The Transformers

300px-PrimeBeeAs time goes by I feel more and more as if my daily existence is machine dependent.  I am not talking about the usual home appliances.  I am referring to the multitude of equipment that an ALS patient relies on to make their life comfortable and livable.

Since my last post two weeks ago, I have been inundated with appointments.  One of the first was with EMS who arrived to help get me off the floor when I slid out of my lift chair.  I know, not exactly a planned appointment.  I had a new aide filling in for the day who wasn’t familiar with my routine.  I wasn’t hurt, but it did take quite a while for EMS to arrive which was disconcerting.  I was very surprised to learn that the paramedics are not trained on how to use a Hoyer lift.  My aide, however, was able to instruct them and they all worked together.

This incident has made me even more impatient waiting for occupational therapy (OT) to arrive.  You see, it’s time to give the hospital bed another try.  We’ve already dismantled our guest room to accommodate some furniture that will need to be moved out of the master bedroom.  The electric hospital bed is coming back into my life because I have become weaker.  The electric Hoyer will help get me into bed and the occupational therapist will be our instructor.  Then the battle to get comfortable will begin anew.  It’s a real challenge keeping ahead of the constant changes that are the life of a person living with ALS (PALS).

So, in addition to the electric hospital bed and lift, I had a visit from my durable medical equipment supplier who brought me a Trilogy machine and a cough assist machine.  You may be familiar with the terms CPAP and BiPAP.  Trilogy is similar to a BiPAP machine.  It helps with respiratory issues.  In my case it will help inflate my lungs and perhaps increase my lung capacity, but it will also help me get rid of the carbon dioxide that I cannot expel on my own.  It is difficult to expel carbon dioxide when the respiratory system is compromised by ALS.  Too much carbon dioxide can kill me.  It is also one reason why I keep an ALS alert sheet hanging in my kitchen.  It alerts EMS not to give me 100% oxygen.  I found this information at the site www.alsemergency.info and ran it by my doctor before posting.  Now both my husband and I are masked sleepers.

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The end of the month brought the much-awaited speech device, a Tobii Dynavox.  The Tobii uses eye-tracking so I can type and surf the internet hands free.  There were a few hiccups with the delivery like missing mounting poles for my wheelchair and several attempts to retrieve via email the information to unlock Windows.  But all is good and the sales rep is affixing the mounting bracket as I type this.

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I will be spending a lot of time getting up to speed typing by eye and learning Windows again.  Ugh!  All I need now is an appointment-free day, week or month.

In the days that followed Tobii’s arrival, I saw a palliative care nurse practitioner and had a physical therapy (PT) intake visit.  I’m already scheduled for PT twice this week.  My life and home are in shambles.  I have boxes everywhere (empty device boxes, liquid formula boxes), an empty guest room, dust bunnies.  Well, you get the idea.  OT where are you?  I need you so that decisions can be made about where to put everything.  It was very difficult to move to a smaller home just to accommodate ALS.  Adding more stuff to the mix does not help.  Being a little bit of a neat freak (which I didn’t think I was, but have been accused of being), all of this drives me nuts.

The transformation to a machine-filled ALS life began with a power wheelchair.  Now it has expanded to include the Amazon Alexa to turn on and off lights and other cool stuff, a Ring doorbell, cough assist and Trilogy machines, a suction machine, an electric Hoyer lift, electric hospital bed, and my speech device, the Tobii Dynavox.  Half of these machines I am not able to operate alone or unaided.  I thank God every day for the assistance of able and caring people who transform my life into a comfortable existence.

My ALS Prison

Just as I knew it would, ALS has become my warden. Can’t go out, it’s too cold. Can’t call a friend, they don’t understand my speech. Hell, no one does. I can’t even complain out loud.

I sit in my wheelchair watching the disarray around me. There are Christmas decorations to be put away. Coats to be hung. Laundry to fold. None of these are on my bucket list. In fact, there’s no point to a bucket list because I can’t write it or accomplish it from here.

Every aspect of my life is dictated to me by the ALS that holds me prisoner. I used to feel sorry for a cousin whose Dad would constantly ask her to fetch him things while he sat in his easy chair. Now I’m that uncle. Even though I can get around most of the house, I usually cannot reach the items I need. One misplaced piece of furniture can ruin my best laid plans. And if an item is moved from its usual spot, I can spend the good part of a hour searching for it before I give up.

Visiting hours too will soon be on a well-orchestrated ALS lockdown. The need for a nighttime aide to get me ready and into bed will see to that. But in truth, visitors are rare.

ALS takes control of caregivers too. It is a hard disease to manage because it constantly changes its modus operandi. Tuesday’s clinic visit was exceptionally hard on both my husband and myself. My forced vital capacity fell another 10 points. We met with the pulmonologist who ordered a Trilogy machine to help fully inflate my lungs at night and a Cough Assist machine to help clear out built up mucus. The worst was yet to come.

Listening while the doctor explained a tracheotomy and ventilator was a real depressant. Although I asked for the information, my PBA kicked in so she had to stop several times. Now armed with the information it is clear that it is something I will not do. Even though it could extend my life by two years, what kind of life would it be? It requires 24-hour care which few people can afford. So when my time comes to an end, I will go peacefully to sleep. I will die in the general population rather than live a life of solitary confinement.

Life with a feeding tube

imagesSome of you reading this post may have a feeding tube, but I’m betting that most of you do not.  Three weeks ago I went for surgery to have a G-tube inserted.  It required an endoscope down my throat to locate my stomach.  I thought that would be the worst of it. Turns out that was the painless part.

We arrived at 10 am for a noontime surgery.  This was only my second surgery.  The first was 1962 for a tonsillectomy.  The waiting room for surgery stretched out the length of a football field.  I was not optimistic about getting in on time.  Of course, I was mistaken. The whole process ran like a well-oiled machine.

First I met the nurses and importantly the hoyer lift expert who got me from wheelchair to hospital bed.  I met two doctors on my surgical team and then about five minutes before noon the surgeon came to greet me.  I was taken into the operating room (it’s big!) and they explained a few things to me, including that they were restraining my arms.  A bite block was inserted into my mouth for the endoscope and soon I was knocked out.  The doctor, true to his word, paged my husband 15 minutes later and told him the procedure was done.

I woke up to pain and a new body part — a flexible tube from my stomach which exited under my left breast.  This was definitely not the optimal location I was hoping for.  The pain was pretty bad and I asked for pain medication three times.  Someone told me it was comparable to be stabbed in the stomach.  Duh!  I was miserable for a week.  Now and then I took over-the-counter pain relievers.  At night I had stomach spasms which woke me up.  I constantly complained that I thought the tube was too tight.  I joined a group on Facebook for people with feeding tubes to learn about their experiences.  Finally, eight days later I returned for a follow-up visit with the surgeon.  I was ready to tell him this was the worst pain I have had to date with ALS.  I was not a happy camper and I had some questions for the doctor.  Fortunately, my husband and my inability to speak coherently prevented a verbal assault on the doctor.  Of course ALS is the culprit, it has ruined my ability to eat and swallow.

Once the stitches were out and the tube loosened a bit, I returned home.  The spasms abated to just one or two.  I was overjoyed because I thought that waking up in pain was going to be my new reality.  By the second night, the spasms were gone.  I spent the first few days trying to figure out what to do with this new dangling appendage.  It felt itchy and bothersome at the site.  Now, almost a month later it doesn’t really bother me.  It’s just there.  I don’t use it for feedings except an occasional Boost or Ensure when we are in a rush. The feedings work by gravity, no pumping needed.

So why did I get the tube if I don’t use it?  It was because with ALS my forced vital capacity (lung capacity and breathing level) is slowly decreasing.  If it fell below a certain level, the surgeon would not perform the surgery.  If I wanted nutrition, I needed to do it now.  So it was a proactive decision.

I tuck this new appendage into a feeding tube belt I wear over a man’s tank t-shirt.  The t-shirt helps my sensitive skin from being bothered.  I’m working up to putting on a bra again.  I don’t know if the tube placement will allow it.  So at present the surgery has made me a bra-less rebel.  I guess I can live with that.

Tomorrow

alg-annie-comic-jpgTomorrow will be another new beginning in my ALS journey.  I will be getting a feeding tube.  The PEG procedure is only supposed to last 15 minutes.  I’ve heard from people who have them and it doesn’t seem to be a big deal.  I think I am looking forward to it in some ways.

PEG stands for percutaneous endoscopic gastrostomy, a procedure in which a flexible feeding tube is placed through the abdominal wall and into the stomach. PEG allows nutrition, fluids and/or medications to be put directly into the stomach, bypassing the mouth and esophagus.  (ASGE, 2017)

Taking medicine should be easier.  I can put it right in the tube.  It’s definitely better than coughing and/or choking for 15 minutes trying to clear my throat.  I will be able to talk and eat at the same time.  Talking by other means than my mouth though.  I can even sleep and eat!  I want to see you non-PEG people do that!

I am not usually surprised by much in life.  My husband has been trying to see excitement in me for a long time.  It’s just not me.  I’m sort of a matter-of-fact person.  When I was diagnosed, there were no options.  So why get overly upset or excited?  I had to accept it.  And even though the feeding tube is an option, it’s one that I will accept.  It’s my way of not giving into the monster that is ALS.  Believe it or not, there can be more to life than eating or talking.  I’ll let you know what more there is in future blog posts.

In the meantime, I will try to take in all in stride.  At this point in my journey I think all the hard work is falling on my caregiver, Joe.  I see his struggle as a labor of love, but labor just the same.  There is no road map to follow.  Everyday with ALS is a new adventure.  A new attempt to rip his heart out.

The sun will come out
Tomorrow
So ya gotta hang on
‘Til tomorrow
Come what may

(excerpt from Annie – Tomorrow lyrics)

 

References

ASGE, (2017), Understanding Percutaneous Endoscopic Gastrostomy (PEG), retrieved December 11, 2017 from https://www.asge.org/home/for-patients/patient-information/understanding-peg

Annie – Tomorrow lyrics: MetroLyrics, (n.d.), retrieved December 11, 2017 from http://www.metrolyrics.com/tomorrow-lyrics-annie.html#/ixzz50zYzYehQ

On the Road Again

imagesI’m on the road again, literally and figuratively. I’m on the road to vacation and stuck in traffic on I-95. Then last week we hit a roadblock when it was announced that two ALS drug trials had failed. One of them I had taken part in for more than a year. So after some time being stalled at the gate, I’ll hit the road again looking for another trial to take part in.

The past few weeks have been pretty well trafficked with people, appointments, and just things to do.

At my last clinic visit I was diagnosed with a probable case of thrush. Another bump in the road. Thrush is a problem usually found in infants who are bottle feeding. So it fits right in with my scenario of wearing bibs, eating toddler food as snacks, and requesting to be taken to the bathroom to tinkle. The instructions on the medication say to gargle and swish four times a day. Um, that’s not happening. Swishing, gargling, and even spitting have gone by the wayside.

On a Tuesday early in the month I had a massage. My massage therapist comes to my home. After moving the furniture around in the bedroom, my aide skillfully gets me into that hospital bed I never use. I get a full body massage even though I cannot roll over. It is a relaxing hour and one that my immobile muscles appreciate. I only wish it was a covered medical expense and could be twice as long and more frequent. If anyone out there has a foot fetish, I have two feet you can massage whenever you want.

Later that afternoon I had an appointment for a telephone conference with researchers wanting to learn more about a PALS’ point of view of their disease. Now, if you’ve been following my blog, you know that I have come to dislike talking on the phone. It takes up a lot of energy and the majority of people I talk to don’t understand what I’ve said anyway. It’s very frustrating for me.

I planned the call late in the afternoon so that my husband would be home to act as my interpreter. As it turned out, he was stuck in a meeting and would not be home in time. As the clock ticked past the arranged time, I realized that the researchers had called but my phone was still set on do not disturb for my massage earlier in the day. Another road bump. I called back and managed it with some repetition necessary on my part. The call was tiring but worthwhile. Anything that drives research along is, in my opinion, worth the time.

The next day I had a wonderful visit with two friends who flew down from New York for the day. We all worked together in Intellectual Property in New York City. Ironically, I worked in the Life Sciences end.

That week wore me out and then it started all over again with a mammogram on Monday where the biggest impression I made was with my power wheelchair. Did you know you can have a mammogram in a wheelchair? And it doesn’t have to be the Rolls Royce of wheelchairs, as the ladies dubbed mine.

Wednesday evening I had a follow-up visit by neighbors who are members of our community outreach, Woodlake Cares. They are researching ways to help Joe and me. Together with my neighbors and my church family collaborating it will all get figured out. Love abounds!

And now the time has finally arrived to get on the road to another new adventure — learning how to use an eye tracking system. The system will be my voice. It will replace my computer and if I get good enough at it, I may be back to talking on the phone.

ALS is sucky and makes life difficult. It plays with our bodies and tries to make us give up. I have many frustrations that don’t always make it into this blog. But it’s important that we find the right road and cram as much as we can handle into the pit stop of our lives.

Pass the meatloaf

2013-11-07-15.23.37-2-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

IMG_6625Happy 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.

IMG_6630Next 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.

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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.

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