Happy National Caregiver's Month: How Did I Get Here?

I've discovered quite a bit about myself on this journey. If ALS does anything, it certainly pushes us to our limits. November is National Caregiver Month, I don't know why it's important to me, but it is. I guess it reminds me that I'm not alone and somebody had the good sense to recognize and celebrate "us caregivers" for a whole month. I should point out that for me, a caregiver is a family member or friend that cares for someone they love. I know there are wonderful people out there that do care giving for a living, but their experiences are a bit different. I dedicate this blog to all my fellow family/friend caregivers.

How did we get here?
How did we get here? This is a question I've muttered and thought so many times over the past four years - 5 simple words. Often I include an expletive in that sentence, but I'll refrain from that in this blog. Truly there is no answer for this question, except perhaps a line from the John Lennon song, Beautiful Boy, "life is what happens while you're busy making other plans." My dear friend, Therese (an ALS caregiver), mentioned this phrase to me on the phone the other day - seems that it's not mine exclusively. Frankly, it's been a trying month for us, so this has been an ongoing thought for me.

Before ALS, I never really understood the challenges that having a disability can bring. Simple things like, going the bathroom, voting, getting out of bed or taking a trip to the grocery store and the list goes on, have become major events. I considered doing a "day in the life" segment for National Caregiver's month, but instead I think I'll just highlight a few activities that previously I never gave a thought about and show you how we manage them with ALS in the picture.

Surgery: Pre-Planning & Managing a Timeline
I try very hard to schedule Patrick's appointments in the afternoon. He goes to bed late and sleeps in. In the morning while he's sleeping, I take a walk. For Patrick he needs his beauty sleep and for me I need my walk. The morning time allows me to rejuvenate and face whatever comes in the day. But with all things sometimes a morning activity or appointment can't be avoided, so it takes a bit of discussion and pre-planning. 

The second feeding tube surgery that we had this week was scheduled for 11:30am at Sutter General Hospital in downtown Sacramento. They needed us at the hospital at 9:30am for registration and pre-op. To get there on time we work backwards from the 9:30am arrival time. To some degree we all do this, but with ALS in the picture you have to budget quite a bit more time for regular activities and potential surprises. It's important to note that you really can't speed the process up... so if we're running late, frankly we're just going to be late.

Here is our schedule for getting to Sutter Hospital based on a 11:30am surgery... (working backwards)

11:30 Surgery
9:30 Arrival
8:30 Depart House
8:15-8:30 Get Patrick in Van and stuff (out the front, up the ramp, clamp down all buckles belts and seat belt, adjust his seat for comfort, sunglasses for each of us) Load SGD (Speech generating device and related items), paperwork and identification for surgery and Cheryl stuff (book, purse, phone)
6:45-8:15 Get Patrick up (hoyer lift, bathroom, shave)
6:00-6:45 Cheryl (shower, tea, dress)

No breakfast was scheduled because Patrick couldn't have any food for 12 hours prior to surgery. Breakfast would have greatly increased the time in the morning. 

This doesn't show all the little things that have to happen but this is what we look at when making an appointment. Additionally, our night activities have to be adjusted because Patrick hits the hay about midnight and me about 1am. So, we make every attempt to get to bed earlier.

I try to anticipate all potential "bumps in the road" so things go smoothly, but it is difficult. When we were at Sutter Hospital an orderly came to the pre-op room to take Patrick's power chair and personal items to the recovery room. My first thought was no I'll take care of it, but I didn't want to leave Patrick so I let the orderly take the items. Unfortunately, when we got home I realized that the chair head array had been moved and the controller was stuck in place. So, we'll be headed to see the medical equipment company to have them repaired. Moving a power chair is not as easy as it seems.

While in pre-op, the general anesthesiologist spent time with us going over the various options and risks affiliated with the surgery. These days I spend quite a bit of time as a translator, I understand his speech better than most. As the doctor was leaving he came over to me and said "you know there is a special place in heaven for you," I think I must of looked a bit surprised because he then said, "truly, there is." After a difficult month, it was such a kind comment. 

Voting

WE VOTED!!

This year we really earned our "I voted" stickers. It's been a busy month, so when I got our voter registration materials I really didn't give them a second glance. I thought I had put Patrick on permanent mail in ballot so I believed us to be all set. When I finally looked at his sample ballot I realized he was still slated to vote at our local polling place: the middle school a couple blocks away. I called the election's office to have a mail in ballot sent, but you can't speak for someone else and they couldn't understand his request on the phone. After speaking with 5 different staff members, his options were to go to the election's office and pick one up, vote at his local polling place or send in a request for a mail in ballot. I took the last option and mailed a request for a mail in ballot. Unfortunately, although we made the request before the date on the form, they called and said it was too late and he needed to go to the polling place. Determined to do our civic duty we figured we'd work with the poll workers and make this happen. 

Every election we spend a few hours going over the propositions, debating and filling out our sample ballots. Frankly, we should have done it earlier, but we wound up spending election day afternoon going over each item and it took the usual few hours. Unfortunately, I really didn't think this through because by the time we were done it was 5pm and starting to get dark. That really wouldn't matter except that our van was in the shop so the plan was for us to walk over to the polling place, which is a few blocks down on the bike trail next to our house. Anyway, with darkness settling in I realized there is no lighting on the bike trail, I searched the house for flash lights and finally gave up and went to the store to buy a couple of new ones. This was one of those, "how did I get here?" moments. 

Just an aside, we use a lot of pleasantries in every day life. Phrases like, "how are you," "what are you doing today,"  etc. etc. I know that the answer folks are looking for is fine or good or nothing really. But sometimes when I'm asked these questions, I have a stress moment and answer the question honestly and with way too much information (TMI). When the Raley's clerk (who looked to be about 25) asked "what are you doing with the flashlights." I responded something like this: "Well, I'm trying to vote, my van is in the shop and I couldn't get my disabled husband a vote by mail ballot, it's getting dark and the polling place is down the bike trail which is not lit and I'm a bit concerned about him using his head array in the dark, even with the flashlights, once we get to the polling place I'm hoping it won't be a hassle because my husband has limited speech and can't use his hands." At this point, I realized I was rambling and the clerk looked a bit shell shocked. Oops, I thought, I said all of that out loud, I chuckled and told her "no worries, it's all good - life is just an adventure sometimes." She laughed, but I think I traumatized her a bit. As I left the store she yelled after me "I hope it all works out and you get to the polling place, it's important to vote." 

When I got home, we took the flashlights, the dog and the ballots and headed down the bike trail. Other than my own personal nerves the walk was pretty uneventful. The polling staff was quite nice and eager to help so that went smoothly. Last election, the polling place was on the stage in the school cafeteria. The staff didn't know how to use the disability lift so it was a bit of a challenge. This time it was in the gym so there were no stairs or lifts to navigate. Anyway, we made it with an hour to spare. Yes, we truly earned our stickers this year!


Going to Bed
One of the things I miss is simply falling into bed, especially after a stressful day. The process of going to bed takes me about two hours from start to finish. I usually begin around 10:30pm in an attempt to get to bed about 12:30pm. I start with getting Patrick's bedtime medications, pulling them out and cutting a couple of them. With his bulbar changes, we moved from using water/juice to swallow pills to applesauce and soon we'll move to the feeding tube. Either way, a few of the pills are just too difficult to take whole. He takes his pills and uses the cough assist machine. This machine pushes air into his lungs and then sucks it back out - like a cough, hence "cough assist." It helps bring up the phlegm and mucus that accumulates.

He heads upstairs on the lift, we brush his teeth, go to the bathroom, undress and transfer to bed. These activities all are dependent on me, he isn't capable of doing them himself. It takes about an hour or more depending on activities.  When I get him into bed, I set up his respiratory equipment, this usually goes smoothly, but sometimes it can be tricky getting it just right.

Then I start my chores, taking the dog out to go to the bathroom, putting the garbage cans (on Friday) out, plugging everything in, general tiding up and ultimately get myself ready for bed. It's my evening activities and few things get done without my involvement.

This is the life of a caregiver, it's not glamorous and jeans and a t-shirt have become my staple. I wouldn't have chosen this career, I do it out of love not for pay. I say this to my fellow caregivers, of which there are many in this country, you are not alone. When you have those moments where you are think "how did I get here?" Remember, what you do is important and that there is a special place in heaven for you, truly there is.

Happy National Caregiver's Month!

Feeding Tube Update

Just a quick follow-up on Patrick's surgery. We spent the day yesterday at Sutter General Hospital in Sacramento for a second attempt at inserting a feeding tube. I'm pleased to report the surgery was a success. Dr. Zipser, the radiologist, had some difficulty with the location of Patrick's stomach, but after collaborating with another doctor, he was able to get it placed.

Selfie at Sutter General

Gail, a nurse practitioner from Dr. Zipser's office, taught us how to use with the feeding tube and we've used it a few times already. As for his recovery, Patrick is sore, but no problems from the surgery. With all things we are adjusting to the change; making sure not to tug on the tube, figuring out how to accommodate Patrick's best buddy, Jake, on his lap and heading over to the pharmacy to see about changing medications into liquid format.

The Sutter staff were wonderful throughout the day, a huge shout out to them! I got lost in the hospital a number of times (Sutter is not an easy hospital to find your way around in) but staff seem to recognize lost individuals and took a bit of pity on me.

Thank you for all your prayers and warm thoughts.

How is Patrick Doing, #9 - Part II: Bulbar Challenges - The Feeding Tube

In addition to Patrick's speech issues, he is now challenged with other problems from the impact of his declining mouth, tongue and throat muscles. This is commonly referred to as the bulbar region in ALS, which references the head and torso. When ALS affects the bulbar region it impacts the speech, respiratory, digestive functions and core muscles. We are facing a variety of these issues and the most troublesome is Patrick's ability chew and digest food and drink. This has forced the decision to have a feeding tube surgically inserted.

Bulbar Changes: Eating and Drinking
The muscles in his mouth, lips and tongue are becoming quite weak which makes it difficult to move food around, suck from a straw and ultimately creates choking problems. We started with eliminating some foods from his diet simply because they were too difficult. These included candy (specifically sticky candies) and cold vegetables these are just too difficult to chew up. Most foods must be cut or minced into small pieces so chewing is minimal. We've had some scary choking moments where it was necessary to use the Heimlich Maneuver, so we work to eliminate any potential hazard. However, as time progresses this gets to be more and more difficult.

In addition to foods, he is also starting to be challenged by fluids. It surprised me, but one of the most choked on liquids is water. Soda, juices or thicker beverages (smoothies or shakes) are easier to digest and reduce choking. The struggle with this is that because his mouth muscles are impacted he is starting to lose his ability to suck from a straw. This makes thicker liquids better for reducing choking but more problematic for sucking through a straw. You never "win" with this disease.

The time to chew and swallow a bite of food probably takes three times longer than it use to. Aside from the bummer that your food goes cold, you also just don't always get enough digested. There are other risks due to bulbar decline including dysphagia, dehydration and aspiration pneumonia. 

Sadly, overtime Patrick will lose his ability to eat and drink orally and these functions will need to take place through a feeding tube. As with all ALS problems, it is critical to make decisions and be proactive before they become unmanageable.

Feeding Tube: Decision and Process
Let me point out that not all ALS patients get a feeding tube, either because it doesn't become necessary or they decline to have one. Often the decision has quite a bit to do with the way the disease progresses. A feeding tube will prolong your life so it is an individual decision as to whether or not to have it inserted. In Patrick's case his respiratory decline is not significant yet so if he decided to decline a feeding tube he would likely die due to dehydration or starvation.

The other issue with a feeding tube is the question of timing, when do you have the surgery completed. Insertion of a feeding tube is not major surgery, but with respiratory decline there can be issues with the use of general anesthesia. Often doctors will encourage patients to get the feeding tube put in before the respiratory decline becomes too significant. This reduces the risks of respiratory problems during surgery.

The feeding tube has been one of the most difficult decisions for Patrick. In July, we were told at clinic to get the process moving, now. We've learned that you don't want to let things go until you need them, because if you need it NOW then you've waited too long. Things like ordering medical equipment, having surgeries and making home modifications require time, planning and preparation. So, delaying the surgery was not a good option. This is the first time I've really seen Patrick drag his feet during this journey, he says he's not excited about "a hole and tube in my stomach."  Frankly, this is a significant milestone in the ALS journey, the primary causes of death are with challenges to the bulbar region, so it's a reminder of how far he's progressed.

I should point out here that getting a feeding tube does not negate the ability to eat food by mouth. It simply provides another means of getting fluids, food and medications into the body. Over time he will completely lose the ability to orally digest but that isn't the case yet. 

Medical Directives
The surgery brought up the discussion of medical directives. In the event of a problem during surgery what did Patrick want to have happen. In addition to advanced medical directives we completed a POLST (Physician Orders for Life-Sustaining Treatment) for the hospital so it was clear what decisions were to be made or not made. 

I believe in direct communication although its not fun or comfortable. I want to be sure that I'm doing what Patrick wants and decisions are not made at stressful moments. My recommendation, tell your family what you want, what you don't want and do the appropriate paperwork - it makes life easier for your loved ones and you won't find yourself on the receiving end of decisions you did not approve.

Surgery
The ALS Clinic referred us to Dr. Feinstat here in Roseville and if you're looking for a gastroenterologist I would highly recommend him. We met with him and went over the procedure and the various considerations. There were two different procedures available to Patrick for feeding tube insertion: "the radiologically inserted gastrostomy (RIG), and the percutaneous endoscopic gastrostomy (PEG). Both RIG and PEG tubes are inserted directly into the stomach through the abdomen and held in place internally, however, the procedure for inserting them is different." (Massachusetts General Hospital, Neurology) 

We decided to go the PEG route to have the feeding tube inserted and we scheduled surgery for this past week at Sutter Roseville Hospital. 

We got to the hospital two hours prior to the scheduled surgery, filled out paperwork and got prepped by the nurses. With Patrick's limited mobility and a hoyer lift being required to move him to the gurney his prep time is a bit more involved. I was impressed with the nursing staff at Sutter Roseville Hospital, while they were transferring Patrick in the hoyer they asked me for the best methods of transferring and were not defensive when I changed the way they were using the hoyer. At one point one of the nurses said its always important to ask family members advice, after all they work with the patient every day. Which I thought was a nice acknowledgment of a caregiver's knowledge and experience.

After his prep time I headed out to the waiting room. Sutter Roseville Hospital is a new facility and its quite open and friendly. While we were waiting, Marley, a hospital service dog, even stopped by for a visit. Now you know Patrick and I love the dogs. So, I settled in while Patrick had his surgery. It's kind of weird sitting in the waiting room with an empty power wheelchair, but that's what I did. It didn't take long before Dr. Feinstat appeared and told me Patrick was fine, but that there was a problem in finding Patrick's stomach and he was unable to insert the feeding tube. With all the concerns we had about the surgery, this was not even on my radar screen. Dr. Feinstat said its not very common and certainly not something he thought was going to be a problem. 

So, it's on to plan B, which is having the surgery done through radiology (the other method for inserting a feeding tube). The surgery is scheduled for next week at Sutter General Hospital in Sacramento. Send your prayers and good wishes on Thursday!

On a Fun Note...

Moon Tree - Sacramento Capital Building
Taken By Uncle Burton

During the ALS Walk weekend in October some of my mother's family came out from Arizona and they all went sight seeing. Patrick and I have always been fascinated by the "moon trees" that traveled on Apollo 14 as seeds and are planted around the world. During their sight seeing, Patrick asked them to find the moon tree at our California State Capital Building. They found it and took some wonderful photos. They are now seeking them out and taking photos of the ones they find. Here is a link to the video where we first learned about the moon trees, Huell Howser's California's Gold

So, while we were waiting at the hospital we were gifted by photos of the moon tree in Fort Smith, Arkansas taken by Aunt Sherrie while she was on vacation! I'll leave you with some moon tree pictures...

We would love to have you join us in finding the moon trees! Here is a link to where they are located, they are all over the United States and abroad!

Moon Tree Locations: http://nssdc.gsfc.nasa.gov/planetary/lunar/moon_tree.html

Take pictures and post them to our Walk to Defeat ALS -Team Timmons Facebook page https://www.facebook.com/teamtimmons1/, our individual Facebook pages or email them to Patrick at pjtimmons@hotmail.com! 

Sebastian County Courthouse in Fort Smith, AR
Taken by Aunt Sherrie

Moon Tree Plaque at Fort Smith, AR

Happy Halloween!!

How is Patrick Doing, #9 - Part I: Being Mobile

Heading out!

The ALS progression continues to challenge us. We do our best to adapt and keep up with the changes. There are two major issues we are currently working on. First, is changing the power chair controls from hand control to head control. Second, is managing the changes in the bulbar region (mouth, throat & facial muscles). This blog will be split into two parts with this part being devoted to wheelchair changes.

Power Chair Controls

Patrick has lost most control over his hands and this requires us to find a new way for him to control his power chair. We spent over three hours in the wheelchair "shop" this past week switching out the hand controls for head controls, as well as changing the arm wrests to make for a more comfortable ride.

Additionally, we added attendant controls in the back. Sometimes I think I'm sort of naive in the way I look at things because it just didn't occur to me how difficult this change was going to be and that I would have to be more active in driving the power chair. However, I think the phrase, "ignorance is bliss" is true in this case. If I really had given thought to this change it would have just caused stress so frankly being a bit ignorant delayed my anxiety. If you've never driven a power chair let me be the first to tell you - it's not easy... there are six wheels that pivot so you have to make sure to get them all going in the right direction. 

On my side, I'm starting to feel more comfortable but I'm still stressed getting him in and out of the van on the ramp or on/off the lift... and I don't think he's thrilled with me being in charge of these activities either. In my defense, he hasn't taken a nose dive or ran into any walls as of the writing of this blog, but I do go VERY slowly. The lift in the house is another scary area, but we are continuing to practice and so far no one has made the two-story drop. 

On Patrick's side, he has the challenge of learning to control the chair with his head. Could you imagine having to control something with your head or eyes?? Well, in Patrick's case he is absolutely amazing. Yes, he has run into walls and doors. But, he's getting better all the time. There are moments in this journey when I have to say the man is super amazing. His determination to make things work, adapt and keep calm is simply inspirational. And in all honesty, he does it with tremendous grace. So, I keep thinking... if he can do it with his head, I can certainly do the same with the joy stick. 

He did a pretty nasty run into the wall the other day and removed a good chunk of paint. After this incident we were in the van and he kept trying to tell me something. Unfortunately, my interpretation skills while driving are not too good. It sounded like he was saying he was in pain. I kept asking where, your leg, your knee, your foot. I could tell I was frustrated and finally I realized he wasn't saying "pain," it was "paint" - he was stressed out over the ding in the wall and wanted me to get paint... funny guy.

Do you remember the old Tom Petty song, "Learning to Fly"? I loved that song when it came out and it still gets stuck in my head every now and again. With Patrick's recent shift from using his hand to using his head, this song really works for me.

"I'm learning to fly, but I ain't got wings, coming down is the hardest thing."

A strange side note on Patrick's head control. It makes a beep when he does various commands.  Well, this beep noise makes Jake CRAZY. So, in addition to Patrick having the challenge of learning to drive with his head he has to do it with the dog running around like a nut case. 

Here is a video of Patrick practicing driving on the bike trail next to our house:

If you're joining us at the Walk to Defeat ALS next weekend (and I hope you are) please give Patrick a wide berth or be prepared to jump quickly!! :) If you have not yet registered for the walk it's not too late, here is a link to the Team Timmons page: http://websac.alsa.org/goto/Timmons

Happy Fall!

The Unwelcome Guest

I spent a fair amount of time with my grandparents. They lived about two miles from my house growing up. I remember when I was quite young my grandmother seemed upset after a phone call, so I asked what was wrong, she replied "at my age, Cheryl, most of the people I've known have died." It was a look of incredible melancholy and sadness. It's a moment I've never forgotten and in recent years thought about quite a bit. The truth is Patrick and I have seen many of our ALS friends and others pass away.

In the past six months we've attended three funerals. The last one was a week ago and I was thinking afterwards how I'd like a breather from death, grief and loss. It's a bit like having an uninvited unwelcome guest that won't leave.  But this was not to be, as we were sitting on the porch yesterday, I got the phone call, Sam had passed. Sam had ALS and we participated in grief group together and honestly was one of my favorite people. He texted me poems and his thoughts on life while riding along in his wheelchair next to the river. I wasn't the only recipient there were others, but he and I had a connection. I attended grief group in July after being absent for some months. The minute I walked in Sam says, "well look what the cat drug in." That was Sam. He had the great sense of humor and said what he felt. He told me once that although his body doesn't work right, he could still express himself with this - and he held up his middle finger... he made me laugh.

Sam was an artist, poetry writer and teacher. He taught me a number of life lessons over the past few years. He taught me about karma... At one point in Sam's ALS journey, he had to use the bathroom at Barnes and Noble and realized after sitting down that he was stuck on the toilet. This was quite a scary moment and he began asking the various men that came into the restroom for help. Now, picture yourself going into a public restroom and having someone in a stall ask you to come in and help... yep, according to Sam most left pretty quickly. But, as panic starts to set in, one man responded to Sam and said Mr. Sam is that you? Sam remembered the voice with the distinct accent because he had volunteered his time to teach English at the local community center. The man was one of his former students. He helped Sam get cleaned and dressed and back into his wheelchair. Karma.... yes, I believe it was karma.

He taught me about giving back... he said that when he was in public on his walks or at the store he made a point to speak with children. He said, as a child, disabled people scared him, especially wheelchairs. He felt it was important that he showed children that people in wheelchairs were just normal people. I found this very moving, because like Sam, I also was afraid of disabled people as a child. They were different and that made me uncomfortable. I think the more children spend time with people with disabilities, they will as Sam would say, "recognize that they are just people too... but with wheels."

He also taught me about death and dying. Sam did not shy away from the tough discussions or the elephant in the room. Let's be honest, our culture is very uncomfortable with the issues surrounding end of life decisions and dying. Sam was not. He was incredibly candid, he wanted to die. He had spent over 10 years with ALS and felt his journey was complete. By the time I met him he had long since worked his way through the many stages of loss and grief. He never wavered from his belief and acceptance of his own death. It wasn't depression, it was an interesting acceptance. In July, when I saw Sam his health was quite declined and his thinking was the same he was ready to go.

I got the phone call... Sam had passed and chose to exercise his right under the new California End of Life Option Act which went into effect June 9, 2016. A huge rush of grief hit me, my friend was dead and it was by his choice. Initially, I felt a pang of anger, why would he choose this, but it passed quickly, reminding myself, this is what he wanted. I know he is in a better place, but I'll miss his stories, sense of humor and frank discussions. Ultimately, we the living are the ones left to make sense and peace with loss. I will say it was worth the pain of loss to have known him for this brief time.

The family has decided to have a closed service with immediate family members only. That's ok with me, he lives on in my memory. I know he is at peace, there is comfort in that. But, if I'm being honest the world really was a better place with him in it.

How Much Does it Cost?

I find myself asking "how much does it cost" a lot. Generally, I'm not very thrilled with the answer to this question, but it has to be asked. Living this life and knowing all the wonderful PALS and CALS (patients and caregivers) I've determined that ALS is a disease of inequality. For an ALS patient, quality of life is directly affected by their financial situation, insurance, and/or access to benefits. 

The past few months we've been working to get Patrick's wheelchair controls changed from hand control to a head array. I'll shorten the story a bit and say what we ultimately found out was that the head array for his chair has a maximum benefit with Medicare that comes no where near the cost of the device. I'll give you the low down (I'm a CPA, so I like numbers)

Retail Cost - $9,700
Medicare - ($3,200)
Cost to Us - $5,500

Now to be fair the medical equipment supplier is a supporter of the ALS community and was willing to sell it to us at cost which is about $6,000. But even at that rate we were looking at about $3,000 out of pocket. Just to add to the financial consideration we were told that maybe Medicare will pay the 3,200 and maybe they won't; apparently they are not consistent and often will not approve this type of medical equipment.

Our New Head Array

Unfortunately, the loan closet didn't have a head array so that was out of the question. Patrick set out to find the head array at a lower cost - he's a bit of a dog with a bone kind of guy. He wound up finding a used head array on sale on eBay - yep, we now buy our medical equipment on eBay. He negotiated a deal and got the head array for $1,600, our medical supplier checked it out, gave a thumbs up and told us we got a good deal. We are now the proud owners of a working head array. 

We go through this type of financial consideration quite regularly, as do all ALS patients/caregivers. In just the last week I've talked with fellow ALS caregivers about prescription costs, access to medical equipment and insurance limitations. In every monthly support group (at least with caregivers) someone will ask "how much does it cost" or discuss financial challenges due to ALS. The ability to renovate your home, purchase a disability van, hire a caregiver or buy a head array does make the difference in the PALS/CALS quality of life. Sadly, I know that often decisions are made not because the item isn't needed, but because the cost is just out of the question. 

Another huge ALS expense is caused by the Medicare gap or "donut hole" (I hate to use this phrase because it really gives donuts a bad name). You enter the "gap" after $3,310 has been spent in prescription costs. In the gap only a portion of prescription costs will be covered (45% for brand-name drugs and 58% for generic drugs). After the patient spends $4,850 out of pocket then regular Medicare prescription coverage will start again. The good news is that the Affordable Care Act (Obamacare) removes this gap in coverage, but not fully until 2020. In the meantime this is a large expense for us and many other ALS patients. When I pick up prescriptions, the pharmacy staff generally points out that we are in the gap period and asks if I still want to pick it up. They must have people who opt out of medications for the remainder of the year when the Medicare prescription deductible is reset. A very tough situation to be in, but everyone has financial limitations.

Now before we get a bunch of really wonderful friends asking to send us money - we are ok. Patrick's plan always was to retire early, so he was a saver... not exactly what he had in mind, but it is allowing us to manage these costs. We're not rich, but I've seen others and we're doing ok. If you are feeling you'd like your $50 to make a difference to an ALS family, I can think of no other place, but to donate it to the Greater Sacramento ALS Association (here is the link to Team Timmons) - they provide the loan closet, caregiver grants, support and other services to ALS families. It is my understanding they are currently working on a grant to help patients make accessibility renovations to their home.

I'm not writing this blog to make a political statement nor do I have solutions for this inequality. Instead I'm just stating what I've seen, ALS is an expensive disease and money does impact quality of life for families. I feel grateful that we are able to manage, but I'm also acutely aware that there are others that live a much more challenged life because they just can't afford what they need. I'm having difficulty closing this blog because I want to leave you with a happy note or provide an answer to these issues, but alas I find I can't help you. 

Oh, we had a visit this past month from hundreds of goats that helped to remove the brush and dried plants in the neighboring wetlands - that was pretty awesome - so here is your happy note. See pictures below of the view from our front porch...

Goats are a very happy note!!

We love goats!

Get Out of Jail Free Card

I've decided that when you are handed major life events, you should also be granted a few "get out of jail free cards." You know just like in the Monopoly game where you can use the card to be "forgiven" and allowed to continue playing - not lose a turn. I've always liked the concept... it's sort of saying I'm going to take a pass on this one because I've got bigger fish to fry. I'm not sure how many a person should be granted, but at least a couple. I know you can't opt out of the big stuff in life, but the annoying, form filling, insurance challenges, bureaucratic stuff - we should all get to pass on some of this.

Last week, I took our disability van in to be smog checked. This is the first time since we purchased it a little over two years ago, that it required a smog certification. I went when the place first opened to miss the lines and get out quickly. However, I wound up waiting and waiting for word on my van. As you've probably guessed... it didn't pass smog. Apparently, the smog center was not familiar with the way in which the van modifications were made and some of the "smog device" items were moved. Although there was no emissions problems, he wasn't sure if the modifications were acceptable with the ARB (Air Resources Board). He tried calling the "Smog People" but was unable to get someone official to help him with his concerns. So, he returned it to me, said he couldn't approve it and told me to contact the DMV and get a referee to review my case. I'm now scheduled to meet with a "referee" in August to determine if the modifications are acceptable. We bought the van used about two years ago, it has been smogged at least two other times with the modifications, but on to a referee we go. This is where I started thinking about how nice it would be to just pull out a "get out of jail free card" from my back pocket and hand it to the smog guy - "hey, I'm going to pass this one."

Recently, J.T., a friend and ALS patient, posted on Facebook his complete exhaustion with filling out forms to prove he was disabled. I felt his pain, but what his FB post really did was remind me that I had a five page form to complete for the insurance disability folks. It took me the better part of an afternoon to complete the form. Here are a few of the questions they asked:

• Describe any change in your condition since you stopped working.
• List all medications, dosages and what your understanding of what they are taken for.
• Describe your activities during a typical day, emphasizing the extent of which there is any activity requiring physical or mental exertion or contact with others.

My personal favorite...

• How does your condition keep you from working right now? - be specific

Yeah, it's hard not to be a "smart ass" when answering these questions, but we need his disability to continue so we comply. On a side note, there are really decent folks in this world. Last year, when I completed this form, apparently they didn't receive it, even though I had faxed it. A very nice guy, Adam called and asked if we had received the form and if he could help to get it completed. I told him the fax must not of worked and I'd resend. He said fine and if they don't get it he would call back in a couple weeks. Honestly, I've never had an insurance company contact me to see if they "could help get a form completed," a bit above and beyond what is expected.

I think some of the hoops we jump through are just a bit ridiculous so that's where I think the card could be useful.  Recently, Patrick received a new piece of equipment, a cough assist. About two weeks after getting the equipment I got a call from the medical equipment company that they needed to take it back and give us a new one. Not because there was anything wrong with it, but because they didn't submit the appropriate paperwork to Medicare so they needed to deliver a new one. I asked them how long it would take to get the equipment replaced and if there was anything different about it I should know. The lady sort of skirted these questions, except to say we would get the new equipment immediately, after I asked a couple more times she finally confessed that the therapist would just pick it up and bring it right back... In other words take it out to his car and walk it back to my front door.  Nope, you can't make this stuff up.

I've been pondering this card quite a bit - who would be in charge of its distribution, guidelines, process, how many should you get and for what reasons, etc. and finally I decided we'd all have to fill out paperwork to actually gain access to the cards. That's when I realized, I'm just creating another bureaucracy so my fantasy world was shattered.  I guess I'll just have to manage without them.

Hope you are enjoying the summer! This week is absolutely beautiful. Here is a picture of Patrick and Caitlin reading on the porch...

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!