Tomorrow 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
So ya gotta hang on
Come what may
(excerpt from Annie – Tomorrow lyrics)
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
I’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.
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.
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.
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.
eyetracking.com (2011). About Us: What is Eyetracking? Retrieved November 4, 2017 from http://www.eyetracking.com/About-Us/What-Is-Eye-Tracking
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.
It’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.
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.
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
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.
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
So what’s new in my ALS journey? Some things are the same and only slight changes are visible to me and to those people I see every day. Stopping Tirasemtiv, my study drug, at 48 weeks appears to have had an effect on my muscle strength and/or fatigue. You see, I believe that during the study, which lasted 48 weeks, I was receiving the real drug and not a placebo. Stopping the drug for 4 weeks to enter the washout phase of the study was wonderful. I was able to live every day out of the fog of the drug. In truth, it was only a 1-2 hour period in the fog and toward the end of the 48 weeks there were times that I didn’t feel it at all. But when I had to temporarily stop taking the drug, I did feel as if my muscles were weaker or more fatigued. I needed a bit of help to do things I was able to do before like adjust myself in my wheelchair. I still need that help but I’m hoping that it was fatigue and not a loss of strength. This Friday my open label dose of Tirasemtiv will increase from 250 to 375 mg. I’m anxious to see what effect it will have.
My speech is also worse now. (I made a video recording you can listen to.) The morning dose of meds combined with dragging myself out of that luscious sleep makes my talking almost incomprehensible. A few people ask me to repeat myself and not all of them are hearing aid wearers or those that should be . The feeling that I have not been understood continues to bother me. It bothers me so much that I don’t like to talk on the phone anymore. Repeating myself at the end of a long day is tiresome and a real pain in the a$$. On my next visit to the ALS Clinic I will be asking about the latest text-to-speech technology. I have an app on my phone (see Aug. 9, 2017 blog post) that works pretty well except for the small keyboard.
And walking is a thing of the past. I gave that up in February of this year when The Pinkster arrived. The Pinkster is my 400 lb. power wheelchair. It gets me around quicker and safer than walking. The only things not in love with it are the walls, door frames, gasket on the door of my van – you get the idea. Your feet would also really dislike it; trust me. Prior to walking I gave up driving. I gave it up voluntarily upon diagnosis. I figured the rest of the world would appreciate it since my right foot was the first thing that fell victim to ALS.
I do experience muscle fasciculations which are small involuntary muscle twitches. If you ever felt an unborn baby moving inside his/her mother’s womb, you get the idea. They are not painful to me at this point but can keep me from falling asleep when they are really active. The only physically painful part of ALS to date is cramping. Stretching can cause cramping. I am also unable to reach behind my back without having my arm or hand cramp. Using a lot of pressure on a knife to cut food also has the same effect.
Clothing is another new issue. So far, when we are out and about my husband and I are able to manage with clothing and bathroom breaks. I don’t know about how other female PALS feel, but the handicap stall in the ladies room is too small for a power wheelchair. And can someone please explain what the grab bar behind the toilet is for? We find that companion restrooms are best suited for my Pinkster. It also eliminates the necessity of hanging a sign on the ladies room door indicating that a male is within. Of course, since there is frequently only one companion restroom in an establishment (if I am lucky), I must hope that it is not occupied, therefore, waiting until the last minute to find it is not recommended. If you are on the road, plan ahead and search for a Starbucks. Besides good coffee, they have great bathrooms for power wheelchairs. But please, can we put the towels and soap near the sink? And how am I supposed to reach that faucet? I don’t know how much detail I will divulge about the clothing issue, but going commando could be in my future!
Because of the always changing challenges of living with ALS I have been searching the internet and reading the blog posts of other PALS (person with ALS) for suggestions on how to adapt. One site I found very useful for PALS and CALS (caregivers of PALS) is written by Diane Huberty, a former nurse specialist in neuroscience and a current PALS. I think that you may find Diane’s information useful. Her insight into living with ALS can be found by clicking here.