The Minutaie

There are a million little things you can do for yourself every second of every day. You don’t need to ask; you simply get up and do it. But what if there were times you couldn’t get up or if you were disabled and dependent on someone else? How long is it okay to wait? I mean, think of a baby. They are as helpless as I am, and most people come to their aid quickly. But when you are an adult with a paralyzing disease like ALS, it feels to me as if I can wait for any amount of time. After all, they know that my disease is incurable and fatal. So why spend time and money on something that progresses onward to my death? It’s pennies on the dollar in healthcare.

There are times when my caregiver is right in front of me and I cannot even make a sound to let them know that I am in pain or if they themselves are hurting me. So a reasonable adult waits in pain. Babies can cry for some of the same reasons I do. It might be my only form of communication at the time.

I do have a question I would like to ask though. If we protect babies at all costs, what about adults? I have good respiratory numbers to keep me alive. So the next move is to slowly decrease my food and to give me intravenous liquids. Does it sound like I am being replaced by an infant? I mean, we are all going to die. I just didn’t realize that I would be dying by an involuntary food strike or I could have joined the IRA years ago (OK, that is the author’s interpretation of what I heard from a hospice representative.)

At what point do we decide a person’s value and who makes the decision? What makes a person worth saving? Is it the number of years they live? Is it because they do not have a rare disease and more money can be earned on their illness (WWJD)?

On April 1, 2018, I wrote a letter to the President of Duke Hospital. I didn’t ask for, nor did I receive a reply, not even a form letter. But all the surveys I get from Duke have had his name on them. Do you really think he cares about an individual response, or just tallies up the responses his survey company gets? I bet I know the answer. After all isn’t Duke a for-profit hospital?

Got onto my soapbox again and off topic – the minutiae. So who scratches your itches? Who drives your power wheelchair when you can no longer move your hands?

Who opens the door when there is no handicap button, or you can’t push it? Who moves the trash can so conveniently placed in front of that button?

Do you care? Do you notice? The Americans with Disabilities Act has been a law for more than 25 years. Do you know any part of the law? I bet you know about driving with a cell phone, though.



(This blog  was  written  with eye-tracking)

Bitching & Complaining

bitchingYes, 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.

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.

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 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!

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.

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 Journey Continues

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 smiley-face-clip-art-emotions-400_F_9999900_9yijqIYv4KPY0vd4qCSNrLZx1W2gO0bO.  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.

On Vacation with ALS

Here I am vacationing with ALS.  On the trip east our van was packed with a rolling shower chair, a Sara Stedy, and a Hoyer lift.  Damn you ALS!  You see, I learned a few things from the trip to Boston last month.  Being comfortable takes a lot of preparation, packing, and equipment.

I had a terrible time with a lot of things when I was in Boston.  At home I’ve been sleeping in a lift chair, but vacationing forces me to sleep in a conventional bed. Since the Boston trip I bought a sturdy inflatable bed wedge for traveling.  Regular pillows don’t work for me because they flatten as I sleep.  In the hotel bed I sleep flat on my back and raise my legs about 45 degrees.  My husband has finally accepted that this is a comfortable position for me even if he looks at me strangely.

Working with an occupational therapist (OT) also helped us devise a method to get me out of the bed comfortably.  I had a phenomenal OT from Duke HomeCare and Hospice.  I highly recommend that any PALS (Person living with ALS) take advantage of OT and find things that work for you.

There are many things on this vacation I would like to do, but the reality is that I cannot.  It took us 3 days to find the accessible ramp so I could see the ocean.  Here in the Outer Banks the dunes block my view.  I think it is ironic that an accessible ramp was built and everyone uses it.  I’m find that I am getting selfish with my handicap accommodations.  The non-disabled have everything else at their disposal, can’t I enjoy a ride to the beach without having to move out of the way for you?  Yes, believe it or not, some people expect a wheelchair to accommodate them.

Today my husband asked if I wanted to cut vacation short and go home early because there were so many things I cannot do.  I had to lecture him.  I told him I was the disabled person and I would find things that I can do and want to do.  I spend enough time in my house keeping busy.  Now is my time to explore and show the world that ALS is horrible disease, but PALS keep on going.  What else can we do?