have love in my heart and a ...

Had I not gotten ALS, I wouldn't have had the opportunity to meet so many new and interesting people, nor had the opportunity to get to know the heart of the people already in my life. People with ALS that impacted me but lost their battle. Where do I begin? Gail Dubose came to our support group meeting in Kent only a few times but I remember her. She relied on her ex-husband before going into assisted living, then she was gone. I never would've known had I not "friended" her on Facebook. Notification of her funeral came in the form of a Facebook event post by her surviving family members. Unfortunately, my husband had a belly full of ALS and wouldn't take me to the service. I got to know people from all over the world thanks to the website www.patientslikeme.com. It was there that I met so many PALS; we support each other to the bitter end, we can't help but become invested in each other, we're on the same plight. But this support comes with a down...

.     23 Had I not gotten ALS, I would not have met and experienced so many interesting people nor experienced the depths of people I already knew. Through the ALS Association Evergreen Chapter, I met an extraordinary couple with expansive hearts who turned their personal ALS journey into a lasting mission benefiting persons with ALS (PALS) in our region. Because of them, I personally benefited: by having a platform in which to connect one-to-one with other PALS, demystifying the disease and its processes; by being able to borrow necessary durable medical equipment as it became necessary with a fast-progressing paralyzing illness; by becoming empowered to do what I can to fight for a cure; by being offered educational resources and opportunities to learn about aspects of the disease I, otherwise wouldn't have been aware of. This amazing couple continue to allow PALS, their families, and caregivers meet right in their living room. Carl's first-hand insight and z...

Picture perfect weather on the banks of Lake Washington, the #2015WalktoDefeatALS was a wonderful event for walkers, drivers, riders, and volunteers. What wasn't to love?! Family, friends, young, old, smiles, hugs, kisses, dogs-on-the-leash. The happy hub-bub of greeting, check-in, t-shirt pick-up, assemblage, live music, a rousing speech by one of our own, team photos, selfies, and departure group by bouyant group. We raise awareness, money, and our spirits. Today we are one in our cause. Today we are not alone in our disease. Today we have hope. Today we matter. I'm so appreciative of my family, my friends, and the surprises I received when my mother showed up as well as my former coworker. Even my sister who's been fighting multiple myeloma showed up in a wheelchair to support me. My mother also showed up in a wheelchair. This is a BIG deal! My daughter traveled from SoCal to walk in this event. My husband's family showed up to walk again this year, his brother and...

Support group nite. The usual suspects, being Anne ALSA , Barcha, Ann, Nathaniel, Peter and his cousin, myself and my husband. Plus, a few national ALSA reps, a sweet man whose name I'm ashamed to say I forgot, and a man new-to-me but not to the group, William. A nice size group. Good energy! Practicing meditation and mindfulness is getting easier than ever before for me. Barcha is so skilled at speaking gently and purposefully and guiding us into relaxation. I thought I knew something of meditation, coming from the standpoint of recovery. I, actively, work a twelve-step program of recovery And, in so doing, there is a step that calls for seeking out the will of one's Higher Power through prayer and meditation. Admittedly, a tough one for me to do regularly, even after seventeen, almost eighteen years! Now, I wonder if I tried too hard or was too glib about it. Anyway, I just came out of our meeting peaceful, happy, and renewed, mentally. I wanted to acknowledge that. It...

ALS Association meeting every third Wednesday night of the month is the port in the storm that is ALS. I've been attending these sanity-saving gatherings since my diagnosis in 2012. Throughout the years I've been in these get togethers, meeting people with ALS, their families, and their caregivers, I fail to understand the PALS who don't tap into this valuable and free resource. .Don't get me wrong, I'm not judging. To each, their own. I just do not understand. Oh, I understand the fear of the unknown. The fear of looking "the beast right in the eye".  If you're anything like me, you never knew what ALS was, let alone met somebody with ALS.  If you're anything like me, you never knew what ALS was, let alone met somebody with ALS. Or you associate ALS with Stephen Hawking and God knows, you don't look forward to looking like him! Sorry Stephen. I'm no prize anymore, either. But, what I get is invaluable...Understanding. I get this in n...

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...

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...

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...

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.

.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. A...

I am not-so-independent but wish I were more so.  Stopped driving due to the rapid onset and pervasive weakness especially in my right-dominate hand.  Sold my Harley Davidson Deluxe and Subaru Outback, shopping for an economical wheelchair van (Dodge or Chrysler?).  Legs getting weak, balance is not-so-good but I do all I can to preserve what I have: good nutrition, supplements, water aerobics, arthosage and manual ligament therapy. I'm getting limited care at the University of Washington in Seattle but get nowhere when I've mentioned voice-banking.  Hmmm.  Considering Virginia Mason as most of my PALS friends get fabulous care. We are active in our local ALS support group. I am on social security disability and Medicare (which I've paid into all of my working years) but I lost my job at the onset of my symptoms.  Was working as an accountant for a small mfg business who tried to coerce me to commit blatant fraud.  I got super-stressed as I held t...