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!

How is Patrick Doing, #8? Part II - Mobility, Spacisity and Marijuana

Part II of "How is Patrick doing?" is primarily about our experience with obtaining cannabis to use for some specific symptoms. The symptoms we are trying to manage are anxiety, spasticity and clonus (tremors). Not all patients develop spasticity and clonus (tremors), but they are an ongoing battle for Patrick. We've tried conventional medication, but it just isn't working so we've entered the world of medical marijuana. Marijuana is common topic with ALS patients and we find that many patients use it to combat a variety of symptoms. There are even theories that marijuana slows the progression of ALS.

Marijuana conjures up a lot of images for me. I've talked with people that feel strongly that marijuana can help everything from Alzheimer's to the common cold and on the flip side there are those that think its just a hallucinogenic used by "pot heads." At this point I don't think I would take either of these sides, my suspicion is the truth is somewhere in between. 

Marijuana, Dispensaries and 420 Doctors
Spasticity causes a stiffness in the muscle making it near impossible to relax. For Patrick this happens in his legs, often during high stress times, which further exasperates the moment. Lately, this spasticity is accompanied by tremors (involuntary movement of the legs up and down) together these are a nasty set of symptoms. Recently, this occurred during a transfer which made for a very unsafe moment. 

Patrick has been taking a medication to help control the spasticity, but it just hasn't worked. So, we are looking at the use of medical marijuana, it comes highly recommended for this type of symptom management. We spent the last couple days navigating the world of legal cannabis in California. We started with getting a written recommendation from Patrick's neurologist for the use of marijuana. I wouldn't call the recommendation a "prescription," its just a document that the doctor states why the cannabis is going to be used. 

We, in our naive thinking, took the "recommendation" down to a dispensary, you know like when you get a prescription you head down to the pharmacy. We found out quickly that medical marijuana is a little different. Upon arrival at the dispensary there was a security guard at the door, he immediately told us that the patient must go in alone since we didn't have a "caregiver approval form." This caught me a bit off guard and I tried to explain how difficult that would be for him. The security guard was nice and he explained that although he understood our concern, this is California law. I think at this point he realized that we had no idea what we were doing... So, he asked if we had our approval letter or ID for marijuana purchase. I showed him the recommendation and he said you need to visit a 420 doctor to get an ID.  He gave us the name and a coupon and we headed out on the next leg of the journey.

A funny side note... years back when the grandsons were little, they were sitting in my kitchen having a snack. I asked Anthony, who was in kindergarten at the time, how he felt about Christian, his younger brother, going to preschool. His entire face showed disgust, he looked at me and said "grandma, look at him, just look at him, he can't go to preschool." I looked over at Christian, his face was full of cupcake and he had the biggest goofiest grin. This line of Anthony's has become an ongoing joke with Patrick and I.  So, when we got back in the van Patrick looked at me and said, "look at me grandma, do I look like someone who can go into a Marijuana store alone?" He did make me chuckle.

We got to the 420 doctor and headed in to see about getting the ID. Now, to say there are interesting folks in this place is an understatement. Just to prove my point I'm including

The van parked next to us...

The zombie in the front seat

photos of the van parked across from us. I did a double take when I saw this guy in the window. No, he's not real but I figured out pretty quick that the dude in the backseat was...

I was a bit irritated going in because the handicap spot leads to a sidewalk that wasn't safe for a wheelchair. I don't think that enough energy is put on making sure that disabled people have a clear route into buildings - not just a handicap spot, but a pathway without large bumps, unlevel thresholds and cracks. I pointed out my concern to the clerk who I believe filed it pretty quickly, under "I don't really care." Yes, this just added to my irritation. After hearing about the wait time, we opted for putting in for an appointment the next day, 1-2 hour wait didn't appeal to us.

So, that ended day one... a bit more educated but not accomplishing much. Day two we headed down to our appointment, decided to park on the opposite side of the building eliminating the bumpy sidewalk but not the threshold issue. Because we had an appointment the wait was shorter and within a hour we were meeting with the doctor. Many of the complaints on Yelp for this particular place were that the doctor didn't spend enough time with folks. That was not our experience, the doctor explained the different methods of ingesting marijuana, what he recommended for Patrick and how to measure using the different types. He was quite informative. He couldn't recommend a dispensary but he did say that if you call the place and they answer "Hey" - that's not the place for you. That was kind of funny. 

So we left the doctor with approval in hand and a caregiver ID. We went to the nearby dispensary to see about getting some medication. The guard let us both in with our approval letters. The dispensary was an interesting place, you go into a wait room and they call you back to the "store," I think that's what I'll call it. The person that helped us was a young girl with very little knowledge about what we needed. There are different ingredients in marijuana that provide different benefits depending on your ailment. I guess I thought it would be more like a pharmacy with a pharmacist to help you with medication. Additionally, I assumed that there would be a standard amount or recommended dose. Nope, you really have to do research and even then you start with a low dosage and see how your body reacts. It's all very different than the usual prescription process. 

The store was fascinating although a bit overwhelming. They sell all kinds of stuff filled with marijuana; soda, candy, tortilla chips, oils, salves, etc etc. Fortunately, the ALS clinic and the doctor we met were in agreement on what we needed so we bought a tincture which is an oil you you drop into a beverage.  

I cannot tell you how strange I feel buying marijuana, my images of potheads, getting the munchies and bongs. Yes, I think there are people who use marijuana for legitimate use, but equally I think there are "potheads" in the world. At least, I sure did see a variety of folks the last couple days.

So, we are back from our travels and preparing to use the tincture of marijuana that we got. I'll keep you posted on how well it works, I'm hopeful. We really need to combat these issues of spasticity and tremors, so if it works I'll happily journey back to the dispensary, although I think perhaps a different one, one that doesn't answer the phone "hey.":)

Mobility Issues Continue 
At this point Patrick can no longer do any type of ambulatory movement. He can be pulled into a standing position but his balance is not good and he needs a walker and his chair immediately behind him. This allows for dressing, and going to the bathroom. This is a tremendous help and I'm not looking forward to him not being able to stand. He continues to to control his wheelchair by moving his arm to guide the chair forward/back and turn however, this is becoming more labored. The next step will be for an attendant (Me:)) to control the wheelchair movement. I don't think he's looking forward to this, especially because I've not proven to be very good at driving his chair. Ah, well he's stuck with me...

The lack of mobility creates many related issues: blood clots, constipation and muscle apathy. Movement truly keeps the body healthy and without it creates problems. I know that when I sit for long periods of time my body gets achy and stiff (yeah, I'm feeling my age), so if you sit all day there are bound to be problems. We do physical therapy each night with his arms and hands this helps to combat them becoming stiff and curled. I roll him over from back to side each night to eliminate him laying in one place all night. So we do our best to address issues but there is only so much that can be done.

Three Years...
December marked three years from the date of diagnosis. The progression for us is difficult to measure. We don't see changes every day or every week - it is a much slower decline. However, we know the progression continues and when I read back on the blog posts "How is Patrick Doing" I reflect on the challenges at that time and some seem oh so distant. I've often wondered how we've got here, but I venture clear of the where are we headed as best I can. 

Life continues and time marches on... we will do our best to meet the challenges that come. I'll leave you with a couple photos from the past month...

One of Jake's Favorite Spots

At Farrell's Ice Cream Parlor

All the best to you and yours! 

Susan

Patrick and Susan

This past week, fellow ALS journeyer Susan Catlett passed away. Her passing hit Patrick and I hard. It wasn't unexpected but it never seems to lessen the blow, frankly loss is loss. Susan and her husband Cliff, were two of the first people we met at ALS support group three years ago. They welcomed us into our new "ALS family" and over the past few years we developed a friendship started by an awful diagnosis, a reminder that in all things there are silver linings. Susan and Patrick were the first two ALS patients on the Sacramento ALS Association Board of Directors, bringing a patient perspective to the board and being the voice of ALS patients.

Susan Catlett was courageous and I don't use this term lightly. I've heard people say "oh she is so courageous, she has a terminal disease." I don't believe a person is courageous because they get a disease, I'll take this a step further and say I've met people with serious diseases that I don't find courageous. It's how you chose to manage having the disease that makes a person courageous not the other way around. 

Susan Catlett took an awful diagnosis and did what she does best, treated it as an opportunity to educate others. She was a teacher all her life so after being diagnosed she began blogging her thoughts and experiences on living with ALS (www.susanssteps.com). What I truly admired was her honesty, she didn't sugar coat it. If she had a "sad day" she wrote a blog on having a sad day. She talked about the physical challenges, remaining positive and finding purpose with ALS. She continued to inspire, educate and draw awareness to what is truly "an orphan disease." In addition to the blog, Susan spent time sharing her experiences with interns at UC Davis and various church congregations throughout the area. She was an inspiration to many people and a tireless advocate for ALS awareness.

I have no doubt that Susan will continue to inspire those she left behind.  A 100 years from now someone will be reading her blog and think "what a courageous woman." I'm also hopeful they will be thinking "I'm so glad they cured ALS." Farewell Susan, dance with the angels, walk on strong legs and watch over Cliff from above. Patrick and I are honored to have known you.