Clinic

Patrick and Dr. Katz

I'm not looking forward to Patrick's clinic appointment on Friday. It's been heavy on my mind for the last month. I guess I should say that the stress is mine, not anything to do with the clinic. So, before I get ahead of myself, I should explain how medical care is provided to an ALS patient (at least the ones fortunate enough to live near an ALS Association Certified Treatment Center of Excellence). Patrick is a patient at the Forbes Norris ALS Certified Clinic. They are located in San Francisco but have a satellite clinic on a monthly basis in Sacramento.

The Forbes Norris MDA/ALS Research and Treatment Center is a multi-disciplinary clinic, sort of a one-stop shop for ALS patients. Typically, Patrick goes to clinic quarterly and the appointments last 2-3 hours depending on his needs. At his appointments we see a neurologist, RN, speech therapist, respiratory therapist, and physical therapist, to name a few. These professionals are experts in the field of ALS, so they are knowledgeable about new drugs, trials and medical equipment/software.

When we got the initial diagnosis, I think the hardest thing about going to the doctor was that there was no treatment plan to cure or control the disease. We are told in our society that when you have an illness you go to the doctor to get treated. Unfortunately, there is no "treatment" for ALS - no chemotherapy, no magical drugs and no surgery. So, you're thinking why go to clinic... Frankly, that's an easy one, they provide symptom management, information on studies, cutting edge drugs and medical equipment and have the latest information. Essentially they work to ensure the highest quality of life for ALS patients.

I've said it before and it really is true, the ALS world is like one big family. At clinic we generally know the other patients in the waiting room and there is collaboration between everyone in the halls, rooms etc. - very hard to explain but it has a life of its own. In addition to patients and medical staff, there are ALS Association staff and medical equipment specialists at clinic. The doctors, nurses and therapists that work in the field are also part of our ALS family. I really can't image what it would be like to spend your professional life working on a disease that has no cure, but most of the Forbes Norris staff have been doing this for years. These folks attend the ALS Walks, serve on the ALS Association boards and committees, and provide information at support groups, so we see them in a variety places not just during clinic appointments. They are a blessing to ALS patients and their families.

In April, we attended the ALS Association Symposium. This day long event highlighted research, issues and policy legislation related to ALS, it was attended by patients, caregivers and medical professionals alike. Some of the most renowned researchers across the country did presentations. It was an interesting day, this disease might not have a cure today, but there is hope for the future. 

Patrick and Bob

A typical day at clinic happens like this; our first meeting is with Bob Osborn, the registered nurse who manages our case. We know Bob well, he and Patrick served on the ALS Association Board together. Bob goes through the functional rating scale questions to track the disease progression, checks to see what concerns or issues we are facing, and makes certain that our needs are being met. He then determines which professionals we will see based on our current needs. At every appointment we see Bob and Dr. Jonathan Katz the neurologist, all the other staff are available if we have a need. We stay in the same room and the professional staff come in and out. I can not imagine what our life would be like if we had to make individual appointments for each professional. Frankly, it would be overwhelming and we wouldn't have the benefit of the expertise and experience of the clinic staff.

So, back to my original thought... I'm not really looking forward to Friday's appointment because we have issues to discuss. Sometimes when we attend clinic the progression of the disease is such that there really isn't much to talk about, but that's not this next appointment. There are three main issues to address - wheelchair controls, getting a feeding tube and jaw problems. 

We must begin the process of having Patrick's power chair controls changed from hand to head control. His hand really is struggling to control his chair, so we have a couple options - head control or attendant control. At this junction it is likely we will adopt both head and attendant so that he can control his chair and I can take over if necessary. Patrick tried out the head control features last month and they won't be easy. My hope is he doesn't run over the dog or straight into a wall.

We've been adapting to mobility issues for the past 3 1/2 years but the past 6 months we have been faced with challenges in the "bulbar" region, essentially speech, chewing and swallowing. We avoid some food items, cut smaller bites and he eats very slowly. But, there continues to be decline and ultimately he will no longer be able to eat in the "normal" fashion. For most ALS patients, initially a feeding tube is used to supplement eating, but over time it will replace normal eating. So we start the process of getting the surgery scheduled to install a feeding tube.

The final item of discussion is that Patrick did something to his jaw during one of his exaggerated yawns. Not really sure what he did, but it causes him a lot of discomfort and adds to his chewing difficulties. Hopefully they can guide us on what can be done to fix this and/or refer us to the appropriate person to see.

Adapting to change is what ALS is all about. I guess this time I'm a little tired. The mobility changes we've overcome are so challenging that I really thought that in comparison anything else would be simple. Nope, that's not the case - all ALS changes are difficult and adapting is not easy. I often hear a very high pitched voice in my head that says, "Oh silly girl..." she's quite patronizing. 

So, we head to clinic on Friday set with our three items of discussion. I wish I could say that maybe we'll get some good news, but the best news an ALS patient can receive is that there appears to be no change since last appointment. We know there have been changes, so that won't be true this time. On the positive side we will be able to see the neurologist, speech therapist, physical therapist and nurse all in one afternoon. They will understand the issues, provide guidance and get our needs met - this I'm confident of.

But hey, on a positive note, Comic Con is this weekend and we've got tickets for Sunday - so, we'll distract ourselves with a little bit of Science Fiction after the appointment. To my SciFi friends, "Live Long and Prosper" or if you prefer "May the Force be With you." Here are some pictures from last year's Comic Con...

Us at Comic Con - 2015

Kevin Conroy, "The Voice of Batman" and Caitlin

Caitlin, Batman and Patrick

Observations From the Porch

Our days are slower, more routine. There are certainly moments of boredom but we also find

Us on the Porch - compliments of Caitlin

simple pleasures during the day. Most days around lunch time and early afternoon we spend time on our front porch. Last year when we had the landscaping redone we selected plants that would encourage the bees, hummingbirds and butterflies. So, we always have good company on the porch. It's peaceful observing the wildlife, listening to the fountain and merely being present. 

Jake, the dog, joins us and generally is waiting anxiously at the door ready to head out long before us. He lays on Patrick's lap and naps most of the time. His protagonist is a grey cat that lives somewhere in our neighborhood but likes to frequent the wetland across from our house. This is one of the few things that really gets him excited, except perhaps when Caitlin drives up returning from school.

Our house sits next to a bike trail and open space between houses. The bike trail runs from local high school all the way past the middle school. So it's a major through way for students going to and from school. Most of the time we are not noticed by the kids heading home, although every now and then one will smile and wave to us. 

My porch buddies. This is red alert for Jake!

Across the street we can view the beginning of the bike trail from Woodcreek Oaks to our street. Each day there are two friends that walk home from school on this path. Patrick noticed them first and pointed them out to me. They walk back and forth on this stretch of trail talking excitedly with lots of hand gestures and enthusiasm that we can view even from where we sit. I don't think they know we are there, frankly they are too engaged in their own conversation. When they finally head home, the boys separate with each going the opposite direction, however, right before the other is out of sight, the boys both turn one last time and wave to each other. It's such a wonderful testament to friendship and we are the beneficiaries each day of witnessing this exchange.

We have guests on the porch occasionally, Corrinne comes by to visit or Caitlin takes photos for her college course. In the fall, because we did more hanging out at night, we had neighbors that stopped by to say hello. Here are some photos from the porch... if you look closely, you'll see the two friends walking the trail. 

View from our porch...

Jake - in his usual state...

Hummingbird

Hope you have time to stop and smell the roses... they are well worth the time.

Machines, Equipment and Electricity

Never in my life have I been so dependent on modern technologies, equipment and machines. Each morning Patrick is removed from an adjustable bed, to an electric Hoyer lift and deposited into his power chair. After which he heads downstairs in his elevator (lift) to the bottom floor. If we head out during the day, we use the disability van which kneels and has a ramp to allow him to get inside with his chair.  We are blessed to have all this wonderful equipment, the other side however is that they can and do break down and frankly Sh@# Happens.

The Van

A few months back we got our first experience with the van “breaking down.” We had taken our grandson out to get him a Halloween costume. After getting just the right costume, we loaded into the van. The van kneeled and the ramp lowered to the ground as always. After getting settled in, I pushed the close door button and found that the kneeling feature would not release. We tried several times and looked through the owner’s manual for any insight into the problem. So, we decided to try the emergency feature that would release the van back into a normal position. The emergency feature however, was not responding. Yes, we were all very stressed out in this moment.

At this point, in my mind I’m thinking – what do I do if I can’t get this working? In a normal world, we’d call AAA and get roadside assistance. But, alas I don’t live in a “normal” world, I live in a world that is too often dictated by an awful disease. AAA really wasn’t an option, so I contacted my son-in-law Justin, because frankly he’s a handy guy. I thought perhaps I didn’t have the strength to pull the emergency cord tightly enough and at a minimum we could get Anthony back home. My belief that Justin is a handy guy proved correct, he removed the seat in the back and traced the emergency cord to its source, removed all the casing on top and found that someone had disconnected the cord. So, he reconnected it and got it working again. This was a temporary fix but it got us home that night.

Later that week we took the van in to be fixed which unfortunately, the only mechanics for these devices are all about 30 minutes away. The actuator had to be replaced, an expensive repair indeed.

Recently, friends of ours, Bob and Therese, had a similar van breaking down experience. They got Bob loaded up in the van only to realize that the van battery had died. So, Bob was “stuck” in the van. They took the van over to their local Pep Boys to have the battery replaced and Bob stayed in the van while the work was completed. This image of Bob in the van during the repair, is amusing to me, I’m only bummed Therese didn’t get a photo. The life of an ALS patient and their caregiver is often so strange you have to laugh. Here is a photo of a bunch of us at a local ALS conference (Shelly, writes a blog chronicling her life with ALS, you can check it out at shellyhoover.wordpress.com) Bob said I could include the picture but needed to photo shop in large muscles for him… hmm…

BR: Therese, Shelly, Heinz, Betty FR: Bob, Patrick & Me

Electricity and Breaker Boxes

We use a lot of electricity, in fact, according to the monthly environmental statement from the City of Roseville our home is in the top 10% of users. I’m not proud of this fact but I’m not surprised either. On the flip side we are very low water users – our drought tolerant landscape probably has a lot to do with that. The truth is with a house full of machines and most with battery back-ups there is a reason for our high use. We are absolutely electricity dependent and if the zombie apocalypse hits anytime soon, we are not going to make it.

Each night I take a walk through the house and make sure everything is plugged in. I remember a time when all I worried about was my phone being charged but now that list is a bit longer. The list includes a speech generating device (Tobii), Microsoft Surface computer, gyro mouse, electric lift battery, power chair, a breathing machine, and of course phones. It really messes things up when I forget to plug something in, so this is an important process.

Recently, after I had just got Patrick into bed and was plugging everything in. I notice the backup lights for the power chair went out. I looked around our bedroom and realized that the electricity was out. Unfortunately, it was about at this same time that Patrick started coughing and wanted the bed set up higher. Which, because the electricity was out I could not do. This was a very stressful moment and my first thought was because of all the equipment in the bedroom, I must have popped a GFI switch. To which, I frantically ran throughout the house pushing all the different GFI switches trying to get the power back on. Fortunately, because I’ve managed Christmas lighting I am aware of all the GFI switches and where they are located. However, none of the GFI switches made a difference in solving the problem.

At this point Patrick’s coughing had subsided and he remembered reading the “Neighborhood page” that kids were going through neighborhoods and switching off breakers as a prank. I must say honestly that I was not in a good mood, so I grabbed a flashlight (it was around midnight) and headed outside to the breaker box. I immediately noticed that the panel door was opened and that someone had indeed popped one breaker – fatefully, the one that went to our bedroom and bathroom. Our house being located next to an open space area and bike trail has always been a target for pranks. In my anger I flew down the bike trail with my flashlight determined to smack upside the head anyone I found nearby. Probably lucky for me whoever did the deed was long since gone.

This incident made me realize how truly dependent we are on electricity. In addition to all the items that plug in, we have respiratory equipment, a lift, adjustable bed and the list goes on. Fortunately the really important stuff has battery back-ups but I’d rather not test the battery life on any of them. Now our breaker box has a pad lock, hopefully this will keep the pranksters away.

Ms. Fix-It and the Power Chair

I’ve said it before and it’s worthy of a reminder, I’m really not a fix-it kind of person. Honestly, I just like things to work. I have to fight my natural instinct to “find someone else” to manage whatever problem is going on. The power chair is critical to Patrick’s everyday life. Frankly, aside from showers and sleeping he spends his entire time in his chair. The chair has proven to be very reliable (knock on wood) but it is a high use item so there are things to be managed. Recently, the controller extension on his arm became quite loose. I went through the “goody bag” they give you with the chair with all kinds of screwdrivers, adjusters etc. but couldn’t find a wrench that work for the connection that appeared to be the problem. It was stuck between the arm rest and connecting hinge. I contacted the chair supplier and the following day they sent out a repair person to fix the problem. She took part of the arm off, to get to gain access to the screw, fixed it and put it back together. She proceeded to tell me how I can do this myself, and showed me the various parts that I would need to loosen or remove. This was not my best moment, because primarily I kept thinking nope I’ll call your office again.

I worked through my feeling of frustration that another uncomfortable responsibility had been delegated to me. Realizing if necessary I could fix this issue if it happened again and although I’m not Ms. Fix in a pinch I generally can rise to the occasion.

We are fortunate to have all the technological advantages, machines and equipment available at this time. I’m also acutely aware of the cost prohibitive factors for some ALS families to obtain some of these items. Dependency on machines is scary but the thought of not having these items is much worse so we’ll manage the pranksters, breakdowns and struggles with fixing things.

Hope all is well with you and yours!

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!