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.

 

Knockout Punch

IMG_6493I’ve reached the full dose of my study medicine and it’s knocked me out.  At least I think that’s what it is.  You see, I’m working on a new daily schedule to help me handle the meds and ALS overall.  My weekends are always sleepy because hubby is a vampire and I try to stay on the same schedule so I can be with him.  I’ve tried to convince him that I’m like an infant who needs her rest.  I guess eating food with my hands, wearing bibs (photo), and taking forever to finish a meal haven’t been enough proof of my new baby-like status.  ALS has changed both of our lives so much, but we try to roll with the punches.

Diet changes that take getting used to include eliminating foods that are dry and get stuck in my throat easily or that are small and just roll right down my throat and cause me to choke or cough.  Water is one of the bad guys.  It just runs down my throat unless I try a chin-tuck swallow or use a thickener.  Stuff like potato chips or small hard candies fall into the foods-to-eliminate category.  Movie popcorn should fall into this category too, but it’s hard to imagine going to the movies and not having popcorn.  Eating popcorn requires concentration that I may not want to divert away from the movie screen.  I’m still trying to figure out a satisfactory substitution.  It may be time to shop in the baby food aisle and check out the snacks.

I also never realized how wonderful a hamburger on a bun could taste until now.  A bun-less burger is similar to watching a movie without popcorn.  It’s become a necessity to ask my husband to cut my burger into quarters.  Besides making it easier to chew, it is also easier to handle!  And that can be an added bonus.

IMG_6590Fruit and veggies fall into another important category and not just because your Mom always encouraged you to eat them, but because we all know that eating enough of them each day means you can spend less time in the bathroom.  (TMI?)  Unfortunately, even these good foods can be bad for me if I don’t cut them small enough.  I just ate my leftover Chinese food for lunch and my aide, who knows me well, served it to me diced up (see photo on left).  Same great taste, just a different appearance.

So my baby-like sleep schedule includes baby-like food:  smaller pieces, sippy cups or straws, applesauce and yogurt in squeeze packs, and overall better choices.  (I write this as I steal a piece of Halloween candy that will require much concentrated chewing.)  Chewing takes me a lot of time and effort.  ALS has not only messed with my voice, it has also messed with swallowing and friendly dinner conversation.  Oftentimes you will see the frustration in my face as I attempt to eat dinner and have a friendly conversation.  So if you plan to join me for a meal, please be prepared to bring the conversation with you.

 

Research without drugs

Recently I responded to an email from the ALS Association that requested volunteers to work with graduate students studying motor speech disorders.  Last week I met with four students from UNC in my home.  The students are studying speech irregularities in ALS patients.  The initial meeting was to get to know me and to learn my ALS story.  I was a little concerned that they would not be able to understand me even though they study speech disorders.  I played a couple of videos for the students so they could compare my voice in August 2016, April 2017, and currently.  We chatted for a while and then the students conducted some speech testing.  In addition to meeting at my home, there will be an in-class meeting where I will be joined by another PALS (person with ALS).  The two of us will take part in a panel discussion about our life experiences and communication issues relating to ALS.  Details of that meeting will follow.

I have also volunteered to work with a Duke student who is gathering photos for a project in her Documentary Studies class.  She hopes to show the side of ALS that only PALS and CALS (Caregivers of person with ALS) know.  She is accepting picture submissions and is also willing to visit PALS at home to take photos.  She was also looking for ALS patients willing to be photographed during a typical visit to the ALS clinic.  I volunteered and we will meet at my next clinic visit.  It should be interesting; my visit is scheduled for Halloween!

Segueing now to my personal ALS UPDATE, I can report that my arms are losing their flexibility.  It is hard to hold them over my head and it is becoming a challenge to cut some foods.  What about my hands, you ask?  Typing is pretty much the same – two hands on the keyboard, but it’s much slower.  Discrete finger movements are hard and I drop a lot of things.  Holding my electric toothbrush is OK but turning it on sometimes requires two fingers instead of just one.  Squeezing a tube of toothpaste is not always easy either.  Picking up a full glass of water is a tricky task and drinking with a straw is a necessity.

I stopped walking about 9 months ago.  My power wheelchair is my means of transport.  It gets me almost everywhere.  I was given a few exercises by my PT that I try to do more often than not.  The exercises are really for endurance because it’s not really possible to build strength.  And I am still fighting so that I can stand up and bear weight.  All things considered, I’m not feeling too bad.  I get tired faster and like to take naps.  One thing I will be working on in the near future is the Walk to Defeat ALS.

SAVE THE DATE
April 21, 2018

 

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