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...