Have a Magical Day

Hurricane 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.

My ALS Caregiver

What can I say about the person who gives up their career and life to take care of me at the end of mine? Plenty! Is it all sunshine and roses? Of course not. Part of it is due to our own personalities and part of it is because of the difficulties associated with ALS. We don’t give up, but we occasionally want to strangle each other. So not much has changed in our relationship.

I know that every day this disease tugs at his heart and he has his own breakdown. I usually have my own non-PBA breakdowns at night lying in bed where I oftentimes work on this blog. This is our quiet time. I am supposed to go to sleep while hubby and caregiver retreats to the mancave for a cigar and to chill.

Our lives have taken a role reversal of sorts. I no longer have any chores. Meanwhile hubby has taken over as the laundress, a nickname he gave me because he would complain that I spent all my free time doing laundry. He no longer enjoys cooking, one of his passions, because he says it’s not fun to cook for one. And believe me, for an Italian that is an impossibility anyway. It used to be my job to clean up after dinner because I lost all cooking privileges the day I said, “I do.”

I believe that most of our disagreements or difficulties these days are due to my inability to speak. I still try to speak in this non-voice of mine which, I admit, is stupid on my part. It’s not easy to give up on one of those five senses you have had forever. And it’s really stupid for me to try to speak to my hubby now considering that he has had hearing loss since he was 14. My husband has told me that he would like to hear my natural voice. I spent almost two months on voice banking in order to have a synthesized voice that would sound like mine. Hubby cannot understand my voice on the Tobii (my speech device). With some tweaking it does, but clips off at the ends of some words. It sounded better on my MacBook which I had to give up. So I use a built-in voice that he can understand but complains is condescending. Argh! What am I supposed to do?

I am now on hospice and my husband is on an unpaid leave of absence from work. It’s almost as if we retired, except it’s a lot less fun for the both of us. We recently lost an aide so it means there is a lot more for him to do. We are working with hospice to get a regular routine going. I don’t want to be in bed all day waiting for a shower or bed bath. I haven’t become bedridden yet. I will die when my time comes. Until then, I’d prefer to enjoy the time I have left. But I digress.

My caregiver’s day begins earlier than mine. He gets up earlier to shower and eat breakfast. He tries to get a few moments for himself before I rock his world. The loss of one of our regular aides means everything is his responsibility that day. Our current nursing agency is having a difficult time finding a replacement. Every one wants or requires training for a job my husband was never trained to do. He laughs and tells everyone that I call him my untrained professional. .

After my feeding tube was put in, the surgeon gave my husband almost two whole minutes of training on how to use it. The aides cannot feed me because they are not trained. I use a trilogy machine when I sleep. I wear a mask that covers my nose and mouth. I do not have the ability to remove the mask. The aides are not permitted to do it. So my untrained professional does it before they arrive. I also have a cough assist and a suction machine that could save my life if I was choking. Again, the aides cannot use them. I need my untrained professional for that. Don’t get me wrong, I can get aides qualified to do these things, it just costs more. It is almost as if the government, state, local, or maybe even federal, prefers an able-bodied person to give up their career, income, and benefits to become an ALS caregiver. It’s either that or spend your life’s savings on a disease no one can treat let alone cure. And pray that you saved enough or have great medical insurance.

Sometime before or after hubby’s shower and breakfast, I get my breakfast in bed. Then I wait in bed and fall back asleep until it is time for my meds. We wait at least 15 minutes before attempting to get ready for the day. My husband uses a Hoyer lift to get me up and onto my shower chair. It sometimes takes a few attempts to be properly situated in the chair. I have my teeth brushed in the shower. It’s less messy that way. It kills me that I cannot brush my own teeth. The shower can be routine or full of tears; mine, in case you didn’t figure that out.

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Drying off is always an adventure. I feel every piece of hair that falls on my skin and want it off. Hubby can’t always see them and that’s another annoyance for me because I know I will feel them all day long. Hubby likes to say, “But it’s your hair so what difference does it make?”. The difference is that it feels like bugs crawling on me. Another gift from ALS.

We use the Hoyer from the shower chair to bed where, if I am lucky, some range of motion exercises will be performed. Otherwise it’s powder, lotions, eyedrops, etc. Then it’s time to get dressed. What works best for both of us these days are skirts. I buy skirts with elastic waistbands and they are easy to put on and take off over my head. About two to two and a half hours later we are both ready for our day and hopefully are not at each other’s throats. Sometimes we are exhausted by this time. Many days are spent at home just hanging around.

Recently I told my husband that instead of taking a mini vacation, I would rather have an aide to help both of us. I have tried forever to get a family vacation planned. There has always been a reneger or a reason why it couldn’t happen. Now ALS has assured it can never happen. It’s okay family, (the family who accepts me just the way I am because your son loves me), I love you anyway.

We are searching for an aide because it will bring back more of my husband and hopefully lessen his caregiver duties. We will continue to make memories here close to home. Love your ALS caregiver. Their lives are a mixture of sorrow and love, their love for you.

i love you, Joseph.

 

What I Want For Christmas

A common question this time of year is “What do you want for Christmas?”. As a person living with ALS (PALS), I have a simple wish. I want to be treated as a PALS.

Pass the meatloaf

The past week has been pretty full.  Getting ready for appointments can be exciting and fun.  It’s also tiring.  Last Sunday we gained an extra hour.  It felt great.  I got an extra hour of sleep and was able to make it to church after weeks of non-attendance.  I saw old friends and met some new ones.  But after just a short time out I was feeling tired.  I’m not sure if it was all the talking, change in medications, or just that old beast, ALS, but I just wanted to go home and vegetate.  My way of sneaking back home was to suggest that we grab a fast food meal to take home for dinner later.  Joe suggested we go out to dinner.  I reluctantly agreed.

You see, many people know that my husband Joe likes food.  He enjoys cooking and trying new foods.  I never really was a culinary adventurer until I met him.  A favorite phrase of his is Food is Love.  His suggestion turned out to be a good one for more reasons than just one.

We went to an Italian Restaurant.  It was one of the better Italian restaurants considering our locale.  The menu wasn’t designed to accommodate my idea of easy-to-eat foods while dining out so I was already planning to skip the appetizer.  Joe nudged me into revealing that the caprese salad really did interest me.  My fear of struggling to cut the tomatoes was gone when Joe agreed to eat the tomatoes leaving the mozzarella for me.

The tables were far enough apart to give us our own space.  Joe commanded most of the conversation since talking and eating are not my thing anymore.  ALS with its frustrating speech and swallowing problems can really help you become a better listener.  We enjoyed our meals.  We lingered over our meals.  His was espresso chili rubbed filet.  Mine was polpettone di carne or for us non-Italians,  Italian meatloaf with smoked mozzarella and fried parmesan polenta, also described as meatloaf made in heaven.  It remains a wonderful and tasty memory.

As it turned out, the meal was not the most important part of evening after all.  It did, however, make for an intimate dinner in a perfect atmosphere.  It helped transform the evening for me and was just what we needed.  My husband got a break from cooking and cleaning up.  I was able to take as much time as I needed to eat.  Gone was that tired feeing of earlier in the afternoon.  We spent time without wasting words.  We enjoyed each other’s company.  And those troublesome tomatoes tasted even better because they were fed to me by the man I love.

If you’re in the neighborhood of Cary, NC, I recommend the meatloaf at Lugano Ristorante.

P.S. The photo is not Lugano’s meatloaf.  Their presentation is indescribable and delicious.

Trick-or-Treat

Happy Halloween!  Tuesday was Halloween and the day I chose to follow-up at the ALS clinic.  I had also requested a speech evaluation and it wound up being that morning.  It was a full and exhausting day.  It was also fun and sobering as far as my journey with ALS is concerned.

I was up at a bleary-eyed 6 A.M.  After being helped with showering, dressing, and breakfast, we were off.  We were well aware that the ALS clinic would be filled with costumed medical personnel so we packed our costumes in the back of the van in anticipation of our afternoon appointment there.

First up was my 9:30 A.M. appointment at the Duke Speech Pathology Clinic.  We waited in reception for my name to be called along with costumed kids who were trick-or-treating while also waiting for their own appointments.  After a short wait, I was summoned to a small room in the back of the clinic to meet with the IT technician and speech pathologist along with their respective interns.  I handed over my email from Team Gleason¹ whom I had previously contacted for advice on speech technology.  The technician politely handed it over to his intern.  A minute or two into my evaluation it was apparent that this Duke team did not need any advice.

I practiced using eye tracking on three different devices.  Eye tracking measures the activity of your eyes and allows data to be collected from a computer screen allowing you to type hands free (eyetracking.com, 2011).  I found the different eyetracking devices easy to understand and use.  I guess I have my 30+ years working as an intellectual property legal assistant to thank for that.  I will be getting a speech device that will use a synthetic voice to speak for me.  Right now, I can still use my arms and hands but they want me to be proactive in learning how to use the eye tracking technology.  It will be 2-3 months before I get my own equipment.

At home, I have a MacBook Pro and I use the track pad.  I was told to practice using a mouse and an on-screen keyboard in advance of an in-home trial on the three devices.  (Of course, I just realized I am not following that advice as I type this.)  It seems that everything is about saving energy.  Using my fingers to type and edit takes energy that I need to save in order to avoid fatigue.  I can also learn how to use the technology to talk on the phone.  Unfortunately, I will most likely have to give up my iPhone.

Next up was a trip to the ALS clinic to meet with the research nurse prior to my quarterly follow-up visit.  On arrival at the ALS Clinic, my husband and I quickly donned our Mr. and Mrs. Potato Head apparel in the parking lot.  The friendly witch at the reception desk checked me in.  While the costume fun was just about to begin, the sobering wake-up call to the reality of ALS was hiding somewhere amongst the gaiety.

 

The ALS Clinic is multidisciplinary.  This means I don’t have to travel around to see the various members of the ALS team every time I need a follow-up.  They are all located at the clinic, and I have the convenience of having them come to see me and not the other way around.  I see so many people it’s hard to remember who I saw and what we did.  Thankfully, I have the benefit of an excellent caregiver who pays attention and knows what is going on.  Electronic medical records also help.  I can go home and log into Duke MyChart to download a copy of my visit summary.

The sobering part of the visit meant I left with information on a chopped diet and pureed foods along with information on feeding tubes.  Because my ability to chew and swallow food is becoming more difficult and my forced vital capacity (having to do with lung capacity and breathing level) is slowly decreasing, it is time to consider a feeding tube.  The tube is a proactive move and does not mean that I am dying.  It means that while I can still eat a lot of foods by mouth, it takes a long time and a lot of energy.  Ironically, the energy I get from the food is already burned while I’m eating.  That means I have no caloric intake.  The tube is meant to supplement meals.  The best part is I can save my energy with tube feedings and later eat fun stuff like ice cream or Italian food.

Staff at the ALS Multidisciplinary Clinic dressed to mimic the clinic’s director, Dr. Richard Bedlack (front center)

So in between visits by various costumed (Halloween vs. medical) garbed personnel, I also earned about oral hygiene (another problem), got my wheelchair adjusted, and discussed physical therapy.  There was probably some other important stuff I missed.  I can only thank God that between my doctor and my husband, someone is looking out for my well-being.  I’m too busy living to dwell on dying.  The trick is on you, ALS.

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¹Steve Gleason played professional football for The New Orleans Saints from 2000-2008.  He was diagnosed with ALS in 2011.  His foundation is a charitable 501(c)(3) non-profit corporation.

References

eyetracking.com (2011).  About Us: What is Eyetracking?  Retrieved November 4, 2017 from http://www.eyetracking.com/About-Us/What-Is-Eye-Tracking

Knockout Punch

I’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.

Fruit 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