Telemedicine

If you are reading this, you may know that I have amyotrophic lateral sclerosis (ALS) also referred to as Lou Gehrig’s Disease. I had my first telemedicine visit with my doctor last month. Telemedicine allows patients to stay at home and still visit their doctor. I had my visit using my iPad. The connection and setup are facilitated before the visit by technicians working with the Duke ALS Clinic. It’s not possible, of course, to see the multitude of other specialists that I would usually see during a visit to the clinic, but it does help to have an awesome doctor like mine.

My doctor is Richard Bedlack, and he comes to the clinic after his morning at the Duke VA Hospital where he is Chief of Neurology. Duke offers telemedicine for patients who have difficulty getting to the office for a visit. While it is not far for me to travel, I am now on hospice so this is another way to check up on me. The telemedicine offered at the Duke ALS clinic is supported by the NC Chapter of the ALS Association. You can learn more about Duke telemedicine by clicking on this link

When I visit the clinic, I am never rushed so that the doctor or any of the other specialists can get to the next patient. Every one takes the time to listen to all my questions and concerns and they take the time to get me an answer. Duke has assembled a great team of specialists to work with the ALS patients. My one concern, however, is that they do not have an ALS team available in the main hospital. As I described in a previous blog post (Blog Interrupted, March 23, 2018), it was a horrible experience in the emergency room that prompted me to write to the President of Duke University Hospital. The real problem seems to be that ALS is not a money maker for the hospital, just like many other rare or orphan diseases are not. The patients diagnosed with ALS are greatly outnumbered by diseases with treatments that are billable and can bring in a lot of cash. Telemedicine does not even have a billing code. My regular in-patient visits to the multidisciplinary clinic take place on Tuesdays. This is typically the only day Duke will allow the clinic to operate. Like I said before, it is a money issue.

I recently found out that the NC ALS Chapter did not reach its goal this year. The clinic and telemedicine services are very important resources for people living with ALS (PALS). Other PALS have organized fundraising events to help support the Chapter in its mission to help PALS and their caregivers (CALS). I am not able to do that. Instead, I am asking those of you who may have missed making a donation to my Team to do so now. If every registered participant raises $60 the goal could be met.

PALS need your help now. The cure for familial ALS is close. This will not help me, but there are so many other things that are supported by the NC ALS Association that helps PALS each and every day.

My Team page will be available until July 31. I did not join the Walk in Northern NJ this year.  We raised a lot of money there last year.  If my Team Kathryn North donates, we can help make this a reality.

Let’s do this! Click here to donate to Team Kathryn.

Thou Art Dust

It isn’t always easy preparing for the inevitable, but I have always tried to be prepared for things in life. We prepare for birthdays, holidays, we even pack lunches ahead of time. Some of us are last minute planners, but that always freaked me out.So with a new diagnosis of perhaps six months of life left, I am moving into high gear.

I planned my funeral mass about a month or so after being diagnosed with Lou Gehrig’s disease in April of 2016. Why leave that decision or task, if you prefer that term, to someone who is grieving? I picked readings with the help of my priest and told her what songs I preferred. My husband thought I was crazy. “Why are you in such a hurry?,” he wanted to know. Maybe it’s because I am more practical? I didn’t see any point in waiting? I know it is going to happen and sooner than I had ever imagined. We all die some time. Isn’t that what life is about? And besides, my husband has enough trouble finding his way in the prayer book already. And let’s be honest here; men don’t ask for directions, so why let a man direct my funeral?

I discovered a long time ago, when I attended a grief counseling session with my mother, that death is always hardest for those who are left behind. The dying usually realize their death is coming and find a way to accept it. My mother had lost a daughter, my sister, who was only 21 years of age, and then she lost her husband and rock, my father, in a construction accident ten years later when he was only 62. I saw the pain she went through even with her five other children around to help her through it all. I do not want to add to my husband’s grief by requiring that he sit down and prepare for a funeral during one of the worst times in his life.

I want my funeral to be a celebration of my life. I know that it is difficult for some people to talk about dying. It is even difficult for me at times, and the reason is the same. I might accept the fact that I am dying, but it’s painful to be witness to another person’s reaction to it. I know that I was shocked the first time hospice was suggested to me. All I could think of was SIX MONTHS left to live! It was worse than the day I received my diagnosis. Not a day goes by without the thought of a looming deadline. I sometimes feel as if I am still working and trying to make the midnight filing deadline for a patent application. There is always the chance that I could plateau and hang around longer, but no one can tell. ALS is not predictable like so many other diseases.

So just to forewarn you, I am going to prepare you for my inevitable end. I am going to be cremated. There will be no wake or viewing. I’m here now if you want a view. My funeral mass will be followed by the interment of my ashes on church property and a memorial service. It will be a trifecta of sorts. I want you to wear whatever you want and feel comfortable. Bring your noise makers, funny hats, or Mouse ears and be prepared to march on over to the tree near the pond. That is where I intend to have my ashes buried. Don’t be bashful or worry about what others will think. Tell them this noise, your outfit, and your happy attitude were my requests to y’all. See a tiger (that would be me) can change its stripes when it moves south.

 

 

Most importantly, feel welcome in my church because you truly are. God loves you no matter what. I may not always have practiced what I preach, but I believe in a loving and forgiving God.

So if you don’t get to visit me before I leave this earth, drop by the pond and throw in a line. You can join my husband in one of his favorite hobbies, fishing. I will be there too, waiting and watching for you under the tree. Say a prayer, share a memory, or pay it forward and do a good deed. Oh, and if you forget your fishing pole, there are some already there prepared for you.

,… for dust thou art, and unto dust shalt thou return. 
 Genesis, 3:19

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!

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.

 

The Truth

 

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.

ALS Advocacy Day

As my husband and I prepare for a trip to Washington, DC, for the annual ALS Advocacy Conference, I sit here and contemplate all the things that had to be planned in advance to make the trip comfortable and enjoyable for both of us. The things that used to be taken for granted are much more complex.

The conference itself is pretty expensive. Last year it cost us more than $3,000. This time we decided to forego staying at the hotel where the conference is being held. We also rejected two other nearby hotels that are accommodating conference guests. We opted for a hotel nearby that was less expensive and listed as one of the best ADA rated hotels in DC. It included a hot cooked made-to-order breakfast; my husband will appreciate not having to run around the city in the mornings. There was an evening cocktail reception which was nice.

The hotel change resulted from the reluctance of the three recommended hotels to accommodate my request for a hospital bed. Oh, my mistake, the conference hotel would allow the bed as long as my caregiver, that would be my husband, had his own room. Makes sense for a semi-paralyzed PALS (Persons Living with ALS) to be alone in their room all night, right? Maybe that was because the rooms cost $399 a night – the reduced rate!

So now that my chosen hotel was four blocks away, I knew I would have a problem when it was time to use the bathroom. So I asked the National ALS Association if they could ensure the availability of a Hoyer lift for me and other PALS. That did not happen for a variety of reasons, none of which I fully understand. So, for the comfort of my caregiver and myself, I decided to go ahead and get a Foley catheter. I am not really thrilled with another tube coming out of me. The ALS Association graciously provided an aide for the duration of my stay.

We left Friday, May 11th for Washington, DC with the van packed like the cargo bay on an aircraft. We packed the van with all of my machinery (cough assist, suction, trilogy, and Hoyer lift) and my custom shower chair. My husband also took along the pile of pillows I sleep with every night. The drive started off with me feeling uncomfortable seated in my power wheelchair (PWC) which required a quick stop to shove a pillow under my right side and remove my leg braces and shoes. We made it a little over halfway when I needed to escape the van. I took a break to tilt my PWC back and shift weight off my back side and raise my legs. A very necessary break for comfort and to keep any more blood clots from forming.

Soon we arrived at our hotel and it was time to unpack the gypsy van. The hotel staff were super friendly. Our handicap room had double beds. Unfortunately, the beds were on platforms and the Hoyer would not be able to get beneath the bed. The floor was carpeted, too, which makes moving the Hoyer very difficult. (The Americans with Disabilities Act really needs updating.) My bed solution was the pull out sofa in the other room. Hubby’s addition to the solution was to drag the mattress from the bedroom and put it on top of the sofa bed. I felt like a princess in search of a pea. The next day we rented a hospital bed for the rest of the stay. Minimum rental is a month; the cost is not pro-rated.

Saturday, two of our besties traveled from New Jersey via Greyhound to visit for almost three hours before turning around for another four and a half hour ride home. Part of our hearts went with them but it was so worth it! Just before they arrived we were surprised by a call from my cousin Mike. He drove up from Virginia for a visit just like the year before. We are blessed by friends and family.

Sunday we got down to business – the National ALS Convention. We had a meet and greet all day up until the welcoming dinner. The following day we received a lot of information relating to current research. There was a panel with a researcher, doctor, and clinician. It was exciting to hear researchers say that they feel they are close to solving the riddle of familial ALS, maybe even by 2019! Ten percent of people diagnosed with ALS have the familial form. The rest, myself included, have the sporadic form of the disease.

I spent a lot of time during the lunch break with the convention exhibitors, two in particular. They were Biohaven and Tobii Dynavox. My husband and I had traveled to DC in March to take part in a patient advisory panel for Biohaven. They were writing a protocol for FDA approval of a new sublingual form of riluzole. I am happy to tell you that I wrote a letter to the FDA in support, and it has been approved for expanded access prior to clinical trials. This means that it is available to PALS now, before final FDA approval, but PALS must ask their doctor to complete the necessary paperwork.

Later in the afternoon, we met with representatives of our local ALS chapters for a strategy session. We went over what we would be discussing Tuesday on Capitol Hill with our senators and representatives. I had a script prepared in advance that I would read with my Tobii.

Tuesday morning traffic was a nightmare on the Hill. It was law enforcement week and the President was addressing the police. There were police walking, biking, and riding motorcycles everywhere. It was a hot day and we had a long walk from our shuttle bus to the Senate office building. Every year walkers are advised to wear comfortable shoes.

We met with staffers for Senators Burr and Tillis for about fifteen minutes. Senator Tillis was tied up in committee meetings most of the day and could not meet with us. When Senator Burr arrived, we told him what our “asks” were and then the individual PALS told their stories. I was first. I spoke about my ALS journey so far and asked the Senator to support legislation eliminating the five-month waiting period for social security disability benefits. He assured us that he was in favor of the legislation and was a co-sponsor. Next we visited the House office building.

 

 

The House and Senate offices are connected by an underground tunnel. It is a bit of a walk between buildings. If you are lucky enough not to be in a wheelchair, you can ride a tram between buildings. We visited the offices of four Congressional Representatives and met with their staff people. In addition to presenting our four asks, we requested that the representatives and senators vote to approve a bill that would award the Congressional Gold Medal to Steve Gleason, a fierce advocate for ALS rights.

It was a long and exhausting day. And I violated one of my own ALS cardinal rules, not to do stupid stuff (thereby risking my own personal safety) by agreeing to walk, and not ride the shuttle, back to the hotel. Okay, I don’t really walk, but the trip back was the longest half mile for my PWC and me. When I entered the hotel lobby, my battery was at 3%. I prayed that I would make it from the lobby to my room on the 12th floor. As I entered the room, my battery read 0%. That was the same way I felt, drained. I was so tired that my husband got me undressed and put me to bed before the aide arrived at 6 pm. I slept straight through to the next morning.

ALS Advocacy is important. Next year there will be new PALS fighting for a whole community of people who are either dying or being diagnosed every 90 seconds. Please give us your support.

Bitching & Complaining

Yes, you read that right. This blog is about bitching and complaining. It is mostly about ALS, the bitch in my life, but a few other things may slip in. I am after all a born and bred New Yorker, so it’s a given that I am going to complain. If you don’t like complaining, don’t read any further. I am not about to change now. There are lots of things to complain about with ALS, and I’m taking the opportunity to put it all out there.

Disclaimer: These complaints are not directed toward any specific person, but even so, names will be changed to protect the guilty.

Communication
This is a big one. It may actually be the only real issue because not being able to express even the smallest desire is a huge frustration.

I live with my husband who has hearing loss and wears hearing aids, most of the time. So communication has always been an issue. I was always being reprimanded for talking to him from another room instead of face to face. That was a difficult thing for me to get used to since he was the first hearing impaired person I really knew. Heck, in my childhood home we would yell to each other from one floor to another. So, of course, it’s Murphy’s Law that I should lose the ability to speak and make our communication even more difficult. I spent about six weeks reading 1600 nonsensical phrases so I could have a synthetic voice that would sound like me. I now have a speech device that Medicare paid $16,000 for, and guess what? He can’t understand my synthetic voice on it. Murphy, again.

We used to say that as we got older, we could learn sign language to add to our ability to speak to one another. Damn you, Murphy. I can’t use my arms and hands very well.

I have my speech device which is a Tobii Dynavox. I just call it my Toby. I took it with me to the hospital where no one had the time to wait for me to type my responses. So I was essentially voiceless. I take the effort to practice so I can be faster at communicating and there is always something to annoy me. For example:

1) Toby quits in the middle of a sentence I have been painstakingly writing;
2) People are on to another discussion before I can fully respond;
3) As I type sometimes people will read the screen and try to anticipate what I am saying (sometimes this is OK, but it takes away privacy of prior conversations because of its predictivity function. I really don’t want people to see “I need the bed pan” when I was writing “I need some help.”)
4) I attempt to use the dwell-free keyboard which is faster and doesn’t appear on the screen until I want it to, but if I make an eyegaze mistake, it takes longer to correct and, therefore, longer to speak;
5) People don’t really understand what Toby said, but don’t bother to ask for clarification. To me this seems like they are not interested in communicating.

The worst times for me are when I am asked questions that require more than the nod of my head, which I can still do right now, and Toby is packed away or out of my sight. If I notice something important or need something, I am helpless. These instances occur frequently during bathing and dressing.

Sensations
Constantly feeling itchy is an extreme annoyance.  I cannot reach very far so lots of these feelings must be ignored. Mind over matter, or in this case itches, does not always work. I can feel loose hairs on my skin like bugs crawling on me. My pleas to remove them bring snickers from Barney. A real annoyance.

Burning sensations from pressure occur at times. I feel the burning in my feet at least once again daily. I used to experience burning in the heels of my feet almost every night. Fortunately, this situation seems to be under control with the use of many, many pillows. In fact, our bedroom has become overrun by pillows.

PBA
PBA or pseudo-bulbar affect is the nemesis of my relationships. I know many people are put off by it. It is hard on me and hard on people who are witness to it. I was never an emotional person and now I start crying at the drop of a hat. Sometimes it’s because I’m upset or frustrated. At other times I’m just overwhelmed by the emotion of the moment. Thankfully, medication has helped control it a lot, but a little bit lingers behind. It makes it hard to breathe. I hate it!

Relationships
Where have some of those old relationships gone? I’m dying and you can’t say you’re sorry? Did I piss you off? Let me know if you want to reconnect. I can apologize too. I will be dead a long time and I won’t be back.

Hospice
I have now signed up for hospice. It should begin this week, right in time for my trip to Washington, DC, for ALS Advocacy Day. Hospice isn’t a prison. They actually expect me to live my life before it’s over. How long I will be on hospice will depend on my respiratory system. While on hospice (which is at home by the way) I will get a weekly visit from a hospice nurse and 2-3 CNA visits a week. I will also have a case manager. Medications will be monitored and provided through hospice as well. When I travel, I get information on a local hospice to contact, if necessary. If you have ALS, look into palliative care or hospice, and find out when it is appropriate and how it works with the insurance you have. It can give your caregiver some help.

Getting hospice on a predictable schedule seems like that will be my next complaint. Can’t things be planned in advance? Don’t call at 3 pm to come give me a shower. I like to plan things ahead. Most of my funeral plans are finalized. There’s just one date I can’t schedule. So get with the program, already! Please and dammit!

The lazy blogger

This is what I am calling my lazy blog.  It has taken me quite some time to get motivated to write, and I feel as if I have been working on it forever.  I am not sure why it has taken me so long to get serious about it, but it might have something to do with some of the subject matter and the fact that I have been busy working on the ALS Walk.

Saturday, April 21, 2018, was the ALS Walk in Raleigh. It was lots of fun and I was excited to see friends and family who went out of their way to be there to support me. It was a fun time and together we kicked ALS in the butt. We raised over $9,200 and won the award for the best t-shirt design. Being Team Captain and a PALS did not work well for me.  It is very tiring. So a BIG thank you is due to my Team, including Alston & Bird, NCCU and Alpha Phi Sigma Criminal Justice Honor Society, PatientsLikeMe, and Woodlake Cares 4 Kathryn. I had tons of help from friends like Alisa, Ericka, and Eileen, who kept me sane. A special shout out to Maria! Thank you one and all. If I forgot to mention anyone, I apologize.

I had my three month follow-up visit at the ALS clinic on Tuesday before the Walk. I was surprised to find out that I gained back 5 lbs. eating only liquid nutrition through a tube. I am a lot weaker in my arms and my breathing has dropped again, but I expected this news. You see, we have been wrestling with the possibility of transitioning from palliative care to hospice care since the previous clinic visit in January. Hospice was recommended by the doctor and the palliative care nurse.  It was not an easy thing to hear at first. My husband and I mulled it over for a while. At my last visit we were ready to discuss it again with the ALS doctor I have has from the start. It was, as my husband put it, “the elephant in the room.”  We are now hospice “shopping.”

Hospice offers more services but takes away life-prolonging medication like my ALS medication. Initially, I was surprised that they would do that, but I guess that is the point of hospice. Hospice supports you at the end of life so there should be no need for life sustaining medications. I don’t feel like I am about to die, but it is not something that anyone can predict.

So, in the meantime, I am planning on attending ALS Advocacy Day in May. It is costly and all out-of-pocket. If you believe in fighting for all things ALS-related, perhaps you’ll consider making a contribution to the GoFundMe page we set up for the trip: Advocacy Day

This year at Advocacy Day there are four legislative asks. Three of these asks involve funding for existing programs. First, for the ALS Registry at the CDC; second, for the Department of Defense ALS Research Program; and third, for the National Institute of Health, particularly the National Institute of Neurological Disorders and Stroke.  The fourth ask has, to my knowledge, been requested more than once. The fourth seeks to end the five month wait period before ALS patients can receive social security disability benefits.  A diagnosis of ALS automatically qualifies a PALS (person with ALS)  for benefits, but for many the need can be immediate.

The five month wait is, in reality, six months before the first benefit check is received. Some people cannot get by for six months without benefits for a variety of reasons. Even though some PALS may have other money coming in, they could require funds to make their home accessible, among other things.  I have heard of PALS who do not even survive six months.

As for me, I stopped working three months after my diagnosis.  Very soon thereafter I was forced to move from a house I purchased less than a year before. I could no longer climb the staircase to my bedroom. The new home was one level but still  required accommodations.  I wasn’t even able to climb the five front steps without assistance.  Six months post-diagnosis we were already discussing the necessity for a power wheelchair.

Finding a cure for ALS would undoubtedly help people with other neurological diseases.  ALS is one of those rare diseases many people know little about, and many people have never heard of it and how it affects individuals and families. those people include congress people and senators.

So even with hospice ahead of me,  I will continue to advocate for myself and others who will come after me.  Help me by raising ALS awareness.

A Testimonial to Kindness

I recently received gifts from Team Gleason.  This is a testimonial to how real charity works.  #NoWhiteFlags

Can you fall in love with someone you’ve never met?  How about a foundation?  I am completely head over heels in love with the generosity and support for people living with ALS (PALS) shown by Team Gleason.  Before ordering my assistive speech device (Tobii), I wrote to tech support at TeamGleason.org.  I received an out of office message.  Being impatient, I was a little disappointed.  Yet, the day after returning to the office I received a response from tech support with an exhaustive list of recommendations.  I ordered my device which unfortunately did not come with a floor stand so I was not able use it at night if I needed to alert my husband.

I posted in an ALS Caregiver Group on Facebook looking for a used floor stand to purchase. Surprise!  Team Gleason came to the rescue.  I was offered a freefloor stand with no strings attached.  It arrived four days later.  The stand was brand new.  I can now use my Tobii in bed, in my lift chair, or wherever I want.  It is on wheels and gives me the ability to communicate, read and respond to emails, surf the internet, etc.  It allows me to learn more about operating Tobii lying in bed at night while my husband and caregiver gets a much-needed break.

My husband was so impressed with Team Gleason and their knowledge and willingness to help PALS that he sought advice on a replacement shower chair.  Since I could no longer stand, it was very difficult for my aides to get me from Hoyer to shower chair.  It typically took several attempts and we had recently resorted to tilting the chair backwards; not a good idea.  I was usually unable to be seated comfortably and wanted to rush through showers because my legs and feet would go numb sitting in the chair.

Team Gleason offered a solution.  We were flabbergasted when the solution was the offer of the exact custom-built shower chair Steve Gleason uses.  I waited four weeks for it to be built and it was soworth it.  The chair is padded and extremely comfortable.  It can tilt forward and back and has comfortable arm troughs. Best of all, no more numb legs or feet.

 

 

Thank goodness for kindness. Thank you Steve Gleason and Team Gleason.  Your generosity has made my life with ALS a little less frustrating.  Living with a disease where everything is taken away, your donations give back comfort and pleasure.

 

 

Blog Interrupted

Things have evolved here at home.  I’m sleeping back in the hospital bed as a concession to my caregivers.  They did not ask me to do it, but since I’m the one dying I did not want to kill them in the process.  I said goodbye to the Sara Stedy for transfers because I was losing the upper body strength necessary to use it.  It was getting too difficult to get out of the lift chair safely.  I’ve transitioned over to the Hoyer lift and it’s not bad, not that I ever thought it would be.  But I know there were people out there who doubted I would willing convert.  As I felt my strength leaving, I was begging for my caregivers to use the Hoyer.

Washing and dressing are the longest part of my day.  Sometimes I need a nap afterwards.  Dressing is done in bed now.  Basketball pants with snaps up the outside of both legs and skirts are becoming my new apparel.  I’m still fighting against going commando so I’m searching for someone who wants to help me adapt clothes.  Since I know how to sew, it may turn out that I will have to teach my husband how to make the adaptations.

My husband is now on a leave of absence from work.  It turns out that he is my only untrained caregiver allowed by law to operate all the equipment I need.  I won’t go into the absurdity of that.  His awesome co-workers have donated almost six weeks of time to him; something I think is amazing.  I am anxiously awaiting warmer weather so we can travel the neighborhood walking trails.

My community has a volunteer organization, Woodlake Cares, that helps neighbors in need.  They do not perform personal care though.  One day while I was out on the trail I met a friendly neighbor Suzanne.  Suzanne  slowed down her pace to walk along with me and my aide.  She wanted to learn about ALS and me.  That chance meeting spawned a new volunteer group that joined with my church community to form Woodlake Cares 4 Kathryn.  Awesome and amazing, isn’t it?

Also amazing to me is the help I have been given by Team Gleason.  As I mentioned in a previous blog (Trick-or-Treat, Nov. 5, 2017), Team Gleason is a charitable foundation formed by Steve Gleason who played professional football for The New Orleans Saints from 2000-2008.  He was diagnosed with ALS in 2011.  The mission of Team Gleason is “to generate public awareness for ALS, raise funding to empower those with ALS to live a rewarding life, and ultimately find a cure” (teamgleason.org, 2016a.).

In the evenings when my husband removes his hearing aids, it is even more impossible to communicate.  I was looking for a floor stand for my eye-tracking device so I could have it bedside to communicate with my husband.  New stands cost upwards of $1,200.  My husband searched the internet for a used stand and found one for $950.  I told him to hold off on purchasing it.  I wanted to post in one of the ALS forums I joined on Facebook to see if anyone there had one to offer.  I quickly received responses.  A few people told me their devices came with both wheelchair and floor stands; something I was told was not possible for me.  Then a message popped up from Team Gleason.  They offered to send me one free.  Two days later it arrived.  Brand spanking new, no red tape, and no strings attached.  Unbelievable!

I was also having trouble transferring to my wheel-in shower chair.  It cost me almost $600 when I bought it.  (Why so pricy?  Duh!  Because you are handicapped and need it.)  The transfer from the Hoyer lift was making it difficult to get seated properly.  My husband was overwhelmed by the multitude of chairs available for sale.  How did we know it would work?  Was it a good quality?  They were not returnable.  He decided to call the experts at Team Gleason for advice.  After all, they organized Team Gleason House which was planned specifically “for Innovative Living is a new residential facility designed to help people diagnosed with incurable neuro-muscular disorders live more independently” (teamgleason.org, 2016b.) so we knew they had the knowledge.  His email was returned with a request for his phone number.  Two minutes later he received a call.  They understood and offered me a custom-built shower chair.  Again, no red tape!  How do you thank someone and their foundation for their generosity?  You SHOUT IT OUT HERE for the world to read.  Thank you Steve Gleason and Team Gleason for your generosity.

Blog interrupted.  I was interrupted writing this blog post on March 15th when I had to suddenly go to the ER.  I had planned to meet with a funeral director that day to arrange  my final plans and continue living.  But my aide noticed how swollen my left leg had become.  A quick call to my doctor sent me to the ER.  Once I left the house anything and everything went wrong.  I was triaged and then called in for a sonogram of my leg to check for a blog clot.  Oops, you’re in a wheelchair!  They didn’t want to inconvenience me with a Hoyer lift, picking me up to be put on a stretcher and then picking me up to go back in the wheelchair.  So it was back to the waiting room.  Waited some more and got called again.  Oh, now it was decided that they could perform a sonogram from my wheelchair.  Amazing!  The wheelchair had the same ability to recline as earlier.  Guess they just figured it out.

We had arrived around 11:30 a.m. before the crowds, but it took several hours to get a room in the ER.  Unlike other hospitals I’ve been in, Duke has actual rooms in the ER for patients.  Once you’re in the room you get the feeling you are locked away from everyone, abandoned.  I hadn’t taken any of my medicine that day and no one was in a bother to get it for me.  I guess the ER  staff was busy, but doing what I have no idea.  It took two requests to get a head pillow.  I was put on the ER stretcher where I was left for 8 or 9 hours.  It was like murder.  My sensitivity due to neurological problems and the inability to move kicked in and it felt like my buttocks was burning. I cried and screamed for relief; my PBA was in full swing and I let it rage.  Instead of simply moving me, I was offered morphine!  Morphine would slow my respiratory system.  How could it be that no one understands ALS in a hospital with a renowned ALS Clinic!  You would think a neurologist would be called in to consult for a patient with a neurological disease.  That only happens on TV.  Finally I got two more pillows placed beneath me.  That solved the problem.  Morphine versus pillow.  Smh.

Around midnight I finally got a hospital room, but only because my husband went home to get my Trilogy machine.  The admitting doctor had never heard of Trilogy and said I would need to go to the respiratory ward which had no bed available until the next day.  Not happening!  So off my husband went to get my machine from home leaving me under the watchful eye of a friend who had joined us and knew her way around the medical nonsense.  About ten minutes after arriving at the valet my husband learned that they had killed our van’s battery by leaving the transmission in neutral and the lights on.  Now he needed a jump at 12:30 a.m.  On his way back to the hospital, our friend had to call to tell him the hospital pharmacy did not carry one of my ALS-related medications.  (Again, this is a hospital with a renowned ALS Clinic.)  So again he went back home.  At 1:30 a.m. we kicked our friend out so she could rest up for her next day at work.  It was an exhausting day.

The good news in all of it was that the staff on the hospital floor are excellent.  The nurses and nursing assistants are great at what they do, although I was their first ALS patient.  The doctors did not know much about ALS so if you cannot speak, you had better have an advocate with you.  Communication for me came down to shaking my head.  No one has the patience to wait for your speech device.

In the ER with my friendly Angel Eileen

My FU to ALS

In the comfy bed

The final result is that I have two blood clots, one in my left leg and one in my lungs.  I will be on blood thinners for life.  FU ALS.

References

teamgleason.org (2016a.).  Team Gleason, Retrieved March 14, 2018 from http://www.teamgleason.org

teamgleason.org (2016b.).  Team Gleason House, Retrieved March 23, 2018 from http://www.teamgleason.org

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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