How is Patrick Doing, #8? Part II - Mobility, Spacisity and Marijuana

Part II of "How is Patrick doing?" is primarily about our experience with obtaining cannabis to use for some specific symptoms. The symptoms we are trying to manage are anxiety, spasticity and clonus (tremors). Not all patients develop spasticity and clonus (tremors), but they are an ongoing battle for Patrick. We've tried conventional medication, but it just isn't working so we've entered the world of medical marijuana. Marijuana is common topic with ALS patients and we find that many patients use it to combat a variety of symptoms. There are even theories that marijuana slows the progression of ALS.

Marijuana conjures up a lot of images for me. I've talked with people that feel strongly that marijuana can help everything from Alzheimer's to the common cold and on the flip side there are those that think its just a hallucinogenic used by "pot heads." At this point I don't think I would take either of these sides, my suspicion is the truth is somewhere in between. 

Marijuana, Dispensaries and 420 Doctors
Spasticity causes a stiffness in the muscle making it near impossible to relax. For Patrick this happens in his legs, often during high stress times, which further exasperates the moment. Lately, this spasticity is accompanied by tremors (involuntary movement of the legs up and down) together these are a nasty set of symptoms. Recently, this occurred during a transfer which made for a very unsafe moment. 

Patrick has been taking a medication to help control the spasticity, but it just hasn't worked. So, we are looking at the use of medical marijuana, it comes highly recommended for this type of symptom management. We spent the last couple days navigating the world of legal cannabis in California. We started with getting a written recommendation from Patrick's neurologist for the use of marijuana. I wouldn't call the recommendation a "prescription," its just a document that the doctor states why the cannabis is going to be used. 

We, in our naive thinking, took the "recommendation" down to a dispensary, you know like when you get a prescription you head down to the pharmacy. We found out quickly that medical marijuana is a little different. Upon arrival at the dispensary there was a security guard at the door, he immediately told us that the patient must go in alone since we didn't have a "caregiver approval form." This caught me a bit off guard and I tried to explain how difficult that would be for him. The security guard was nice and he explained that although he understood our concern, this is California law. I think at this point he realized that we had no idea what we were doing... So, he asked if we had our approval letter or ID for marijuana purchase. I showed him the recommendation and he said you need to visit a 420 doctor to get an ID.  He gave us the name and a coupon and we headed out on the next leg of the journey.

A funny side note... years back when the grandsons were little, they were sitting in my kitchen having a snack. I asked Anthony, who was in kindergarten at the time, how he felt about Christian, his younger brother, going to preschool. His entire face showed disgust, he looked at me and said "grandma, look at him, just look at him, he can't go to preschool." I looked over at Christian, his face was full of cupcake and he had the biggest goofiest grin. This line of Anthony's has become an ongoing joke with Patrick and I.  So, when we got back in the van Patrick looked at me and said, "look at me grandma, do I look like someone who can go into a Marijuana store alone?" He did make me chuckle.

We got to the 420 doctor and headed in to see about getting the ID. Now, to say there are interesting folks in this place is an understatement. Just to prove my point I'm including

The van parked next to us...

The zombie in the front seat

photos of the van parked across from us. I did a double take when I saw this guy in the window. No, he's not real but I figured out pretty quick that the dude in the backseat was...

I was a bit irritated going in because the handicap spot leads to a sidewalk that wasn't safe for a wheelchair. I don't think that enough energy is put on making sure that disabled people have a clear route into buildings - not just a handicap spot, but a pathway without large bumps, unlevel thresholds and cracks. I pointed out my concern to the clerk who I believe filed it pretty quickly, under "I don't really care." Yes, this just added to my irritation. After hearing about the wait time, we opted for putting in for an appointment the next day, 1-2 hour wait didn't appeal to us.

So, that ended day one... a bit more educated but not accomplishing much. Day two we headed down to our appointment, decided to park on the opposite side of the building eliminating the bumpy sidewalk but not the threshold issue. Because we had an appointment the wait was shorter and within a hour we were meeting with the doctor. Many of the complaints on Yelp for this particular place were that the doctor didn't spend enough time with folks. That was not our experience, the doctor explained the different methods of ingesting marijuana, what he recommended for Patrick and how to measure using the different types. He was quite informative. He couldn't recommend a dispensary but he did say that if you call the place and they answer "Hey" - that's not the place for you. That was kind of funny. 

So we left the doctor with approval in hand and a caregiver ID. We went to the nearby dispensary to see about getting some medication. The guard let us both in with our approval letters. The dispensary was an interesting place, you go into a wait room and they call you back to the "store," I think that's what I'll call it. The person that helped us was a young girl with very little knowledge about what we needed. There are different ingredients in marijuana that provide different benefits depending on your ailment. I guess I thought it would be more like a pharmacy with a pharmacist to help you with medication. Additionally, I assumed that there would be a standard amount or recommended dose. Nope, you really have to do research and even then you start with a low dosage and see how your body reacts. It's all very different than the usual prescription process. 

The store was fascinating although a bit overwhelming. They sell all kinds of stuff filled with marijuana; soda, candy, tortilla chips, oils, salves, etc etc. Fortunately, the ALS clinic and the doctor we met were in agreement on what we needed so we bought a tincture which is an oil you you drop into a beverage.  

I cannot tell you how strange I feel buying marijuana, my images of potheads, getting the munchies and bongs. Yes, I think there are people who use marijuana for legitimate use, but equally I think there are "potheads" in the world. At least, I sure did see a variety of folks the last couple days.

So, we are back from our travels and preparing to use the tincture of marijuana that we got. I'll keep you posted on how well it works, I'm hopeful. We really need to combat these issues of spasticity and tremors, so if it works I'll happily journey back to the dispensary, although I think perhaps a different one, one that doesn't answer the phone "hey.":)

Mobility Issues Continue 
At this point Patrick can no longer do any type of ambulatory movement. He can be pulled into a standing position but his balance is not good and he needs a walker and his chair immediately behind him. This allows for dressing, and going to the bathroom. This is a tremendous help and I'm not looking forward to him not being able to stand. He continues to to control his wheelchair by moving his arm to guide the chair forward/back and turn however, this is becoming more labored. The next step will be for an attendant (Me:)) to control the wheelchair movement. I don't think he's looking forward to this, especially because I've not proven to be very good at driving his chair. Ah, well he's stuck with me...

The lack of mobility creates many related issues: blood clots, constipation and muscle apathy. Movement truly keeps the body healthy and without it creates problems. I know that when I sit for long periods of time my body gets achy and stiff (yeah, I'm feeling my age), so if you sit all day there are bound to be problems. We do physical therapy each night with his arms and hands this helps to combat them becoming stiff and curled. I roll him over from back to side each night to eliminate him laying in one place all night. So we do our best to address issues but there is only so much that can be done.

Three Years...
December marked three years from the date of diagnosis. The progression for us is difficult to measure. We don't see changes every day or every week - it is a much slower decline. However, we know the progression continues and when I read back on the blog posts "How is Patrick Doing" I reflect on the challenges at that time and some seem oh so distant. I've often wondered how we've got here, but I venture clear of the where are we headed as best I can. 

Life continues and time marches on... we will do our best to meet the challenges that come. I'll leave you with a couple photos from the past month...

One of Jake's Favorite Spots

At Farrell's Ice Cream Parlor

All the best to you and yours! 

Susan

Patrick and Susan

This past week, fellow ALS journeyer Susan Catlett passed away. Her passing hit Patrick and I hard. It wasn't unexpected but it never seems to lessen the blow, frankly loss is loss. Susan and her husband Cliff, were two of the first people we met at ALS support group three years ago. They welcomed us into our new "ALS family" and over the past few years we developed a friendship started by an awful diagnosis, a reminder that in all things there are silver linings. Susan and Patrick were the first two ALS patients on the Sacramento ALS Association Board of Directors, bringing a patient perspective to the board and being the voice of ALS patients.

Susan Catlett was courageous and I don't use this term lightly. I've heard people say "oh she is so courageous, she has a terminal disease." I don't believe a person is courageous because they get a disease, I'll take this a step further and say I've met people with serious diseases that I don't find courageous. It's how you chose to manage having the disease that makes a person courageous not the other way around. 

Susan Catlett took an awful diagnosis and did what she does best, treated it as an opportunity to educate others. She was a teacher all her life so after being diagnosed she began blogging her thoughts and experiences on living with ALS (www.susanssteps.com). What I truly admired was her honesty, she didn't sugar coat it. If she had a "sad day" she wrote a blog on having a sad day. She talked about the physical challenges, remaining positive and finding purpose with ALS. She continued to inspire, educate and draw awareness to what is truly "an orphan disease." In addition to the blog, Susan spent time sharing her experiences with interns at UC Davis and various church congregations throughout the area. She was an inspiration to many people and a tireless advocate for ALS awareness.

I have no doubt that Susan will continue to inspire those she left behind.  A 100 years from now someone will be reading her blog and think "what a courageous woman." I'm also hopeful they will be thinking "I'm so glad they cured ALS." Farewell Susan, dance with the angels, walk on strong legs and watch over Cliff from above. Patrick and I are honored to have known you.

How is Patrick Doing #8?, Part I - Speech and Other Bulbar Changes

Patrick's progression over the past six months continued to challenge us. We are now faced with a new set of declines involving the bulbar region (head and torso). These changes are related to his chewing and speaking They are sad and trying and we continue to work to find ways to adapt. I'll admit I've had some profound moments of frustration, where I just kind of throw up my arms. The disease never relents, it may slow or plateau but it never relents. Part I of this "How is Patrick Doing?" blog is a discussion of the challenges due to bulbar decline. Part II will go over some of the continued mobility problems and the medications we're using to combat these symptoms.

With ALS everything is about time and progression, you know that the changes will come but you don't know when. We've witnessed other patients progression, but they vary by individual so there is no road map to prepare for the things to come, you only know they will come. I'm not sure if it would be comforting to know what's next or how soon, sometimes I wish I knew, but it wouldn't really change anything. There has always been an overlap with Patrick's issues; for example we now struggle to understand Patrick's speech but in truth his voice hasn't sounded "normal" for over a year. So this is a current challenge but certainly not something that happened overnight.

The Importance of Communication
There are so many losses in this disease. An ALS caregiver described the losses as a deck of cards, every week a card is removed and you are left with the remaining cards. ALS is a relentless foe, so eventually it takes all the cards. By far the greatest loss over the past six months and perhaps throughout this entire journey is Patrick's ability to speak. At this point I would say I can understand 50% of what he's trying to say, but if I'm distracted or if he's tired I probably won't understand at all.

The loss of speech creates such a void for me and him. The conversations while driving in the car, while going to bed or while sitting outside on the porch are becoming less and it is so frustrating for him when I ask him for a third time to repeat what he just said. He has such a quick wit and always makes me chuckle but if I ask him to repeat it over and over, it simply loses its impact. He will sometimes give up trying to say something and I fight the urge to simply smile and nod which often folks do in response to not understanding. Frankly, he knows that they don't understand. Sadly, I've become the translator for him in most situations.

At a past support group I remember a conversation where a caregiver was complaining about taking over the driving responsibilities from her husband and she was frustrated because her husband was an awful backseat driver. She just wanted him to "be quiet." After she said that another caregiver responded sadly, "be careful what you ask for..." her husband had recently lost his ability to speak. Frankly, I felt sorry for both caregivers - I hate backseat drivers and I hate Patrick losing his speech.

Johannes assisting with SGD Setup

We are fortunate to live during this time, a hundred years ago there would be no real method to communicate with an ALS patient except perhaps yes or no questions through blinking. But today we have speech generating devices (SGD) that patients use to continue communicating. I'm sure you've seen them being used by Stephen Hawking or Steve Gleason. The device is attached to the front of the wheelchair and controlled by eye movement. Patrick received his Tobii Speech device in November and has been working to learn to use all its features.

To say using a speech device is the same as speaking would not be true. The device follows your eyes and you select phrases or words by allowing the cursor to dwell on a selected item. It takes some time to put a sentence together and makes it near impossible to contribute to an active conversation.  OJ Brigance, of the Baltimore Ravens, who was diagnosed in 2007, explains it well, "I have been able to communicate well with my DynaVox, even with the loss of my voice. The only frustration is the inability to communicate real time and conversations. By the time I finish typing, the topic may have changed, so it requires patience. With that being said, praise God I can still audibly communicate."

Moving your eyes in this manner has its own level of exhaustion, the eyes were simply not made for it. I find that conversations are becoming more directive: I need this, please do that etc. We both agree that loss of speech is the worst card that ALS removes from the deck. As with all his losses we are learning to adapt, but this is like removing the joker from the deck of cards. The joker fills in when something is missing so without it there is a big void.

Recently, Katherine Adraktas with the Sacramento ALS Association did a video of us to promote the speech workshops and loan closet services provided by the association. Patrick is using a Microsoft Surface and Quha Zono wireless gyromouse in the video. The mouse works by moving the head. He is now slowly making the change to the eye gaze technology but he's used the Zono mouse for about a year.

A word to fellow caregivers and ALS patients, the process of getting a speech generating device is long, for us two months from start to finish, so don't delay in getting the process started. 

Other Symptoms
Respiratory: Patrick continues to use a breathing machine at night called a Trilogy. This machine helps his diaphragm rest by forcing air in and out, a little different than a c-pap that only provides a constant flow of oxygen. Unfortunately, because his facial muscles have become so weak, Forbes Clinic does not have the equipment at the mobile Sacramento clinic to measure his breathing capacity so we don't know his current breathing levels. However, he doesn't need the machine during the day which would indicate a decline so we are still in the beginning stages of respiratory decline.

Chewing and Swallowing: We use our tongue and muscles to move food around, clean out our teeth and make things ready for swallowing. They work together to assure that food makes its way down safely. This is a challenging area for Patrick and it has slowed his ability to eat, as well as making him avoid certain foods that are simply too difficult. We combat choking by cutting bites that are not too big and medications are easier to digest with a thicker liquid - we use juice. Water can be a choking hazard for an ALS patient, which still sounds odd to me, but it is true.

Odds and Ends: Patrick has some odd ALS symptoms in the bulbar region. Recently, he developed difficulties breathing when I baked bread and there was a strong baking smell. After discussing this at clinic the respiratory therapist concluded that this was due to the salivary glands developing spasticity when they were stimulated by the smells. No, there was nothing she could really do, except to say "that's a bummer." I couldn't agree more...

Another symptom is called the pseudobulbar affect which causes amongst other things exaggerated emotional responses. It's an over reaction like excessive crying or laughing to something that does not warrant it.  This has been an ongoing issue for Patrick and is common in ALS patients. He does have medication that helps keep this under control. We got the medication when he started crying when people were eliminated on Dancing with the Stars.

A Note of Warning
Part II of this blog is primarily related to our journey navigating the use of cannabis for managing his symptoms (there is plenty of humor in it). If this insults your sensitivities or you simply think it's wrong you may want to skip it. For me I'm in this journey for Patrick, if it helps with some difficult symptoms, I have no problem with him using marijuana. With all the medications he takes, challenges he faces and severity of his diagnosis the moral issue of his use of marijuana is just not significant to me.

I wish you all the best as we start this new year! Here are a few recent photos:

Us

"Storytime"

Patrick and Christian at his 8th Birthday Party

Monkeys During the Holidays

I've had a monkey brain for as long as I can remember. The monkeys in my mind have meetings, make speeches, write to do lists, worry and generally make a lot of racket. They shift their discussions quickly and no topics are off limits. They have meetings when I'm trying to sleep or wake me up during the night, they distract me throughout the day and I suspect Patrick would say on occasion make me a bit spacey.

I heard the term "monkey mind" years ago, at a workshop on how to reduce stress, meditate and bring calm into your life. Buddha originated the concept of "monkey mind" over 2,500 years ago. He emphasized the need to "manage our monkeys" through meditation to calm the mind; a bit easier said than done. Well the monkeys have been overly busy this holiday season and ideas for this blog are not as tidy as I'd like them to be. So, I'm writing this disclaimer, if this blog doesn't tie together neatly for you, just recognize that you have listened to not one, but many of the monkeys clattering around in my brain.

The holidays can create a lot of stress for people. It's a time of expectations, remembering the past and spending time with family and friends. Patrick was diagnosed with ALS three years ago, about a week before Christmas. I don't know the actual day, I could look it up, but it really doesn't matter. What matters is that our lives permanently changed three years ago. I don't dwell on the anniversary but it does enter my conscious at this time of year. I remember coming home from the ALS Clinic in San Francisco and stopping at Togo's for sandwiches. As the sandwich maker worked he talked about what he wanted to get his girlfriend for Christmas. He was friendly and rambled on about getting her the curling iron she had asked for, he wasn't sure if it was "enough." Why I remember this, I have no idea. I don't think I really listened to what he was saying, but when I headed out I told him, get her a little something more, like flowers, even if she didn't ask.

It's funny the things we remember and the things we forgot. We don't get to choose instead the mind makes these decisions for us - perhaps the monkeys have something to do with it. This time of year, my thoughts often drift to my dad, he died a couple days after Thanksgiving. I remember the call from my mom and falling to my knees. So, this time of year brings sad memories, but I try not to dwell, my father wouldn't want that. Instead we light up the house, buy lots of gifts for the grand kids and drink a ton of eggnog. I suspect we all have mixed feelings this time of year, it's a time of celebration and giving but also a time of reflection and remembering those who are not with us.

I love to give gifts, there is no better feeling than finding that "right" gift for someone you love. Best gift I gave this year was to my mother, I got her a cell phone. It was the Jitterbug brand that caters to the over 50 crowd (yes, I'm almost there too). She has been busy learning to use it which has been fun for her and all of us. She spent Christmas calling everyone and telling us she was working with her new gadget, for mom everything technical is a gadget.

So, what do you get someone with ALS? Caitlin and Corrinne both asked me this question over the past month. I didn't really have an answer other than "time." Truly time is our most precious commodity and for Patrick the thing he is most grateful. Corrinne is learning to sew (mom you would be proud) and for Christmas made Patrick a wonderful lap blanket. The lap blanket idea came from our genealogy research. I found the will of my 2nd Gt. Grandmother and she left a lap blanket to one of her children. After reading this, Patrick announced he would like a lap blanket. So, Corrinne set out to hand make a blanket for Patrick. It's a beautiful blanket with Denver Broncos on it and has already got plenty of use. She did an amazing job especially for her first time.

Caitlin is on semester break and has begun reading to Patrick. It started with a book on their Mayflower ancestor, Stephen Hopkins. When she asked her dad what he wanted for Christmas, he said that the time they spent reading was a gift. If you know Caitlin, you'll laugh at her response, she said "that's like giving someone a coupon for a hug..." I quickly responded, "I'll take a coupon for a hug" which she responded "ok but its a coupon which means its just a discount." She decided that reading to dad was not enough and that she would cook for us on Christmas. We had eggnog french toast for brunch and manicotti for dinner. The real treat was frozen hot chocolate for dessert - if you haven't tried it, its delicious.  Here is a link to the recipe: Link to Recipe

We are blessed this Christmas with a wonderful family. The monkeys were busy talking loudly and causing mischief but I think overall they spent most of their time enjoying the festivities. I hope the season has brought you much happiness and the memories of the past did not cause much pain, but instead provided you with grace this holiday season.

Happy Holidays to all! I did not send Christmas cards this year, but we wish you a very Merry Christmas and peace in the New Year. Here are some photos from our family to yours.

The Timmons Family (missing Justin who took the photo)

The House at Christmas

The skeletons helped decorate

Sofia

Caitlin in her new hat

Jake looking festive!

Life as a Caregiver

Patrick and I (Johannes & Vineet behind us)

I'll admit when I see a photo of an ALS patient, I look around to determine who is with them. Where is their caregiver? I know, that somewhere nearby, whether in the picture or not, is a "me." Someone who cares for the patient, making sure their needs are met and is responsible for their well being. With ALS, the level of care provided by a caregiver varies by the progression of the disease and areas of the body affected. But as the disease progresses the need to have someone care for the patient is absolute. ALS is not a journey one takes alone.

A few months back, I was sitting outside Starbucks enjoying some hot tea while Patrick was at an ALS Board meeting. A couple of gentlemen sat at the table next to me and began discussing what sounded like a business proposition. I'm not exactly sure of the context, only that one gentleman was obviously trying to sell his company's services for a large project. The man emphasized a number of times that he could commit 100% of his time to the project because he was "unencumbered." He went on to describe that his mother had passed away a couple months back and his divorce was now final so he was excited to be able to put all his energy into his business. He looked about my age - 50ish and genuinely seemed delighted at his newly found freedom.

I've considered this conversation a few times and I'd be lying if I didn't say that I have moments where I'd love to be unencumbered. No responsibilities, no worries and no expectations; and if this where my thoughts ended, I'd likely be in the Bahamas somewhere soaking up the sun. But after my romantic interlude with being unencumbered, my thoughts always drift back to a couple of truths; first, and probably because I am a caregiver, I think, wow I hope this gentleman doesn't get ALS, Parkinson's, Alzheimer's, cancer, etc. because whose going to take care of him? My second and much more significant, is how lonely it must be, being unencumbered.

The life of a caregiver is not glamorous. I hold many hats; I'm a barber, home care aide, cook, waitress, pharmacist, respiratory care therapist, dental assistant, comfort specialist, bug killer, back scratchier, driver, entertainment coordinator, nurse, secretary, manicurist and bookkeeper - to name a few. Caregivers are always responsible, so even when given a break, if something happens, we are the first number to call.

I've been caring for Patrick since his diagnosis, now nearly three years. The responsibilities started with simple things: buttoning his shirt and clipping his nails. Now, three years later everything he does is managed by me from showers to eating. I've learned a lot during this period and admittedly I'm not the same person I was at the onset. I've learned to:

• Find the humor in situations... Things are easier when you can laugh about them. Don't take yourself too seriously... the worst times are when I just can't find the humor in the moment.
• Find things that make you happy and enjoy them like a pig in slop! It's amazing how wonderful that morning cup of tea is when you really give it some thought. Simple things are often the most enjoyable.
• Make sure to have time for yourself; I have a group of friends I have dinner with on a monthly basis.. It can be bumpy sometimes getting out the door, but I always manage to get there and never regret it. Additionally, Caitlin and I go to the movies each month while Patrick enjoys an evening with his old KPMG buddies Johannes and Vineet. We are huge fans of Studio Movie Grill in Rocklin.
• Find a support system filled with people that understand your situation and support you. I have a group of fellow caregivers that I see off and on at various functions and I communicate with them through our vast array of technology options. A big shout to my fellow caregivers: Melinda, Therese, Rebekah, Betty, Lachke, Jennifer, Ron, Steve and Dara to name a few. A special thanks to Cliff who cares for his wonderful wife, Susan and meets me every couple months for coffee at Starbucks. I truly value our friendship. If you'd like to read about the daily life of an ALS patient from the perspective of a patient, here is a link to Susan's blog, http://www.susanssteps.com/

  

  Susan, Cliff, Me and Patrick

• Keep a sense of self. Do stuff that is uniquely YOU, for me that means doing things that are not ALS related, not caregiver related and not because Patrick likes it (although, we've always liked quite a bit of the same things). Just stuff I like... I read Jack Reacher novels, decorate for the holidays (generally a little over the top) and walk Jake, the dog, each morning. This is me.. and it reminds me that I'm unique.
• I've learned how important the job of a caregiver is and having said that I owe a huge thank you to my mom! My mom took care of my dad while he struggled with health issues his last few years and for a number of years was a caregiver to my grandparents (her in-laws). I recognize the tremendous role you played mom and owe you a debt of gratitude! (I know my mom will read this blog because she's always been my biggest fan).

  

  Mom & Gt. Grandson Christian

• Additionally, on the thank you note. Sending hugs and thanks to Sean and Debbie Timmons who regularly visit, bring soda pop (as Shirley would say), take to dinner and spend time with Patrick's mother Shirley. Patrick and I have always felt tremendous gratitude that you are able to be there regularly when we cannot.
• Out of all the things I've learned, absolutely the most important is this, "tomorrow is promised to no one." - Live now, love now, forgive now!-

November is National Caregiver's Month so celebrate the caregiver in your life. We are great in numbers, so I suspect you know someone who regularly cares for a spouse, parent, child or friend. Send them a kind word, give them a hug and remind them that they are important!

I wish you an encumbered holiday season with family, friends and lots of joy!

Kindness

If you read the newspaper, I guess that's old school so let me restart, if you read the news on the Internet today you are probably feeling a bit discouraged by what seems to be our inability to "just get along." Not a day goes by where some horrific act takes place and we are left to ponder what the heck is going on with our society. Well, I don't have any answers for you, and I'm not writing this blog to discuss world politics, gun control or race relations. 

This is the world on a broader scale and throughout history it's been shocking to see man's inhumanity to man. But, when I look at human relationships on a personal level, I have to say the story is so different. Frankly, I'm amazed and touched by the amount of kindness that has been bestowed to Patrick and I since his diagnosis. People are often reaching out to touch base with us, seeing if there is anything we need or just letting us know that we are in their thoughts and prayers. For the many texts, messages, meals dropped off, and thoughtful gestures we are grateful. I've often thought that I should write a blog and thank all the wonderful people in our lives, but frankly I would likely forget someone and I don't want to do that.

Recently, we had a sprinkler pipe in our backyard spring a leak. A gentleman walking his dog stopped by the house to tell me that a large gush of water was coming out our front yard drain. I went outside to be met by a couple of the neighbors to see the "roaring river" that was  running across the sidewalk. There was some question as to whether it was coming from my backyard or my immediate neighbor's, Hector, so with Hector's help we proceeded to figure out who was responsible for the leak. By turning off the sprinkler valve (didn't know this existed) it became apparent that I was the lucky winner of the water leak. With current water issues, I knew that it had to be fixed quickly but I had absolutely no idea how to fix it or where to start. So, now it's out - I'm not really a Ms. Fix It type of person. Hector kindly offered to come over and find and fix the leak, which I immediately dismissed because.... well, I didn't want to trouble him. 

So, I set off to hire someone to fix my water leak problem. I started with the front yard landscaping company and unfortunately, the gentleman we worked with had just been hospitalized.  So after a day or two of trying to work with them I found out why they weren't responding to my requests. This was a couple days before the Walk to Defeat ALS and I was quickly swallowed up by the tasks at hand for our walk team. So, the sprinkler situation was put on a back burner. All throughout these days, Hector stopped by a number of times to see if he could work on the problem. Finally, I told Patrick, "I think I'm going to let Hector fix it." A few notes about Hector, he is a handy guy, he's always outside working on his yard, or fixing an automobile. So, while we were at the ALS Walk, Hector fixed our water leak in the backyard. Thank you, Hector.

So, I guess I'm still learning to accept the kindness of others. I must say that I firmly believe there is still much kindness in the world regardless of what we see in the news.

I'll leave you with the final outcome of our front yard Halloween decorations. The grandsons were a bit disappointed that I didn't use the blow-ups but they like the skeletons, "they are scary grandma." On a side note, Anthony, is having a Halloween/Birthday Party the first week of November at our house - so the skeletons will stay out longer than usual. We haven't named the skeletons yet, so if you have any ideas please let us know!

For years the car wash at Arden Way and Watt Avenue put "sayings" on their sign and I enjoyed reading them. Yes, I got my pearls of wisdom from a car wash... anyway, I don't go down that way much anymore and apparently the car wash has changed hands because last time I was there the sign read $21.99 for complete car wash service. But, not to worry, the Togo's Sandwich Shop on Foothills puts sayings up on a board behind the counter, the recent saying is "If you have the choice of being kind or being right, being kind is always right." - Anyway, I get my philosophical advice now at Togo's Sandwich Shop...

Happy Halloween!

Notes on Life #8

My last Notes on Life post was right after tax day. The irony is that I'm doing this blog, but I still have not filed our taxes... we are on extension. Does anyone know a good CPA? - Just kidding... True to all predictions this has been a horrible fire season and as I write this I look out to a smoke filled sky. I chased a few pot smokers out of the "wetlands" next to our house the other day.  Not because I cared so much about the pot smoking, but over the past 15 years I've witnessed a number of fires next to our house and right now the ability to evacuate and rebuild would be a bit overwhelming for us. Don't be confused by the term "wetlands," right now it's an open space with very dry brush...

The past six months have had there ups and downs. As always with the fall approaching, we are busy planning out our holiday decorations (Halloween, Thanksgiving and Christmas) and ALS Walk t-shirts... Here are some of the highlights:

The New Front Yard
The nicest change we've had over the past few months was relandscaping our front yard. We decided to do this because of the drought in California and the strict limitations on water use or basically, we were tired of looking at dead grass. After considering the possibilities and recognizing that the space could be much more usable, the change made sense. When the house was built there was a step from the front walk way to the porch and a step down to the porch in front of the window, essentially it was completely non-accessible to Patrick in his wheelchair. So, we worked with a landscape designer to create an environment that reflected us, allowed access for Patrick and made it enjoyable to spend time outside. 

Here are some before and after photos...

We never spent time in the front of the house until now (when it's not too hot or smoky) we sit on the porch, chat with folks walking by and listen to the water streaming from the fountain. It is a sanctuary.

The tricky part of the new front yard landscape is how to manage all our holiday blow-up decorations. Patrick and I are hard at work on this issue and we'll post pictures in the months to come so you can see the outcome. I was a bit surprised that I've had a number of neighbors ask me how our holiday decorations will work... And here I always thought they were just for my own entertainment.

To my ALS patient and caregiver friends, I've come realize that we spend quite a bit of energy in the early portion of the disease trying to scratch off items on a bucket list. I support this and we had a lot of fun travelling in the early stages of the disease. But, as time progresses, travelling becomes more challenging, so don't neglect focusing on what brings you happiness in your regular daily living. You will spend a lot of time at home, make it yours, redo the front yard, get a funny dog that makes you laugh or buy the biggest damn TV you can find, whatever brings you joy in the day. One of my caregiver buddies, replaced a small living room window with a large window so that his wife could view her garden throughout the room. It is truly lovely, both the window and her garden.

Alexa
A couple months back we received a surprise package from my sister Denise and her husband Mike. It contained the new Amazon Alexa (formerly, the Amazon Echo). Patrick and Caitlin immediately began setting up the device and purchasing the much needed accessories. Alexa is a voice activated device that allows you to turn on and off lights, manage your shopping list, access your calendar, play music and many other functions. It is also great fun for the grand kids because you can ask her a variety of things and she responds with funny replies. She even tells jokes.

As mentioned in my prior blog Patrick's speech is declining, so the voice activation doesn't always work for him. When we initially got the device he asked Alexa, "how do you connect your calendar" and she responded "I added canned ham to the shopping list." Which was sad, but you have to chuckle at these things. On a positive note, Patrick's computer voice Alexa understands better than anyone and he has the additional option of issuing commands through the computer. 

This is a new device and it seems to have really taken off with features being added on a weekly basis. The automated house that many of the more famous ALS patients have is really out of financial grasp for most of us, but Alexa is the start of something with great potential. A huge thanks to Denise and Mike, it really was a thoughtful gift.

Our Continued Search for the Past
We spend a considerable amount of time researching our family trees and corresponding with cousins (we've met some wonderful distant relatives by collaborating on family histories). I think there is a point in our lives where we wonder about the people that came before us; who they were, where they came from and what trials they endured. I believe our ancestors live in us both spiritually and through our DNA. It's amazing to think of all the pieces that had to fall into place to make us, us. 

So our search for roots continues... Some of our family lines we trace a great distance back and others we have dead ends. Throughout this journey we have found some interesting relatives: famous or infamous. The stories we've uncovered range from inspiring to tragic. Patrick is related to Mickey Mantle and my 10th great grandmother was Mary Bliss, the first woman in Massachusetts accused of witchcraft. 

One of Patrick's family lines goes all the way back to the Mayflower 1620. A gentleman by the name of Stephen Hopkins is Patrick's 10th Great Grandfather. Stephen was a colorful character and with his wife and children sailed on the Mayflower to America. This was not his first voyage and prior to the Plymouth Colony he was part of the Jamestown Colony. He was expected to help the colonists become established in the new world. Because of this direct lineage we are working on applying for membership in the Mayflower Society. This has been quite a tedious task with all direct relationships from Patrick to Stephen having to be proven. 

UC Merced

Looking at Colleges
We are touring and researching various college options for Caitlin. We visited the California Maritime Academy in Vallejo and UC Merced. Both of these colleges have solid mechanical engineering programs and we were impressed with both. Other colleges she is considering are UC Davis, University of Nevada, Reno, and San Francisco State University. She refuses to consider CSUS, which I think would be awesome, not sure her hesitation, both Patrick and I are alumni (that certainly can't have anything to do with it:))

She is in application phase and will start next fall at her new college. For me, considering her leaving is very bittersweet, but it is always the way, children must leave home.

Touring UC Merced

Walk to Defeat ALS, October 3rd at Raley Field
The Walk to Defeat ALS is Saturday, October 3rd and we are busy putting together t-shirts and logos! We hope you can join us for this event it's a great cause, nice people and a fun day! A huge thanks to all that have contributed to Team Timmons either by walking or donating. There are so many ALS families in need and the Association helps to provide them services on a "shoe string" budget. You can still join us, here is a link to our Team Walk page... Click Here

Odds and Ends
We were surprised when Corrinne told us that the boys (Anthony & Christian) had not seen Star Wars. One of my fondest memories with my dad was driving to Reno (2 hours from Susanville) to see Star Wars when it was released. We waited in a line that stretched at least two city blocks. So, I knew we had to share the Star Wars experience with the boys. We invited the boys over and surprised them by setting up the movie in the backyard. We just purchased a projector for our holiday decorations and Patrick thought how fun it would be to watch a movie under the stars. So we put up a "screen" on the backyard fence, rearranged the furniture and popped popcorn.

Every fall for the past 25 years, Patrick has participated in a Fantasy Football league with a group of past fellow Electronic Data Systems (EDS) employees. A couple years back one of the guys quit so I joined the league with my famous team, "The Ball Busters." Not to brag but last year The Ball Busters were undefeated (oh, wait that is bragging.) Well, the league started back this past week with a bang, yeah I lost my first game.

Hope all is well in your world. Here are a few other family pics from the past six months...

Comic Con

Farrell's Ice Cream Parlor

Christian's Theatre Play - he had speaking parts!

More pictures of the front yard landscaping...

The Little Goblin

Our Seating Spot

Love the Sound of Running Water

The Head

Reusing Our Old Fountain