I have often joked, "pick your own natural disaster and call it home". Me...I live in earthquake country. It's crazy I know, but a small price to pay to be within 4 hours of any kind of weather I want, exquisite dining and culture, the Golden Gate Bridge and a short drive to some of the best wines in the world! For you, it may be floods, hurricanes, searing heat, sub-zero cold, tornados, or humidity (that acts like MiracleGro® to blood-sucking mosquitos!), but we all brave the elements, wherever we live.
Because there is generally no warning before an earthquake, there are measures I have taken to be prepared for when the "big one" hits. I check my supplies at least once a year, but for the most part, I don't have to think much about it, because I can physically go to that spot whenever I am feeling anxious, touch the supplies/check my list and ground myself with a measure of confidence. In addition to regular fire drills (stop, drop and roll), evacuation drills (remain calm and move quickly to the designated area) and earthquake drills (drop, cover and hold on), I know that if the time ever comes, I can go my spot, take a deep breath and remind myself that whatever else happens, at my core, I have the basics covered, I've practiced and I'll be ok.
Friends who know me well, know that I am a great believer in the natural order of the universe. Everything happens for a reason. There are no accidents. Most of the angst in the world results mostly from our own perception of words, circumstances or specific situations. Life and its experiences (good and bad) come at us thick and fast. We just catch our breath and we're on to the next "adventure". For me, it's not what happens, it's how I handle or react to what happens, that ultimately makes the difference in whether an event bends me, breaks me or catapults me forward into something infinitely better. My reaction ultimately determines my resiliance and perception of the event.
And...I can hear you all loud and clear! "Hey Kath...wouldn't is be just ducky if there was an emotional disaster preparedness kit?" A great question and there is! Today's post from the DailyOM - one of my favorite websites - reminds me of exactly why I subscribe to their daily newsletter to help me stock my psychic supply box with everything I could possibly need to weather life's storms.
This site is an online fountain of inspiration and practical tools to help each reader find his/her own center in the midst of the crazy, fun, chaos we call life. Their tagline is "Nurturing Mind Body and Spirit" and for me that is exactly what they deliver. Day in and day out the writers at DailyOM deliver a thoughtful and positive message, complete with practical suggestions, that reminds me of the emergency/disaster preparedness kit I have for the times when Mother Nature gets fussy.
Today's message is literally about taking a deep breath in the midst of all of the swirling and noise to touch base with our inner source, as a way to safely anchor myself to the universe and remember that I have everything I need to weather any (perceived!) threats to my emotional stability. I also subscribe to their daily horoscope and am frequently amazed at just how targeted the message for the day is?! I am regularly reminded that it is in my best interests to listen to and value the thoughts and opinions of others, and patience is a virture for which I will always strive! Some days I'm quite sure there's a secret satellite webcam following me so the writers will know EXACTLY what message I need to heed!!
So how about you? What do you do to keep your balance when the inevitable storms hit? Please share your stories here. In the meantime, "Cool Runnings" Peace be the Journey!
Last week's post regarding the Tentra as a prescription for daily living has turned out to be a great way to channel my blues! I'm starting to feel more like "me" again....here are a few of the highlights:
Give people more than they expect and do this willfully.
Work has been somewhat challenging. I've made it a point to ask about the "next steps" for each of my tasks. Most of the time, my colleagues have appreciated the extra effort. I've appreciated that fact that I at least asked/offered.
When you say "I love you," say it truthfully.
I've adapted this slightly to recognize and demonstrate appreciation for people in my life and to be specific about what they mean to me. I found a set of quotes over the weekend and have posted them to Twitter, recognizing specific Tweeps for what they bring to my life. It felt really great to recognize someone I've never actually met!
Never mock other's dreams.
I'm generally pretty good at encouraging the dreams and aspirations of those I love/care about, so I had no thought that this would be challenging for me. That is until my sister-in-law shared a "vision" that she had about her late husband (Bill's older brother) and then asked me if I thought she was crazy?! I found myself answering "It's not uncharacteristic, but if you think you did/are doing the right thing, then it only matters what you think and I will defend you to my last breath". She laughed and said she loved me - and it was a big deal for both of us!
Talk slow, think fast.
This still needs work!
Bless a person who has just sneezed.
Saying "Bless you" or "God bless you" is almost reflexive for me. But this week, paying attention to my intention I noticed the most of the folks in the surrounding cubes (including me) suffer from significant allergies. We're all convinced it's the circulation - which is good for all the desktops, but not so great for the humans. We are quite a sympony of sneezing, sniffling and nose blowing, punctuated by a chorus of "Bless you's", no matter who sneezes. I'm thinking of trying accupuncture as an alternative to Zyrtec and Puffs!
Spend some time alone.
I am really comfortable on my own and am fortunate to enjoy my own company. Maybe sometimes too much! I probably need to re-think this suggestion and consider reaching out a little more. Just a thought....
Read more books and watch television less.
This is pretty easy since I don't have cable. So I don't watch TV unless I'm traveling and staying in a hotel. And then...I'm a channel surfing, clickker crazed maniac! I fairly certain I have undiagnosed ADOSD (Attention Deficit Ooooohhh Shiny!!! Disorder), so I tend to read magazine articles. They suit my short attention span. It's hard for me to pick up a book and read. Tech geek that I am, I purchased a Kindle from Amazon and boy is it neat!!! I'm reading "The Zen of Fundraising: 89 Timeless Ideas to Strengthen and Develop Your Donor Relationships". Hey....it's a start!
Be gentle with our planet Earth.
As a youngster, I was very active in a Masonic youth group called Job's Daughters. One of the promises you make when you join is "I will try to do at least one useful act each day". Every day this week, I have picked up bits of trash that have been in my path and paid closer attention to my recycling habits. It really took me back to my childhood and that earnest promise to do or be helpful...every day. It's amazing how much litter there is!! I've felt like I was picking bits of lint off Mother Nature's beautiful dress. It's so easy to just pick it up and deposit it into a trash can. And it truly felt good to do something that only I knew about.
I'm not generally fond of having my photo taken, but my niece shot this when we were in Coronado (San Diego, CA) for a family reunion a few years ago. I love that she took the photo and that I am this close to the water! And yes....I am very fond of my bright yellow shawl!
That's it for me this week. How have you done with this list - let me know!!
I am very fortunate to be able to attend a local ALS support group, supported by the Greater Bay Area ALSA chapter, located in Northern California. Each month, anyone from the area is welcome to share a cookie, their story, and learn firsthand about how to cope with ALS. More importantly, in my opinion, is that for just a few minutes, attendees know without a doubt, that however hideous this disease is, one does not have to fight alone....there are others on this same journey.
I am always impressed by our group leader Eileen Nevitt's ability to secure top flight speakers. A few months ago, Dallas A. Forshew, R.N., BSN Manager, Clinical Research (ALS) at the Forbes Norris ALS/MDA Clinic gave a presentation on the ABC's of ALS. We were fortunate that she allowed us to film her presentation, which can be found on the chapter's YouTube channel.
Yesterday, Margie Petrakis, RRT, RN and one of the outstanding Regional Care Managers in
Northern California, gave an informative and comprehensive presentation on respiratory care and equipment for ALS patients. 90 minutes passed quickly as she discussed the physical mechanics of breathing, what happens to patients with ALS, and the various options to manage symptions, available to patients to maintain good quality of life.
Maintaining respiratory health is important, regardless of an ALS diagnosis! While especially important for ALS patients, some of the very basic things we can ALL do keep breathing easily are:
- NO smoking!
- Early detection and treatment of everyday illness - don't let a "little cold" grow up!
- flu/pneumonia vaccines
- avoid infection - steer clear of favorite germy hotspots like crowds, public transportation, doctor's offices, sick people, magazines, grocery carts, kindergarten classes, etc. and, if you must venture into these places, take precautions like paper masks, hand sanitizers, disinfecting wipes.
- Wash your hands!
Respiratory Care for an ALS patient breaks down to three major components: Testing, Treating symptoms, and Follow-up (clinic and home care).
Testing determines how efficiently your respiratory system is operating and gives clinicians the necessary data to make appropriate recommendations for your individual circumstance. In addition, you and your primary caregiver are the most reliable source for what is "normal" for you. You know your body best. In order to determine the best possible solution for you, it is critical to participate and partner with your medical team. If you experience any of the following symptoms, please share them with your clinician, as they could indicate the need for additional testing and/or solutions to keep you running your best.
- Excessive daytime fatigue
- Trouble thinking or concentrating
- Morning headaches
- Not feeling refreshed in the morning
- Frequent awakenings at night (known/unknown reasons, unusual sleep patterns, nightmares, night sweats, respiratory complaints)
Follow-up
Once you and your physician have agreed on a solution, COMPLIANCE is critical. And...it will probably take some time to get used to the new routine. Margie shared some helpful tips.
- Choose an interface (mask/nasal apparatus) you think you can live with - there are many to choose from. Some vendors offer special 30 day trial programs.
- Whatever interface your choose, make sure it fits properly (not too loose and not too tight) and that it doesn't leak into your eyes. An RT (Respiratory Therapist) can help guide you to finding the interface that is "just right" for you.
- If the vendor doesnt respond, contact your physician immediately and request a change of vendors early!
- Be persistent and keep trying. It may take a couple of tries to find the right solution.
- Keep a positive attitude and work with your caregiver to make the necessary routine adjustments.
- Enjoy the benefits of better breathing!
Each of us received a copy of "ALS Respiratory Decisions" A Guide for Persons with ALS and their families, produced and distributed by the Jim "Catfish" Hunter Chapter of the ALS Association. This concise and informative guide was written by Connie Paladenech, RRT, RCP with Sue Humphries, LMSW. I found this guide to be well written and as with all information written regarding ALS, is designed to provide some basic information. It should help guide the conversation with your professional health care team and is not, in any way, a replacement for sound medical advice. To find an ALS chapter providing services in your area, please visit the National ALSA website.
Angels are delivered to us every day. Sometimes we know...and sometimes we don't. We were fortunate to receive help from EXTRA HANDS FOR ALS, founded by ALS patient Jack Orchard and his wife. Matt Nevitt and Julia Miller were the students who came every Monday for about 6 months to be with Bill and me, to help out and be our "extra hands". I will always be grateful to, and hold a special place in my heart, for both of these sefless young adults. Today, I share the essay that Julia wrote about her experience. Enjoy!
Truly Living
When I first signed up for Extra Hands for ALS, I thought it would be a nice way to spend free time, volunteering with real people and trying to make the world just a little better. I had no idea that the day I walked into 1847 Linwood Drive would forever change me. Extra Hands for ALS is a program throu
gh which patients with Amyotrophic Lateral Sclerosis (“ALS”) are connected with volunteers who help them accomplish things they no longer have the ability to do on their own. ALS (commonly known as “Lou Gehrig’s Disease”) is a heartbreaking and debilitating disease that slowly deteriorates a person’s motor functions yet leaves the brain untouched, in effect holding them prisoner in their degenerating body until they die. ALS is a terrible disease, both for those who have it and for those who must watch their loved one slowly die in front of them. Yet to die from ALS is relatively easy compared to living with it. It requires an amazing strength and bravery, and an acceptance that our time alive on Earth is not guaranteed. Although he knew that this disease was terrible in every way, my patient Bill Lichtig lived with it with an uncanny dignity and was able to indirectly use the disease to teach me amazing life lessons. And he has changed me forever.
The day I met him, Bill wore glasses, had a cane resting against his knee and two golden retrievers lying at his feet. He stood up to shake my hand in greeting although I could see it pained him to do so. This was my first glimpse of what I learned was his steadfast resolve to live despite his disease, an amazing bravery I hope to one day see in myself. Bill has left me, but he leaves me with resonating lessons about three things: love, life and laughter.
Bill was a lover, of people, of life, and of laughter. You cannot just teach someone about love, but you can show them. Bill showed me that you must let people love you, even when you do not want to. Bill’s wife, Kathie, was his primary caregiver. This meant that she was in charge of feeding him, among other things. Seeing Kathie fearlessly feed Bill through his feeding tube truly showed me love. She chatted with him about unimportant things while she did it, I guess in an attempt to show him it was not a big deal to her. Yet through that action I could feel the outpouring of true, deep love they felt for each other. Kathie could have had a nurse take care of Bill, but she did not; Bill could have told her he wanted a nurse so as to not inconvenience her, but he did not. Bill allowed Kathie to care for him because he loved her, and Kathie never stopped nursing Bill because she loves him. There is a song by a band I like, Death Cab for Cutie, who sings a song with the lyric: “Love is watching someone die.” When I first heard those words I instantly thought of Bill and Kathie, who have taught me more about love than I may ever learn the rest of my life.
Besides love, Bill also taught me about life. One day, before he could no longer comfortably chew them, Bill was enjoying his daily snack of Oreo cookies and he said to me: “Cookies fix anything.” While unfortunately cookies could not physically cure Bill, they symbolized a deeper meaning. Cookies were all the small things Bill did to enrich the last part of his life. Sitting outside in the sun, petting the dogs, even sniffing the air in the kitchen as I attempted yet another meal under his instruction. Bill showed me that focusing on small, positive things can help you ignore large negative ones—or at least keep them from ruining your day.
One day Bill, who liked to speed in his motorized chair, was enjoying wine through his feeding tube. He told me if a cop pulled him over he was fine because he could truthfully say: “Officer, no alcohol has touched my lips.” I know his mischievous humor kept him alive when he no longer had the physical strength. This alone proved to me the importance of laughter, and he made me laugh constantly. Once he could no longer speak himself, he used a computerized voice, although typing was tedious and frustrating for him. He maintained his dignity, even when others wer
e not so understanding. For example, he was sometimes mistaken for a prank caller when using the telephone, but his strength to even recount these stories to me displayed an undaunted will to fight his disease. A coward would be embarrassed by such an event, but not Bill—by reliving the experience he was showing everyone he was still here, and still strong.
The most important lesson I learned from Bill came when he told me: “Yes, this isn’t an easy disease to live with. But there’s nothing I can do about it. I can either spend my days crying or laughing—and I choose to laugh.” This statement concisely sums up what I learned from Bill. I learned not to let small things, like forgetting an item on our grocery list or messing up our projects, ruin my day. I learned to see a small mistake as just that: a small bump in the road rather than the end of the world, as I used to do before I met Bill. He taught me that so much of life is mistakes. Who we are is based on how we deal with those mistakes and how we react in the life’s obstacles. We can cry or we can laugh, and it is always better to laugh.
Bill also taught me how to die. August 10, 2005.
I'm a huge fan of the ALSA support groups! They are a lifeline, when you receive an ALS diagnosis and think you are about to snap off the earth. That lifeline extends throughout the progression of the disease and then supports the grieving process.
Each group is slightly different, but the basics are the same. Each regional group meets perio
dically (usually once a month) and is facilitated by a volunteer, generally a licensed social worker. Patients, surviving spouses/partners, caregivers, family members and friends share their journey with ALS. It's a safe place to ask all of the "dumb" questions, find out about current research and clinical trials, share the more pragmatic aspects of dealing with the disease, learn from various experts (communication devices, construction, how to give/receive a sponge bath, etc.) and so much more. For me...it was (and still is) a place to feel normal and with patients in various stages of the disease and different progression, it's much easier to get a feel for the bigger picture.
To find a support group near you, check the National ALSA website.
Do not wait as long as I did!!! Find 45 minutes a day and get to Curves® if you are a woman or the YMCA if you are a man. There are lots of things you can do at home, but it is my opinion that you need a program, the equipment and the coaching to give you muscle strength quickly. Both Curves and the Y fit the bill. If your PALS is still reasonably self-sufficient (they can manage by themselves for 45 -60 minutes) get signed up and get going - every day. If necessary, get someone to stay with them for an hour. Whatever it takes...you will absolutely, positively need muscle strength to manage your PALS as they lose muscle capability. When you say "I've got you....don't worry"...make sure you've got a muscle (or three) to back it up!
Get connected to a mental health professional...NOW! I was very fortunate. On his own, Bill applied to Kaiser mental health very soon after the diagnosis. We got a fabulous psychologist - Sherry Batterson - I still keep in touch! She was a safe place for him to vent about what he was losing and how he was feeling. She gave him very concrete ideas on what he could do to manage his circumstances. Toward the end, she saw us both, primarily because I literally became his voice. She did a great job keeping us straight and helping us focus on what mattered most. I can't promise you a Sherry, but still strongly encourage both of you to find a psychologist.
Check with your PALS' psychologist, primary care physician or 
clinic doc for a prescription for some type of anti-depressent. In my opinion...depression is a very normal part of ALS and the symptoms need to/can be managed. I believe that the docs from the ALS specialized clinics agree.
I would also strongly urge you to consider (and ASK for) them as well! I didn't think I needed them, but my gynocologist (during a routine girlie checkup) prescribed them for me. I started taking a low dose (20mg) of Prozac about 6-8 weeks after we got the diagnosis, got up to 40 mg about 6 months in and then took myself off about 8 months after Bill died. The meds give you the "headroom" to to deal with everything that's happening. I truly believe that the meds allowed me to keep my head and my sanity as we dealt with the freight-train pace of Bill's progression. Just so you know...Prozac has a 6-8 week "ramp-up" time, so sooner is better than later!
