ALS Hospice Survey - Calling All ALS Patients and Caregivers

I continue to work on the ALS/Hospice Task Force. The task force is a combined effort of the ALS Association (Greater Sacramento and Golden West Chapters) and California Hospice and Palliative Care Association. We are working to create best practices and education for hospice staff providing care to ALS patients. The task force is working to assure ALS patients have the appropriate information before entering and upon receiving hospice care. These best practices will help hospice team members understand the challenges of ALS and better meet the needs of ALS patients and their families.

The task force created a survey to gather information from pALS and primary caregivers past or present. Even if you haven't used hospice, please complete the survey as one of the task force objectives is to better understand the expectations and perceptions of hospice before it is utilized by pALS. Additionally, I encourage both the pALS and their primary caregiver to complete the survey as sometimes their perspectives are different. 

Here is the link to the survey - 

ALS Hospice Survey

I fully understand the demands on your time and appreciate your completion of the survey. Thanks in advance!

Please Understand Me

Enjoying SFSU Campus

There is a book on our shelf called "Please Understand Me" its about our character and personality traits. They give you a survey to determine your traits and then discuss how these affect the way you see the world and interact with others. I haven't taken it in years, but I think I was an "ENFP". I remember Patrick's survey being almost the opposite of mine. Truth is, we communicate and see the world differently. I think it's been a strength and a weakness in our marriage, as well as on this ALS journey. Communication in ALS over time has become one of our greatest challenges. In every marriage, being heard and understood is very important. Couples go to counseling to learn to be better listeners and speakers. With ALS you must add on the problems of simply being heard, having words translated correctly and recognizing emotion and sarcasm with no way to recognize inflection. When you add these in, there are always misunderstandings.

Patrick's ability to communicate verbally is extremely limited. I understand him at best about 5% of the time. And this 5% likely has more to do with me anticipating his needs versus really understanding what he's saying. This 5% is hindered by a ventilation mask that he wears throughout most of the day. I suspect every ALS patient/caregiver creates some of their own communication systems. We use a system that was presented to us by our speech therapist, Amy Roman at Forbes Norris ALS Clinic. The system is designed to work with a card you hold up in front of the patient and they select letters through eye movements. Letters are grouped by the vowels A-E-I-O-U. We don't use the card, but we do use the system of A-E-I-O-U - here is a video showing the use of the card (go down on the page to the video entitled, 

AEeyeOU :  A Very Easy Low Tech Communication Method for People with only Eye Movement

When Patrick doesn't have access to his Tobii communication device this is the best we have. As a caregiver, it forces you to really think about what you are translating, because it's done letter by letter. Frankly, it's hard to remember the first five letters when you're on the sixth and pen and paper is not always readily around. You have to focus on identifying each letter and if I'm in the middle of something I have to stop and devote all my attention to the translation. If I have a headache or I'm tired, this is almost impossible without pen and paper. 

Sleepy drugs and the A-E-I-O-U system really don't work well together. Patrick takes Ambien to help sleep each night. It's an effective drug, I'll tell you that. Each night we watch a bit of the Tonight Show with Jimmy Fallon right before bed. He was quite frustrated one night and was trying hard to tell me something. I was tired and it was not a good moment for me to be translating but, he was so insistent that I kept trying to decipher what he was trying to tell me. I realized, after about 10 minutes, that he wanted to see Barry Manilow who was the guest coming on to the Tonight Show. So, I left the TV on for him to watch. I didn't realize that he was such a Barry fan - news to me. The next morning I turned on Barry Manilow music and said, "hey you'll enjoy this." He gave me the oddest look. After talking with him later, he had no recollection of our "stressed out" A-E-I-O-U discussion. Yep, it was the Ambien. I've read now that Ambien makes you do all kinds of things and it is recommended that you don't take it alone. Apparently, it makes you a Barry Manilow fan (for the record, I was already a fan of Barry's).

At an ALS support group very early on in Patrick's diagnosis, there was a caregiver who abruptly stated that she now was the driver and her husband had become a backseat driver, and she wished he would just "shut up." It was a tense moment in group and another caregiver commented "be careful what you wish for." Now before you judge the first caregiver too harshly, I will tell you I've had the feelings of both these caregivers. Before ALS, Patrick was always the driver in our family. I was perfectly content enjoying the scenery, singing songs on the radio and managing the ins and outs of stuff in the car. I'm now the driver and this was a difficult transition for him and me. Yes, when this transition occurred he was a backseat driver (still is, sometimes) and it did annoy me. But as with all things we adjust.

At the mall near SFSU

Patrick hasn't driven in about four years, when the first area you lose is your hands your ability to drive ceases very quickly. His speech was not impaired at this point so he could readily give me his opinion on the route I took, the lane I chose and the speed at which I was going. For me, it was pretty annoying and stressful driving with him. For him, it was a tremendous loss of control and independence. The conflicts in ALS between caregiver and patient are not always resolvable, all we can do is to try to recognize the other person's perspective which is not often easy in the moment. 

So, he's had to mellow out and I've had to manage the stress of always driving. We talk very little, it just isn't possible. When necessary I will translate through A-E-I-O-U but it's very difficult to concentrate on driving and translate at the same time. Recently, we've gone to and from San Francisco a couple times to get Caitlin set up for SFSU in the fall. Driving in the city is stressful for me and I don't look forward to it. On the last trip, I spent time translating for him while driving, only for Patrick to tell me "I'm right." He was referring to the lane change he suggested and I wasn't sure about so I didn't follow his direction. In the moment, I was not amused. No, this was not our finest hour.

As I've discussed in prior blogs, Patrick uses a speech generating device created by Tobii Dynavox. This device allows him to communicate by eye tracking. Modern technology is pretty cool. But just like the A-E-I-O-U system, it has it's limitations and challenges. It's greatest challenge is the practicality of using the device - it takes a bit to set it up so you want to do it when he's settled in. It's not practical to set it up during his morning or evening routines of showering, dressing, bathroom etc. It sits in front of his face so we don't keep it up when he's watching television. Really, the greatest time on the device is in the afternoon and he stays on it for about five to six hours a day. The Tobii doesn't work well or really not at all outside. The sun light reflection interferes with eye gazing. I've had discussions with the Tobii representatives and this appears to be a known difficulty. The Tobii is like any other computer - it has a battery life, it has to be updated, it locks up sometimes and on occasion it just doesn't want to work properly... So, it's an amazing tool, but not a perfect solution. 

Yes, sometimes Jake gets in on the act.

The ability to tell sarcasm or joking can be challenging - it's much like when you get a text and you are trying to tell if the person was serious or being funny. Patrick's good friend Johannes - where the J sounds like a "yo" comes out as a "jo" on the Tobii. It's kind of funny - Johannes, if you're reading this, ask Patrick to say your name.  

As the disease continues to progress, our communication becomes more and more basic. At night, to understand what he needs (he rolls over a couple times each night) - I simply say, "if you want "________" make a noise. That is probably our simplest form of communication, not pretty, but effective.  If I'm being honest, the prospect of future communications does make me a bit anxious. One of his fears is being "locked in" - which is when the ALS patient can no longer move, including the eyes so no form of communication is available. Give that a little thought - it's a scary notation. 

When we go out, we don't often use the Tobii - it's not practical. We went to the movies a couple weeks back and got home late and settled into our evening routine. Because of this Patrick didn't wind up being on the Tobii for almost 48 hours. When he did get on the Tobii, the first thing he said was, "do you know what it's like to not be able to communicate anything significant for 48 hours?" My initial thought was to be defensive - I took it as he was complaining. I'm really no saint, but once I took a step back, I said to him, "I have no idea what that's like." I've thought about this comment since then and really I can't imagine - can you? Communication is critical to the self, it gets your needs met, allows you share your feelings and thoughts and keeps you connected to the world. We adapt to the challenges as best we can but it's not the same - it is truly one of the greatest of losses for an ALS patient and their families. 

I hope you are having a day filled with great people and good conversation. Today is a nice day, the dog is sleeping and we are enjoying the sunshine. Hope all is well with you and yours.

PSA: Handicap Spots

About a month ago Patrick, Caitlin and I headed to San Francisco to take a tour of SFSU

SFSU - Patrick & Caitlin

(Caitlin is attending SFSU in the fall). Taking day trips even when they are a few hours away, requires planning. There is equipment to prepare and pack, timing of food and potty breaks and extra time to assure parking and getting through the campus using the disability access. You can't plan for everything, but I do my best to be prepared and limit the amount of surprises - with ALS, surprises are not usually a good thing.

SFSU is a beautiful campus and it was an amazing blue sky day. The tour was pretty uneventful except that I was not feeling well (menopause, need I say more). After the tour we headed home and on the way home we made a restroom stop.

Just a side item, when we need to use a public restroom it's a bit of a scavenger hunt. The first thing we look for is a store or restaurant that we know or suspect has a private bathroom. We go in together and it's so much easier to use a private bathroom that locks. We have, in a pinch, used the women's restroom but it's not preferred. The second item is to find a van handicap spot near the restroom. Fulfilling both these requirements is not as easy as it sounds. 

On this day we pulled into a strip mall and found a sandwich shop we knew to have private restrooms and we were fortunate enough to quickly find a van handicap spot. Because I wasn't feeling well, I said to Patrick is it ok if I use the restroom first, than I'll come get you. He said fine, no problem. So, I jumped out of the van and hurried in to use the restroom. When I returned there was a car double parked behind our van and as I approached an angry lady (I use the term "lady" loosely) yelled to me from her car window.. here was our exchange

"Did you know that was a handicap spot?" Lady from her car window

"Yes, we have a handicap placard."

"I don't see it." That's when I realized I forgot to put the placard in the window.

"I forgot to put it out, but we have one."

"Are you leaving?"

"No, my husband still needs to use the restroom."

"You don't look very handicap to me." she responds

"My husband is in a wheelchair." At this point, I'm starting to twitch, it's been a long day and frankly I'm not in the mood.

She finally leaves in a huff and I take Patrick inside to use the restroom. When I got him inside I looked at him and said "I understand that she's upset because she felt we shouldn't be using the handicap spot and I forgot to put up the handicap placard.  But I think I'd like to strangle her." - Yes, it had been a really long day for me. It's probably better that I didn't know it at the time, but the lady had actually gone over to Patrick's window and tapped on it while I was in the restroom. You would think after seeing him she would have moved on, but apparently not. Patrick, of course, couldn't respond to her tapping and Caitlin said she was so shocked she didn't know what to say. Like I said, better off I didn't know this at the time. Just for the record, if I'm not with Patrick or he doesn't need to use the restroom I always use a regular parking spot.

I've thought about this incident off and on for the past month so I know that it affected me. There is nothing a group of ALS patients and caregivers complain about more than disability parking. Because of this experience and others, I have a list of suggestions for disability parkers and non-disability parkers:

For my fellow disabled placard parkers:

1. We are all in this world together, just trying to get by. You don't know my story and I don't know yours, when you see someone using the handicap spot without a placard. Let's start with they probably forgot to put it up, not immediately determine they are evil handicap spot stealers.
2. There is a difference between regular handicap spots and van handicap spots. The van spots have an extended side so that a ramp can come down for wheelchair access. The only spots Patrick and I can use are van spots. So, if you don't need a van spot and there are regular handicap spots available - please leave the van spot for someone else. Van spots are usually clearly labelled "van" right under the handicap sign.
3. When you park next to a van spot be careful not to park over the extended side area. I can't tell you how many times this has happened and if it's too far into this area, the van spot becomes unusable for us.
4. If you have a disabled placard for someone in your family, but they are not with you. Please don't use a handicap spot, there really are people who need them. 

For my fellow drivers without a placard:

1. Firstly, and I say this with love, count your blessings. Since taking this ALS journey I will tell you that IT IS more difficult and challenging to be out and about with a disabled person. Please respect the handicap spots they are not temporary parking and/or a pickup location.
2. Don't park over the line or leave shopping carts in a handicap spot. We have friends that are disabled drivers in their case, if there is a cart in the handicap spot they are not able to move it.

Just a couple thoughts:

There was a news article about disability placards in California. The statistic is that 1 in 8 drivers now have a handicap placard. Nope, I'm not kidding. Here is the news cast discussing the issue: News Ten: One Out of Every 8. I find it hard to believe that 1 out of every 8 drivers requires a disability placard. I'm not sure how to fix this, but at least I know why its often so difficult to find a handicap spot.

I know that there are disabilities that are not as apparent as others, so not "looking" disabled does not necessarily mean that a person is not disabled. However, we've all had the occasion of someone jumping out of a car with a handicap placard looking completely healthy. I'll just say this, if you don't need a placard, for goodness sake be grateful and enjoy the extra steps, it's good for you.

On a final note, as I said before we are all in this world together and yelling at someone when you really don't know what is going on is such negative energy. Remember "The Walk a Mile in His Moccasins Poem" - the last stanza of the poem goes like this.

Remember to walk a mile in his moccasins

And remember the lessons of humanity taught to you by your elders.

We will be known forever by the tracks we leave

In other people's lives, our kindnesses and generosity.

Thanks for allowing me to rant... I hope this finds you without a disability placard and enjoying a great Father's Day. Some recent photos:

Family Visit

Christian Sharing his Mayflower Book Report

Story time

A nice day before the heat

How is Patrick Doing? #10 - Working Through the Many Changes

Anthony and Patrick

I've been asked, "why do you write a blog, its so personal." My experience is that in the absence of information, people make things up. So, I continue to share this blog, to make sure we tell our own story - including all the awkward, uncomfortable and difficult stuff. My hope is that our story will help bring understanding to an awful disease and how families manage through all the changes.

Throughout this journey both Patrick and I run through the five stages of grief, in no particular order. This includes denial, which is a comforting stage of grief and I believe gets a bad rap. Denial is simply a coping mechanism that allows the mind to process things more slowly and when ready. The tough part of writing "How is Patrick Doing?" blogs is that I must shed what comfortable denial blanket I'm wrapped up in and assess how the disease has progressed. 

Recently, I completed forms to continue Patrick's long term disability claim. Yes, it seems a bit silly to prove his medical condition at this stage, but they require it annually. This year the ALS Clinic completed their section and sent it back to us for submission. On the form, under "Nature of Medical Impairment, i.e. loss of function" the doctor wrote "quadriplegia, chronic respiratory failure, dependent for all ADLs" (activities of daily living). I read this a few times and found myself pondering all that it means. When you are involved with daily living it's hard sometimes to step back and consider the disease progression.

Whether I live in denial or not, the ALS continues to move forward and force adjustments to our regular routine. So, I continue this blog with as little denial as possible...

Mobility
Patrick has lost most mobility including his hands, legs and arms. When he is getting dressed his arms often fall to his sides like dead weight. His legs have some movement which allows him to lift a bit and help when rolling over in bed, but not much else.

One issue that happens with a lack of mobility is a concern for bedsores and pressure points. Patrick has lost much of his muscle tone, he has bony parts on his back that can be very uncomfortable. We had the back pad changed out for one that is more comfortable and allows the back to "breath." Additionally, they added "wings" to the sides of the chair to keep Patrick from falling out - they keep him propped up.

His neck muscles have weakened making the head array controls for his chair too difficult. This leaves him dependent on others to move his chair.  A tough change, first he had to give up driving a car and now he's lost control over his power chair. This created a problem in using the lift in our house - how do I manage the power chair by myself. We worked with the power chair company and they were able to add a controller to the front and back making it available to me both on and off the lift.

Over the past four years, Patrick has gone from cane, to walker, to scooter, to power chair, truly a reflection of the disease progression. So much of the equipment we use is temporary which can be expensive and creates a constant need for training and adjustment. 

Feeding Tube, Eating and Medications
Patrick receives his nutrition, medication and water through a feeding tube. He can still manage some foods by mouth, but it is quite limited and primarily he only eats for enjoyment. Ice cream is a favorite!

We've learned how to use the feeding tube, including taking medications; medications must be completely crushed, broken open or liquid to put through the tube. Patrick calls all the syringes, supplies and equipment my chemistry lab and it sort of has that feel. You learn as you go; from managing the tube under clothing, dressing the wound, flushing the tube and avoiding stomach acid that often comes back up. Just like everything else we adjust and create our own processes. There are things that you discover and routines you create that make life much easier. 

Respiratory Challenges
The biggest changes we've seen over the past five months is his respiratory decline. It seems like a rapid decline, but I'm not completely sure that is true. The ALS Clinic has been unable to get accurate respiratory readings in over two years because of his severe bulbar decline. It's likely that his respiratory has been declining for the last few years, but the only test is in observation. Patrick is using the respiratory equipment more often throughout the day and when he's not using it you can hear how his breathing is quite shallow. Over time ALS patients lose their ability to breath deeply enough to exhale the CO2 and require the assistance of respiratory equipment.

Jake still finds a way!

Over the past few months, the respiratory therapist has come over to adjust settings, provide new supplies and equipment, and assure that everything is working well for Patrick. 

Patrick has some of the classic symptoms of respiratory decline; the increased use of respiratory equipment, headaches and difficulty lying flat. These symptoms have become more apparent over the past few months.

Other Stuff: Acid Tears, Spasticity, and Getting Comfortable
One strange symptom of ALS is acid tears, which burn and are quite painful. Recently, they have become more prevalent and seem very uncomfortable. So, we do quite a bit of eye wiping. 

Throughout this journey Patrick has suffered spasticity. Spasticity is the stiffness' or 'tightness' in his already weakened muscles. This continues to cause him discomfort and amongst other things is triggered by coughing, which unfortunately has increased. Recently, we went to the movies and Patrick was coughing and struggling with spasticity. Because there was a counter in front of us, he banged his leg repeatedly against it. His leg was bleeding and pretty sore by the end of the movie.  

With most of his muscles compromised, getting comfortable is a challenge. When you settle into a chair or bed you do a lot of fidgeting. With Patrick unable to fidget and move around he has a hard time getting comfortable. A considerable time is spent helping him adjust his arms & hands, pushing on his shoulder because of the way he leans and adjusting the chair back and forth. It's also critical to get him from the Hoyer lift to the chair making sure that he is straight in the middle of the chair. It can be quite frustrating at times, but if he is placed incorrectly he will be uncomfortable for the rest of the day.

He continues to deal with constipation issues. One of the greatest difficulties with not walking or moving around is that the body struggles with its bowels. Body movement is what keeps things working in the digestive track and without this movement things don't quite work right. We continue to try to find balance in his diet and supplements to lessen this problem.

With the increase of water in his diet, it also increases the need to urinate. This can be difficult when we are outside the house for several hours. We spent a "lovely" day watching Men's Liberty videos on external male catheters. You know I love movies:). Daringly, we went to the movies for the first time with the Trilogy (respiratory equipment) and wearing a catheter. Honestly, I was worried, but it all seemed to go without incident.

And Life Continues...
Life continues through all things... good and bad. Here are some recent photos...

Caitlin's Graduation from Sierra College

The Ewoks, Chewbacca & Yoda at my 50th!

Family at my 50th Birthday

Us at my 50th Birthday!

Wishing you a happy summer!

A Lot of Stuff

Patrick and Jake

J.T., a friend and ALS patient, regularly uses the hash tag - #attacklifesmiling, he's a positive guy so it fits perfectly for him. For me I think ALS stands for A Lot of Stuff, because my house and life is bursting with machines, equipment, and supplies. I've never been a stuff fan it has always created a bit of anxiety for me. In fact, I've been known to go out of my way to drop off things that were left at my house. But here I am an ALS caregiver with lots of stuff to take care of, find space for and often learn how to use.

For years, I volunteered as Service Unit Manager for Girl Scouts in Roseville. We had around 85 troops, about 150 leaders and over 800 girl scouts. I worked with a group of women that were a lot of fun and made it all run. Girl Scout leaders and volunteers acquire A LOT of stuff. This was probably one of my greatest anxieties when managing leaders and the service unit. For those I worked with, they all knew that if an item was going to be purchased one of my first questions would be "who is storing it?" Nothing annoyed me more than to come home and find boxes and bags of troop equipment, craft supplies etc. sitting on my porch. It happened every now and again and it made me crazy. 

Fast forward to now and like it or not I live in a world full of ALS stuff. Just for the "fun of it" I put together a list of the items that came quickly to mind...

shower chair
ramps
blue booties
formula - cases
syringes
cough assist machine
cough assist machine supplies: mask, cushions, hose, filter
trilogy ventilator 
trilogy ventilator supplies: mask, cushion, hoses, filters, distilled water, canister
suction machine
suction machine supplies: tubes, sucky thing, filters, canister
speech generating device, travel bag, and bar attachment
gyro mouse, Microsoft surface and big clicker
medicine - prescribed and non-prescribed, liquid, powder, spray and pill form
pill grinder (2)
pill cutter
pill boxes
gauze pads, medical tape, saline solution
hoyer lifts (2) - one electric, one manual (back-up)
slings (2)
urinals
power wheelchair
extra seat cushion for chair
leftover parts from power chair adaption
manual wheelchair (backup)
walker
foaming liquid soap - non-fragrant
neck brace
neck pillow
blanket rack for over the feet
lift
van
towels, pads, blankets, pillows
and straws, lots of straws

It's like that old wedding rhyme:

Something Old - Van (we opted for purchasing a used van)
Something New - Supplies for the machines, general supplies and feeding tube items
Something Borrowed - Hoyer lifts, walker, shower chair, manual wheelchair (all borrowed from the Greater Sacramento ALS Association)
Something Blue - Patrick's highly valued "blue pillow booties." 

Jake admiring the blue slipper booties

Patrick's blue booties are big blue pillow slippers he wears when he goes to sleep - these help combat bedsores which often occur on the heals of the feet. He says these slippers are awesome.

As you can see from my list - even the ALS stuff has stuff. I coordinate all the supplies for the various machines, order prescriptions, make sure everything stays in working order, provide regular equipment cleanings and take out/put in the items from the ALS Association loan closet. I feel a bit like Radar on MASH - remember him, he was always doing inventory and completed all the necessary paperwork to get the supplies the unit needed. 

PEG Surgery Anyone?

Recently I was given a surgery kit for a PEG tube. I only needed the head of the tube, but the nurse said "here you can have the whole kit." It sits in my kitchen, I've not been able to throw it out - what I'm going to do with it is a mystery to me. I was thinking about letting other ALS caregivers know that I was trying my hand at PEG surgery, in case there is a need. 

I try to ignore the additional stuff that is accumulating and most of the time it works. Lately though, I feel a bit overwhelmed by the amount of stuff and I'm struggling to find new places to store things or at least hide them on the occasion we have company.

I saw on the news recently that thieves are stealing packages off front porches. I kind of chuckled at what a surprise a thief would have if they stole a box from our porch, perhaps a 6 foot tube or replacement mask. We get plenty of packages so the thief would think he'd hit the jackpot. The respiratory company sends supplies in separate boxes so instead of one box, we get six. I'm sure they have their reasons, but it seems a bit of a waste.

I'm not 100% sure where I'm going with this blog - there is no real point. The stuff is here to stay and likely there is more to come. Of course I'm grateful for the stuff and life would be difficult without it. But, I think I'm reaching my stuff limit. 

Gleason Movie

During my "free time" I tend to avoid ALS websites, ALS organization Face book pages and ALS movies. I do keep up with a couple ALS blogs, but not many. Shelly, an ALS patient, made the comment when I asked her how she was doing one day, "I'm living the dream, baby." This cracked me up. So, I guess the primary reason for avoiding all these "ALS things" is just this - I see ALS up close and personal every day, and frankly it's not pretty. There are three ALS movies, that I know of, that came out in the last couple of years; "The Theory of Everything," "You're Not You," and "Gleason." 

Nope, nada, no thanks, I'll take a "hard pass" on these films. When asked, I always say, "Nope, I'm living the dream..." I am however, a movie lover, we go out to the movies at least twice a month. Just this past month I've seen Lego Batman, Split and John Wick, Chapter 2 - just fun movies, a diversion from daily life. Before I press on, I will say that I've heard nothing but good things about each of these three ALS movies, so I suspect they all have merit.

Patrick didn't show any interest in the "The Theory of Everything" or "You're Not You," but he did want to see "Gleason." Steve Gleason is a well-known ALS advocate in our world. He championed a bill that allows ALS patients access to Speech Generating Devices through Medicare - called the Gleason Act. The bill was passed by Congress unanimously and signed by the President in July, 2015. How many bills do you hear passing unanimously in today's political climate. He heads up his own foundation and generates funding for a number of ALS issues - Team Gleason. He is also an ALS patient and former New Orleans Saints' player. His contribution to the ALS community is undeniable, however, I just wasn't interested in the film. I saw part of an ESPN special, A Football Life, that he did early in his ALS diagnosis where he "climbs" with another patient, Machu Picchu and frankly I just found it a bit ridiculous. But, Patrick really wanted to see "Gleason" and its available through Amazon, so I told him I'd be around during the movie, but I got things to do. Nope, nada, no thank you... 

As you can imagine, I got drawn into the film, frankly not because of Steve Gleason, although, I did like him, but more because of his wife, Michel. Her feelings, comments and sadness were so incredibly real. I got her. She makes the statement in the film that "ALS is a complete mind fuck." I had to stop the film, look at Patrick and say - yep, that is exactly what ALS is! Frankly that's the best definition of ALS I've heard yet. At one point in this journey I had someone tell me ALS is a blessing... nope, not a blessing, but "complete mind fuck" yep, I'd agree with that... 

On a side note, I must say that the generational story with Steve and his father and then Steve and his son is such a human story. How we grapple with mortality, religion and beliefs, what we want for our children and how we learn to accept our differences. This is beautifully done in the movie.

"Gleason" is not sugar coated and is a documentary so you're watching, real people, with real reactions and feelings. I worried that there would be fanfare at the end, that all was great and wonderful - but there wasn't, nope it was real. There is even a scene with Steve and Michel in the bathroom. Constipation, urgency and diarrhea are realities of ALS - sitting in a chair for about 12 hours a day is not good for the bowels. We've had our share of problems - it's not fun for him and it's not fun for me. Rushing to the bathroom in an "emergency" is not possible with ALS - nothing can be quick. In our house that means getting Patrick onto the lift, sending him upstairs, getting him off the lift, transferring him with the hoyer from his wheelchair to the shower chair and into the bathroom. If you need to run to the bathroom - you can forget it.

I think probably, the most profound discussion for me with Michel was her description of herself before Steve's diagnosis. She talks about how she "use to be" much more funny and happy. She didn't think that person would return. I've had the same experience, my former self was a bit less "heavy" and certainly much happier. Sadly, I don't think you get to go back. Bruce Hornsby, wrote a song (made popular by Don Henley) called "End of the Innocence":

But this is the end
This is the end of the innocence
Who knows how long this will last
Now we've come so far, so fast

But, somewhere back there in the dust
That same small town in each of us
I need to remember this
So baby give me just one kiss

I suspect it's a bit more of a political song, but for me it really has a different meaning. I think the end of innocence is about things that happen and force us to become scarred or cynical and frankly ALS does this in spades. We get a big dose of life isn't fair, really awful stuff happens to good people and a reminder that we not in control of what happens to us. Such as when Bruce says, "When happily ever after fails and we've been poisoned by these fairy tales." 

"Gleason" is a tearjerker and I'll be honest, I had to do things while watching it. This often makes things easier for me to digest. But, I think it really captures how one family manages an ALS diagnosis. ALS journeys are VERY personal and families manage differently so this is really Steve and Michel's story - along with other family members, friends and caregivers.

A couple of items I think are important to note in the film. The first is that at one point Steve has a stem cell procedure. There are a few different stem cell trials going on throughout the United States - they are in the early stages. I think it's important to note that most ALS patients do not have access to stem cell treatments. Only a very small group have been accepted into these trials. This is not my area of expertise, but one of the major challenges for stem cells is how do we get them into the body. There is no FDA approved stem cell treatment. I've often had people say to me that Patrick should get stem cells and generally I joke to myself, "yep, I'll just head on down to Walgreens and pick some up." - pardon the sarcasm.

The other item in the film that I think bares a bit more discussion is the statistic towards the end of the film that states that about 95% of ALS patients do not opt for a tracheostomy due to the high cost of care. I think this is a bit oversimplified; absolutely money figures into this decision, but not exclusively. Frankly, I've yet to meet any ALS family that hasn't stressed over some health care cost. But, I think there are two other significant factors in making this decision, first and foremost - quality of life. ALS patients have to make their own decision about what is quality of life and this is very personal. Secondly, I think there is an undeniable impact on the people around an ALS patient beyond just financial. We were told at Patrick's diagnosis that this is a family disease - nothing could be more true.

I would rate "Gleason" - 5 out of 5 Stars - definitely worth watching, but be prepared to cry and note that this is not a Disney movie - no princesses, no knights, no happily ever afters, just real people, managing a real diagnosis. And just for the record I'm glad I saw it. 

Time and Energy - Figuring Out What is Important

Us

One of the things that you learn early in an ALS diagnosis is that there is limited time and energy during the day. For an ALS patient, simple tasks and movements take much longer and require more energy. I've often heard patients and caregivers say we limit outside activities to at most once a day because that's all we can manage. This is also true for us. The work to make things happen is so much greater at this point in our lives. Because of this, time and energy have taken on new meaning and we must discriminate on where we chose to spend it.

As a caregiver, I find I also have limited time and energy. This is a totally new phenomenon for me and it causes me stress. For those of you that know me, you know that I like being busy. My stress comes from not doing all the things I want to. Before ALS I always felt I had no limits on how much I could accomplish, so now I'm learning to work with limitations. I have to look at things and ask, is this important or can I let it go. Very few things are absolutes, except my most sacred time spent on my morning walk. I'm very protective of my time in the morning... it keeps me sane.

Jake, on our morning walk in his nice red jacket,
a gift from Patrick...
Picture taken before Jake decided he didn't like it.

In addition, to managing my own priorities, I'm challenged with Patrick's priorities. At this point, there is not a lot he can do without my assistance, so if he wants to do a project of any kind, my involvement is generally necessary. This creates stress between him and I, because frankly sometimes what he sees as a priority isn't even on my radar.

This year, in March, I turn the big 5..0... Patrick has been planning my birthday party pretty much since I turned 49 last year. I told him to let me enjoy my final year before I'm half a century old. I actually didn't want a birthday party, it just seemed like too much time and stress. My hope was that he'd let it go. But over the past six months, I've realized that he would not let this go and although Corrinne was conspiring with him, he still needed my help to make this happen. It finally became apparent to me that I needed to be ok with this, because it was important to him and frankly it came out of love. 

So, I'm helping with my 50th birthday party, although I can't take too much credit. A group of friends and family helped to secure a location, find a DJ, cater, create invitations, RSVP web pages and the list goes on. I have to thank my Old Goat friends, Corrinne, Pat & Dave and my favorite sister, Denise in helping Patrick to make things happen. However, reluctant I was to do this, I am incredibly touched by all the activities going on. With Timmons' motto, "anything worth doing, is worth overdoing," it will be a super fun Star Wars evening, with Ewoks, Stormtroopers, and Jedi...

At this point in Patrick's life, it's interesting to see what things he will extend his energy on. Patrick and I have been involved with our local ALS Association since the beginning, we attend support groups, he served on the board and we do various side projects as they arise. One issue that Patrick and I both noticed when attending support group meetings was that caregivers and patients who were referred to hospice had a wide range of experiences - some good and some not so good. We both agreed that hospice, when done well, was such a benefit to the ALS patient and their families. It was odd that experiences were so varied based on the agency or even specific representatives.

If you are not knowledgeable about hospice or palliative care. Hospice is provided to a patient that meets the criteria of being terminally ill and with less than six months to live. Hospice care is a team approach that provides the patient with professionals both medically, psychologically and spiritually to manage a patients end stage of life. 

Over a year ago Patrick began thinking about what could be done to bring a more consistent level of care to ALS patients in hospice. He starting doing research and discovered that the California Hospice and Palliative Care Association was working with the AIDS community to address end of life care for AIDS patients. Which led to his thinking, why couldn't there be a collaboration with the hospice association and our ALS association to address the needs of ALS patients. With this in mind he began corresponding with Nancy Wakefield, Director of Patient Services and members of the Care Services Committee to encourage a collaboration. This has been on his agenda for about two years and he is relentless in his efforts to make this happen. 

I'm thrilled to report that this collaboration is now a reality. A task force between ALS Association Greater Sacramento Chapter and the California Hospice and Palliative Care Association is now working on creating best practices for ALS patients in hospice care. The Hospice ALS Care Protocols Work Group is comprised of people who work directly with ALS patients as clinic doctors and nurses, social workers, hospice care specialists, association staff and caregivers. It is an impressive group of individuals in the ALS community. 

Patrick recommended me to fill a role on the committee and frankly I really didn't know what to expect. I found the first meeting to be very inspiring - the group is engaged, excited and positive about the potential outcomes. Apparently there are other state hospice groups and ALS chapters interested in the final report and recommendations. I couldn't be more proud to be part of this group and to know that it came about because Patrick Timmons wanted to make a difference in the lives of his fellow ALS patients and their families. As Margaret Mead once said, 

     “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

For all my fellow caregivers and patients, we are working on creating a survey to get your feedback on your experiences with hospice - likely it will be posted over the next month. Please complete the survey with your thoughts and feedback. It will be included in one of the upcoming association newsletters and if you send me your email I'll make sure you get an email directly.

I'm inspired by Patrick, his ability to see beyond himself and look to make a difference for all ALS patients. Someone wrote me a note a while back asking to be remembered to him because he was always a great guy to work with. My response... he's still a great guy and he's still making a difference even with limited time and energy. 

I'll keep you posted on the outcomes from the work group - I'm hopeful and empowered. 

All the best to you and yours!