Now That's Funny

Sean and Family Visited Us Recently

The world is a crazy place these days, add in the holidays and ALS and it just makes for a stressed out time of year. Lately, I've been feeling my annual mixture of longing for people who've passed and wishing ALS wasn't part of our story. As much as I love the holidays, I always struggle with a mixture of feelings. However, there are plenty of things to enjoy and be thankful for throughout the holidays; grandchildren, Jake, pumpkin spice, egg nog, Christmas music, and decorations, to name a few. Luckily, I generally snap out of the negative feelings pretty quick.

I was talking with my sister, Denise, and we were having a sad, heavy discussion. I do, on occasion dive into black holes. I think we both realized we were being a bit gloomy, so Denise asked how's the Christmas decorations coming along. She knows I have a bit of an obsession for holiday outdoor decor. I told her, "It's all good, I've got Rudolph the Red Nose Reindeer playing in the window, just about every inch of the front and side yard lit up and I'm hoping to put out the last of the holiday figures this week. I paused and told her, "yeah for a brief moment this week, I stood in front of the house admiring my decorations and thought, "wow, you've really gone over the deep end this year."

Denise laughed and reminded me that I was talking to a woman that is collecting little holiday birds from Target and is now nearing 20 birds. She tags and names each bird. Honestly, they are pretty cute.

 "The Tweets" Aspen, Sierra and Whistler - Denise's Birds

It was such a wonderful moment of release... the conversation turned pretty quickly to our dad at Christmas. He would take the family out to the woods to chop down a tree. He had an incredible knack of finding the most disfigured, sad, sorry looking tree. In future years,  Patrick would label dad's tree selection "the Charlie Brown tree." We all looked forward to seeing the tree each year.

I am reminded of the power of laughter in difficult times. It helps us to cope and with ALS, reminds us to laugh at the absurdity of it all. A few years back in a support group meeting, there was a moment of levity amongst caregivers, honestly I don't remember what was said just that it was funny. I remember a new caregiver after the meeting complaining that laughing was not appropriate and that ALS is a very serious disease. I thought about this gentleman many times over the past few years wondering how he's doing, he never returned to support group. The truth is he's right, ALS is a very serious disease. What he failed to recognize was that everyone in that room knew that. We don't need to be reminded, we know how this disease progresses, we know the statistics, and frankly we know the outcome. But those brief, wonderful moments of laughter make a serious diagnosis bearable.

Some of the funniest stories I've heard come from ALS caregivers and patients, as strange as it may seem. One of the most stressful events for me, in this journey, was learning to use the Hoyer lift. I felt very overwhelmed psychologically and it was a struggle to figure out a process. It drove me to tears a couple times. Patrick has a great sense of humor and knows when I'm stressed, so at one point during this process as he's dangling from the sling, butt naked, he yells to me "take a picture for the blog." Honestly, in the moment it wasn't that funny, but afterwards hysterical.

Elevators with a power chair are a bit of a challenge. The doors shut too quickly for a disabled person to get in (they need some kind of delay system), and often they are shaped incorrectly. There is an elevator in Patrick's doctor's office that is a pain in the arse. It shuts quickly and is shaped rectangular making it necessary to turn in the elevator. As the disease progresses, it gets tougher and tougher for ALS patients to control their power chairs - yeah watch your toes. Before Patrick turned over controls to me, which he still hates, we had an "incident" in this elevator. In addition to the weird shape, the building decorators thought to put a "painting" in the elevator that stuck out from the wall.

Patrick was getting in as tightly as he could, allowing me to stand behind him, when we heard a ripping sound. I wasn't sure what the noise was from, but as he continued to get his chair adjusted we heard more and more ripping noises. I finally noticed that the "painting" was dangling off the wall by a piece of Velcro and stuck on the back of his power chair. When we arrived at our floor I casually velcroed it back to the wall, smoothed over the tear which was pretty good size and we both started laughing. You gotta laugh at this stuff. Come on, who thought having a painting stick out 2 inches in a medical elevator was a good idea. Now don't worry I don't think it was a Van Gogh or Picasso, so no masterpieces were damaged. 

Humor and laughter is found daily in our lives, here are a few of the things that made us laugh recently...

This is Elizabeth, our youngest grandchild. Don't be fooled by the cute face, this one's trouble. Recently, she went through our bathroom cupboards and found feminine hygiene items, removed the tape and stuck them around the bathroom. -- Not sure what the plan was, but she was busy.

Elizabeth

Jake loves the Christmas tree, he disappears during the evenings to the front room to sit and stare at it. He moves from couch to couch.

A few years back our Elf on the Shelf, Fred disappeared. So, Jack Skellington now makes his annual appearance - he's got a bit of an attitude.

Here are this year's outdoor decorations, still a work in progress...

No, you will not find a photo of Patrick in the Hoyer lift - I do have limits.

To you and yours Happy Holidays & Merry Christmas! Wishing you a peaceful 2018, in which we all strive to be our best selves.

Advice for the New Caregiver

2017 Walk to Defeat ALS

My caregiver journey started with buttoning Patrick's shirts and clipping his nails. Fast forward about five years and my list of duties includes everything from showering and bathroom to managing equipment and prescriptions (and all things in between).

Being that November is National Caregiver's month, I've decided that I have some advice for the new caregiver or advice to my prior self of five years ago. At this point, I have a pretty good understanding about being a caregiver - I guess I consider myself an expert in the field (no credentials, no certificate, no three letters after my name... just on the job experience).

My first bit of advice is about... advice

Take it or Leave it... "Friendly" Advice
Through this journey you will get lots of advice, suggestions and opinions. Honestly, I've received some great advice from a variety of sources. Sort through the advice; it's ok to ignore some, it's ok to laugh at some, and its ok to say thanks, but no thanks. Generally people have the best of intentions so be thankful for their interest, but know that you are not obligated to take it.

With that being said, you are welcome to embrace my "pearls of wisdom" or "discard in file 13." Or do what I generally do - "cherry pick."

No One Stays the Same...

One of my favorite artists, Leonard Cohen states in the song, A Street

"I’m standing on this corner, where there used to be a street"

This is such a great description of how it feels when your world is abruptly changed with an ALS diagnosis. Life as we know it has ended and where do you go from here? I don't have the answers for that, all journeys with ALS and in life are unique. Which way do you go, left or right? I can remember standing on that corner for a long time when Patrick was first diagnosed feeling paralyzed.

You'll stand there for a while too... wallowing in self pity, angry at the world and unsure of where to go from here. It is one of the most painful memories I've had on this journey. 

I can guarantee you one truth, you will never be the same again. None of us get out of this journey the same as when we started. Where we end up, I don't know the change is ongoing, but I know parts of me are profoundly different than five years ago.

I'm not the only one in the family that has changed on this journey. Caitlin, who is now a Gator at SFSU, came home last week to join us on the Walk to Defeat ALS. While I drove her from the train station she talked about the sushi place she liked and the theater she went to with her roommate. During her discussion, she mentioned the handicap access at both locations. It wasn't her primary focus, it was just her observations of "how dad could get in with his wheelchair or not get in as the case may be." It dawned on me that she would forever be influenced by this journey. I'm not going to qualify this change as good or bad, frankly it just is.

You Get to Have Feelings Too...

You will not make it through this journey without allowing yourself to mourn, be angry and experience sadness. You will have losses on this journey. No matter how you manage caregiving, you will make sacrifices. You cannot take care of an ALS patient and continue to do everything else you did prior to ALS nope, it is not physically or emotionally possible. You are allowed to be sad and mourn these losses.

I quit my job four years ago and over the past few years limited my volunteer work. Do I miss these activities? Of course I do. Do I regret my decisions, no I don't. But that doesn't mean I don't feel a sense of loss and sadness. I give myself permission to grieve, I find it's easier to manage feelings when they are acknowledged and recognized. It also says that I am important and my losses are as real as anything else. Which leads me to...

You Are More Than a Caregiver

Yes, you will give things up on this journey, but don't give up the things that make you - YOU. It is important to have an identity outside being a caregiver, don't get swallowed up. For many years prior to ALS, I put on a Girl Scout Halloween party for over 100 scouts. With a group of Girl Scout friends, family (including my supportive husband, Patrick) and older girl scouts we put together a fun evening that included everything from a Halloween dinner with zombie wait staff doing the thriller dance, to mad scientists, and gypsy fortune tellers. 

Past Girl Scout Halloween Party

No, I can't put the energy I use to into a Girl Scout Halloween Party. But I still enjoy Halloween by doing a family dinner, decorating the house and helping with the grand kids costumes. I get lots of nice compliments from the neighbors on our decorations and it allows me to continue being creative... I've been blessed with a supportive husband who rarely says I think that's a bad idea. Although, he did tell me that the 9 foot T-Rex skeleton is too big to store in the garage.

You need to determine what things you love and want to continue, than adjust and find a way to continue to do these things albeit differently. You are more than just a caregiver, find other important things that define you. 

How We Measure Up

Halloween 2017

I'm not sure why, but you will make comparisons to other caregivers. I had a fellow caregiver tell me, "you are amazing, how do you do everything." This came from someone I thought was in the "sainthood" realm of caregiving. For some reason we make comparisons; wow, they are doing so many activities; wow, they are really happy all the time; or wow, how do they have so much energy. Yep, we compare. I give myself permission to make comparisons, but I stop short of berating myself for things I don't seem to do as well. The truth is we only see what is presented to us and I suspect even the best caregivers have bad days.

When you're at the beginning of this journey, its really easy to say, I won't do this or I would never do or say that. Be careful, things often look different five years later and you might surprise yourself. Don't pass judgment on other caregivers' decisions. We all make the decisions that work for us based on our strengths and in a particular moment.  You may or may not make the same ones. That does not make one way right and another wrong. We are different people all working to meet the challenges presented.

Dumb Things People Say...

If you haven't already, just be advised that you will have strange, unthoughtful things said to you on this journey. Very early in Patrick's diagnosis at a party, a woman (someone I had just met) proceeded to tell me why she would leave her husband if he were to get ALS because the sacrifices would be far too great for her. I wish I could say I said something clever, but I just stood there a bit dumb founded. She went on for at least five minutes explaining all the reasons it would be too hard and at the end handed me her phone number and told me to call her anytime. All I can say, is that her husband is one lucky guy;) Yes, I'm being sarcastic and no, I never made that phone call.

Sometimes I think people just don't realize what they are saying. Which leads me to...

Forgiveness

Get angry, stomp around, watch revenge movies and then... forgive. You just can't hang on to things forever. This is NOT a fair diagnosis and the journey does NOT get easier. Allow yourself to feel and be angry and then let go. Let go and forgive, not for other people's benefit but for yourself - you will go crazy if you don't.

Forgiveness is so powerful. It allows you to reflect and release... It takes the power away from ALS or the person who wronged you and returns it to you.

I've also learned to forgive myself. I'm not a saint, I get tired, I have bad moments and I have anger; at the disease, at stupid comments and at a variety of other things. I forgive myself and acknowledge I'm doing the best I can and frankly I'm doing ok as a caregiver.

Awesome Responsibility

Being a caregiver is by far the most awesome responsibility I've ever had. It's a bit scary at times. I remember when they first delivered and spent a couple hours explaining the respiratory equipment. I kept thinking, am I the right person for this, I have a degree in accounting. The truth is no one would volunteer for this job without loving the person they care for, it's all about love.

Finally, and most importantly you'll be fine and you'll make things work. Remember the saying, "you can't see the forest for the trees." In ALS this is a a good way to look at things. Concentrate on the trees immediately in front of you and leave the forest for another time. Not the usual way to look at problems, but a little at a time tends to work with ALS.

Happy National Caregiver's Month and a huge thank you to all my fellow caregivers! Never doubt what you do is important and makes a difference. 

I'll leave you with some pictures of our Halloween decorations. Happy Fall and Happy Halloween!

Loss and Connection

Eclipse

On my morning walk, I stopped at the Aquatics Center parking lot to conquer a Pokemon gym - yes, I enjoy catching critters, hatching eggs and fighting gyms in the virtual world. While I sat and was just getting ready to leave, a car drove up right beside me. Bummer, I figured they were Pokemon players that wanted to take over my newly conquered gym. The SUV stopped and a lady got out with her phone in hand. Bummer... We made eye contact and much to my surprise she began to cry and very quickly started telling me about her son, who was missing and had not taken his medication.. She spent about five minutes describing her son who had schizophrenia and her concern that he would do harm to himself in his current state. I wanted to tell her something to console her, some words of wisdom to make it better, but I had nothing. She left as quickly as she came with someone calling her to say they found her son - off she went.

It was such a brief moment and yet I've spent the past few hours thinking about it. The truth is I've been thinking about how sorrow unites us all. We mourn for the hurricane victims in Texas and Florida; and the earthquake victims in Mexico. We are miles away and yet we are greatly saddened by the devastation and human loss. We are all connected. I couldn't help this lady, but I could listen. I don't know what it would be like in her situation, but I had empathy for her feelings and felt her pain. I hope she found her son and she's able to get him the care he needs, but I doubt I'll ever hear the end of her story.

The truth is I believe our greatest connection to one another is not happiness or shared joy instead it's our connection during sorrow and grief.

"Grief and sadness knit two hearts in closer bonds than happiness ever can; and common sufferings are far stronger than common joys" Alphonse de Lamartine

Perhaps I've been thinking about this lately because we got word of an old friend's passing and another we lost to ALS.

We received a call from Mary Ellen Webb, an old friend who let us know that her husband, Russell, had passed away. This came as a shock to us, Russell was one of the first people Patrick met when he went to work at Electronic Data Systems (EDS) back in the early 1990s. He and his wife are such kind people it really saddened us to hear of his passing. Here is a link to his obituary
.

Cheryl & Mike Strella

Additionally, on August 31st we lost a fellow pALS, Cheryl Strella. Cheryl was a strong advocate for ALS patients and traveled to D.C. to draw attention to the needs of pALS and their families. Cheryl was a nurse and later an associate professor at Sacramento City College. Because life has it's full circle moments, one of the hospice nurses that cared for Cheryl had been one of her students. Here is a link to her obituary - she lived a full life, albeit too short. 

Cheryl's husband Mike and I have shared concerns and stories in support group and an occasional instant message - my prayers and thoughts are with him and his daughters.

If there is an upside to my recent thoughts on loss, its this... even with all the division today, there is so much more that unites us, than divides us. We are all connected through our shared humanity.

I hope this day finds you well - the weather is improving (here in Roseville) and my walks are much more pleasant.

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!