Have a Magical Day

Hurrica2018-bright-celebrate-230898ne Florence tried to screw with my bucket list. She caused the closure of Disney’s Hilton Head Resort. Related or unrelated to the trip, I had a PBA episode over communication issues so we drove back home ready to let ALS ruin another part of our lives. But instead of ruining the trip, Disney and our hospice representatives managed to move our trip up a few days and now I am comfortably situated in Disney’s Old Key West resort. Those lemons make for a great lemonade, thank you Disney and Duke Hospice for taking care of the big and small details.

We were able to make a short visit with friends from our former church in Hasbrouck Heights, NJ. My PBA kicked in so I didn’t have much fun and I couldn’t get in the house because as all PALs know, a flat entry is never really flat and no one wants to take off the door moulding trying to get in someone’s home.

I spent the first day hanging around the hotel. It’s harder for me to drive the wheelchair now, but we are looking at a possible solution. The second day was a great day. We met with some friends who relocated to Florida. Of course, we had to move inside because Tobii Dynavox does not work outside. Funny how that is is not part of the sales pitch.
Have any PALS come up with a solution for that?

Besides being able to visit with friends, the rest of the trip has been a nightmare for me. I am now stranded in Florida because part of I-95 have been shut down. This was supposed to be my Goodbye trip to Mickey and Minnie and it was not a memorable one. The trip was a nightmare that will not be repeated by me. I know that I should have stayed home. They say you should go with your gut feeling. I guess I should start listening to my gut and stop being so agreeable to other people’s idea of what is fun for me. I only have myself to blame for not being more forceful.

So the lesson to myself is just say no. I would prefer doing something else.

Hospice At Home

HomeHealthCareI thought about writing this blog post because I was asked what the difference was between a typical hospice where you are an inpatient and home hospice. Having had no experience with the typical inpatient setting there is not much I can say about it. I did, however, visit two traditional hospices in my area not too long ago to check them out in order to give my husband a brief respite. This is what I discovered.

The first hospice was the Hock Family Pavilion run by Duke University Health Systems. It was not easy from the outside to recognize it as a hospice. The outside looked like an older style home setting in Durham. I liked that it was set back quite a bit from the main road. When my husband and I visited, we did so without an appointment. We were greeted by a volunteer who was sitting at the front desk. She took us to see a typical patient’s room which was vacant. I immediately fell in love with the soothing yellow color scheme. The sun was shining through the window which gave me a welcoming and homey feeling. The room was large and had a sofa for visitors. The bathroom/shower area looked like it would be a tight fit for bathing with an aide. The room we were shown happened to be located adjacent the nurses’ station. A nurse was summoned and she readily answered all of our questions.

The downside to the Hock Family Pavilion is that you cannot schedule your stay. The facility only has 12 rooms available for patients. There is a waiting list for the five-day respite period. You literally are called the day before a room becomes available. I found a video on YouTube that I feel gives a good depiction of the Hock Family Pavilion and you can view it by clicking here

The second hospice we visited that day was located in Raleigh, a bit further from my home. This facility was run by Transitions Lifecare. We had used Transitions when I received palliative care. Their services at that time were excellent.

When we arrived at the Transitions facility there was no one at the front desk to greet us when we arrived. After a while a volunteer coordinator showed up and she took us back to see a room. As I passed through the door separating the front entrance area from the rest of the facility, that little voice in my head was shouting nursing home.  The only difference was that unlike other nursing homes I have been in, there were no patients out in the hallways. But this was a hospice so I would presume that patients do not typically congregate in the hallways. There was a huge nursing station which appeared to be the hub for the three or four hallways jutting out from the station.

The room we were shown depressed me. It was dark without a speck of sunlight to brighten up the room. Perhaps a twist of the window shade might have made a huge difference, but the volunteer did not make a move to do so. There was no one else associated with the facility who was available to speak to us at that time and the volunteer was unable to answer many of our questions. I was not motivated to spend any time in their facility. I was not able to find a video depicting the inside of the facility that would be equivalent to the Hock video.

Hospice at home is the other side of the coin toss. Reading comments on Facebook, it appears that not everyone has the same in-home experience. But this is my blog, so, it will be my experience you read about.

While both facilities seemed competent, my husband and I decided to go with Duke Home and Hospice for reasons of our own which included the fact that they cover most of my medications, work closely with the Duke ALS Clinic, have personnel with actual experience with persons living with ALS (PALS), use the durable medical equipment company and therapist that is at the clinic, and will defer to my doctor on all decisions that deal with my ALS. There was no chance that I would be willing to give up my doctor, a man who has dedicated his entire career to me! (I like to believe that is true, but, in fact, his career in neurology has been devoted to ALS.)

Hospice at home means that I can see a second medical team devoted to me. I can also travel to the ALS Clinic for quarterly appointments as long as I am able to do so. I have a nurse manager who visits weekly and oversees the care I receive. I also have hospice aides who assist with bathing or range of motion exercises to keep my joints from freezing up. Other pluses are that there is a hospice chaplain, social worker, and volunteer whose services I can also utilize. Of course, bereavement services are available as well.

My volunteer is wonderful and I always feel better when she is here. She has a cheerful disposition and leaves me feeling better. Right now we are sorting through photos for my memorial video. If I don’t feel up to the task, we watch TV (we like the same shows!) or do something else.

The social worker helps find resources for the things I want to do while I still can. No matter if it is selling jewelry or planning a trip, she always finds an answer for me.

Now do not misunderstand me, when we initially made our decision to go with the Duke Hospice we had a tough time getting the administration to work with us. We were receiving phone calls for all kinds of services, but we had a difficult time getting a nurse manager assigned to me. My husband finally worked it out. The nurse who was ultimately assigned is very caring and professional. Don’t get me wrong, the nurses I saw previously were equally as competent, caring and professional, but the first had handed in her resignation two weeks earlier, the second had no ALS experience, and the third was an intake nurse and had not been involved with patient care for quite some time. We have not been able to figure out how to get the hospice aides here before noontime, so once a week I have a long morning in bed. It works out okay unless I have to be somewhere that day.

To sum it all up, hospice at home can work for you if you have the right caregiver at home. My husband is my caregiver, best friend and ALS advocate. We are not perfect, and my husband deals with a lot of ALS bullshit, especially because of my issue with pseudo-bulbar affect (PBA). But he’s still here. We do not like the idea that we were given an estimate of six months left for me. That six months could come right on time to coincidence with the holidays. So in the meantime, we deal with the Beast the best we can. We hope to soar past the end of 2018.

Before and After

In my life before ALS I tried to lose weight and get in shape many times over. I succeeded once or twice. I had a closet full of clothes in several sizes. I would never wear sleeveless blouses or dresses because I felt that my arms were not in shape. Eventually I always fell back to bad habits. I always wanted to partner with someone so we could inspire each other to stick to our goals. That didn’t work either. You have to travel that decision-making road on your own.

I finally made the decision to focus on myself when I registered at North Carolina Central University (NCCU) to finish college and earn a bachelor’s degree. It had been a 17-year stretch to earn my associate’s degree between deciding on a course of study, having a baby, and a former spouse who proclaimed that my GPA was only good because I took easy classes. He would tell me that I would only get a degree in basket weaving. This was meant as an insult because I am sure he has no idea how difficult it must be to weave a strong, sturdy, and practical basket.

I enjoyed the work of being a legal secretary, but I knew I was never going to move from a secretarial position without a degree. I have trained many people over the years, some had college degrees, but you would never know it. (I was once asked by a Harvard graduate and lawyer how to get a money order. I guess that they don’t teach life skills at Harvard.)

I knew that I was training people who would move on and over me because they put in their four years at college. It didn’t even matter what degree they earned, only that they had one. In my heart I felt that very few managers appreciated my work ethic (could such a thing exist in a lowly staff person?). Many years into my career, my job title changed from legal secretary to legal administrative assistant. This is a glorified title handed down from management. It obviously meant something to them, but nothing changed in my job description. The bigger the firm, the bigger the politics. The ratio of one-to-one is long gone. It is now at the very least one secretary/assistant to 5+ professionals, no matter the workload. It looks good on paper.

I was always watching shows about the law. I always found it interesting, and I had a cynical belief that the best lawyer always won. I hoped that I could make a difference and help bring justice into the criminal justice system. But I had spent almost my entire career working in intellectual property and changing to a different area of the law would most likely downgrade my career and salary just like it does when the job location moves from city to suburb.

So in 2012, shortly after moving to North Carolina, I searched for a college that offered a degree program that would be interesting and engaging. I found NCCU with a criminal justice program that had a concentration in homeland security. I took most classes online because I worked full-time. When I did show up to take the occasional class on campus, it was usually assumed that I was a parent or professor. It took me 4 years to finish. Right at the end of my studies, with 3 classes left, I received my diagnosis. I immediately signed up as a student with a disability. ALS was not going to stop me now! It was hard and things took me longer, but she persisted. 

Up until the time of my diagnosis, I was able to complete medical questionnaires by checking NO to all those boxes pertaining to medical history and medications. I didn’t have any condition requiring medication. I was, however, grossly overweight. The plan was to focus on the weight once I graduated. Then I would look for a job in a local or federal government Department of Homeland Security in Florida. ALS changed all that.

Now in my after life I am a pharmacist’s dream. I have so many medications that I gave up trying to keep track. Riluzole I mentioned previously. I now need to take Eliquis daily due to the blood clots that formed in my leg and chest from not being able to move. I need stool softeners and laxatives for the same reason. I finally agreed to a prescription for pain in my joints. The first one I tried appeared to be giving me a rash so we had to switch it out. I can take acetaminophen for minor things like a headache. I definitely need my nuedexta and Valium to control my pseudo-bulbar affect (PBA). I never was a weepy or emotional person before, and I was not easily excitable. Now I have PBA and tears come easily. There are a bunch of lotions and powder that I use. I have sensitive skin so that only adds to the chaos. It seems like every week I get some new medication. I let my husband manage it all.

Life now is coming to an end. I hope that I am ready. I went on hospice to make things easier. So far, hospice has made things more frustrating because they can’t seem to get their act together. I am not a fan of waiting until afternoon to shower and dress, unless it is my choice and I was able to do it myself. Before ALS I could pretty much do as I pleased.

Now everything is on someone else’s schedule.  Even food and medications have to be planned out. My life before ALS was definitely better, but did I ever think about it? I never gave it much thought. I had work and a family to think about.  I suggest you make your before life the best it can be, because if you think life is frustrating, don’t even think about dying!

The Truth

 

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Photo by Pixabay on Pexels.com

I receive a lot of compliments from people who say that I inspire them even though I have ALS, a progressive, incurable, untreatable, and fatal disease. The truth is, I don’t know how to inspire anyone, not even myself.

Come find me on a day when I am angry or my PBA is in full swing. I am not very inspiring on those days. There are days when I just give up or give in because I cannot communicate. Today I gave up trying to communicate to my caregiver that I felt uncomfortable with the way I was positioned in my wheelchair. Someone who can move and wriggle their butt into a comfortable position may not recognize how painful it is to be sitting lopsided with all of your body weight on one side.

I often sit silent because it is too much effort to type with my eyes. Sure there are phrases stored in my device that can quickly allow me to say something, but is it witty, thoughtful, or inspiring? It takes time to get a thoughtful statement typed out correctly with your eyes. Or maybe I am just not proficient in eye-gaze yet. When I am revved up and halfway through my comments, the conversation has usually moved on. If I decide I want to get my voice heard any way, I’m usually interrupting a conversation that has progressed to a different topic.

Truth be told, I am really irked by being asked questions that require more than a yes or no response when I don’t have my speech device. I cannot grasp a pen to write, and I cannot hold my cell phone or type on the tiny keyboard. My husband is hard of hearing and hearing aids do not help him to understand my garbled speech. No one can understand it, but that doesn’t stop me from trying. When I am really frustrated, I do what babies do, I cry. The only difference is no one picks me up, pats me on the back, and cuddles me. Which is probably a good thing because I would probably cry more.

Worst of all is that everyone else sucks at charades. They may get a clue to one word I am saying which I acknowledge, but then the rest of the their guesses are completely disconnected and off the wall. The truth is that this annoys the crap out of me. It shouldn’t, but it does. I mean after all, I know what I am saying, why not everyone else? Okay I am kidding, but it is so very frustrating. It’s like watching Judge Judy, being sworn to tell the truth, and then not being allowed to tell your story.

It’s true that I hate that I cannot get others to understand the idiosyncrasies of the disease, the itching, the burning, the feeling that bugs are crawling on my skin, and the constant need for assistance. I really can’t deal with losing the use of my hands and arms. My right arm is practically useless. It is becoming difficult to operate my wheelchair because I cannot move my hand onto the controls. I wish I could clean my own eyes and scratch my own itches, brush my teeth, comb my hair, put on my eyeglasses and earrings, and wear my wedding ring again.

The truth is that that I have come to hate ALS more than I ever thought I would. Naively, I thought it was something I could deal with. I handled not being able to walk. I got a pimped out pink power wheelchair to raise ALS awareness. I handled the eating and swallowing problem with a feeding tube. I don’t really have cravings for particular foods, and the government buys me my meals. They are like MREs (meals ready to eat). After all, I am in combat against a formidable enemy. But the fact is that ALS is stealing my life. It is hitting hard at my steely exterior. Truthfully, there are days that ALS sneaks in through its friend PBA to ruin a perfectly good day. Distractions can help keep it at bay.

I will keep on telling you the truth about this disease. I only ask that you listen, learn, and educate others. Every 90 seconds someone is diagnosed with ALS while another PALS dies. Spread the truth and help cure ALS.

I’m Sorry

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Remember that movie with Ryan O’Neal and Ali MacGraw?  You know the one with that memorable line, “Love means never having to say you’re sorry.”?  Okay, all us old-timers know it’s Love Story.  Well, that memorable line has become my life.

 

My numero uno caregiver and husband Joe has told me numerous times to stop apologizing for things.  He understands a lot of things about ALS.  He understands about the things I say out of frustration, the things I drop and can’t pick up, and the things I can’t do anymore.  I know my own frustration dealing with those things and can only imagine his.  I feel the need to say “I’m sorry” when those things happen.  He’s sick of hearing it.  He tells me there’s no need to say it over and over.  He attributes those things to the beast of ALS.  It hurts both of us and I wish it would stop.

030e7d1a7cbb0df18b5f392fab32d0b8It’s hard to stop those things you have no control over.  Even the funny things that happen between us are hard to stop.  We watch TV, him without hearing aids at times and me with my wonky speech all the time.  When he doesn’t hear what has been said he asks me.  Me?  Really?  I think wonky speech should eliminate me from repeating someone’s lines.  After all, the other night at dinner it took me four attempts to get him to understand one word.  Eventually I wrote it down but even that took two attempts before Joe understood me.  It seems that my hands weren’t in good shape either that night.  But who else is there to ask?

Funny noises, some old and many new, come out of me now.  Those are definitely non-stoppable.  Some noises worry Joe and some are definitely laughable.  You know someone really loves you when they accept all your foibles.  I always tell him not to concern himself with the worrisome noises because I will find a way to alert him to a potential problem.  It is the laughable noises and comments that are more worrisome to me.

Because I have pseudobulbar affect (PBA) along with the ALS, I can’t always stop laughing.  People often tell us that we are funny together.  It’s nice to know that other people think we get along and enjoy each other’s company (we do!).

 

I think we are becoming somewhat of a comedy routine.  We have to live with this beast.  A good laugh is thought to be better than a long crying session, but is it?  Laughing can last a long time and, believe it or not, it can, and oftentimes does, turn into crying.  I don’t cry to stop the laughing, I cry because I can’t stop the laughing.  At least that’s what my messed-up emotions are telling me as I struggle to change the thoughts that pop into my head at those times.

You might wonder what the big deal is with laughing or crying once in a while.  Why not just continue and let loose?  Well most importantly it’s because it’s hard to catch my breath.  That’s the worrisome part I mentioned.  Joe has learned that it’s best to leave me alone (usually) during these spells.  He doesn’t want to do something that will contribute to it.  Other people don’t always understand about PBA and sometimes try to console me.  I find that consolation only exacerbates my crying.  Please be aware that if I hold up my hand it may look as if I am annoyed and I’m pushing you away, but I’m really just alerting you to the fact that I need to catch my breath and try to stop the tears.

There are so many aspects of ALS that are unknown and misunderstood.  It’s a unique learning experience for PALS and their caregivers.  Those of us with an intimate knowledge of ALS and its symptoms search for understanding and acceptance.  We know you love us.  And even if we don’t say it, we are sorry.

 

Need a good laugh?

I take the drug Nuedexta for PseudoBulbar Affect (PBA) which is a condition that can be caused by ALS, a neurologic disease.  In January I had just started on a new prescription plan that lowered the cost of my ALS medicine from $365/mo. to $40/mo.  It was about the same time that I felt I was suffering from PBA.  PBA is “a medical condition that causes involuntary, sudden, and frequent episodes of crying and/or laughing in people living with certain neurologic conditions or brain injury” (Nuedexta, Sept. 29, 2017).

I’m pretty sure that I had first heard about PBA at the ALS clinic, but I also saw the TV commercials featuring Danny Glover (view here).  My husband was the frequent victim of my uncontrollable emotional outbursts.  It wasn’t fair to inflict my crying episodes on him and even the laughing episodes were a problem.  Laughing delayed a few dinners.  It certainly held up getting ready for bed.  We weren’t able to share jokes at bedtime anymore.  To my thinking the uncontrollable laughing gave the appearance that I was laughing at him and not with him.  It made the unfairness of ALS more unfair.

It was six months since my diagnosis and I had enough dealing with the constant changes brought on by ALS.  I decided I wanted to try Nuedexta, a medication that is supposed to “help reduce PBA episodes of sudden, frequent, uncontrollable crying and/or laughing that doesn’t match how you feel” (Nuedexta, Oct. 1, 2017).

So at my clinic visit in January I told my doctor about my symptoms.  I was given a prescription.  My comfortable $40/mo. co-pay jumped up an additional $385!  We’ve all heard the expression fighting fire with fire.  ALS medication is similar.  It’s fighting unfairness with unfairness.

References

iSpot.tv.  (n.d.)  PBA facts TV commercial, ‘Learn More’ featuring Danny Glover.  Retrieved from https://www.ispot.tv/ad/7XH_/pba-facts-learn-more-featuring-danny-glover

nuedexta.  (n.d.).  How NUEDEXTA can help.  Retrieved October 1, 2017 from https://www.nuedexta.com/treating-pba/how-nuedexta-can-help

nuedexta.  (n.d.).  Safety and side effects.  Retrieved September 29, 2017 from https://www.nuedexta.com/treating-pba/safety-side-effects