living with ALS – AlteringLifeSpectations

I left my heart in….

One of the benefits of quarterly trips to San Francisco for my ALS Clinic visits and Botox shots, is discovering new areas of such an interesting city. There are historic or interesting things around every corner.

But first, we had to get up early to get my 10:30 Botox appointment at UCSF Mt Zion on Divisadero. The fastest way is always Highway 37 at that hour of the day. I love seeing all the birds along that road.

Here is your quarterly picture of my painful Botox shot.

I also noticed this lone tree surrounded by concrete – a nice little piece of nature.

Then we had lunch at our favorite deli in the Botox building. Then off to UCSF Parnassus for my ALS clinic visit. For once, they did not take my vitals again but used the ones from the morning appointment.

My friend Barb, who is a research pharmacist in Canada, had emailed me some ideas. After reading my last blog she had several ideas as to what could be happening. One was slow gastric emptying, which could be helped by a drug available in Canada. I had taken that before for breast milk when I was pumping because my little preemie could not breast feed. The other idea was that the Omeprazole could be reducing acid so much that stomach muscles take over and push food both both up and down. So I stopped taking Omeprazole, despite her warnings that quitting suddenly could lead to massive amounts of acid. (That didn’t get me until Saturday).

They were amazingly receptive to her ideas, although the emphasis was on slow gastric emptying with no consideration given to Omeprazole. (She is a research pharmacist and one who works with lots of meds). So we worked out a plan where I would try bag feeds dripped at a slower rate (2 hours vs half hour), then try domperidone, the medicine with the champagne name that we have to get from Canada. And for some reason I need an EKG before the domperidone (not in 2000) and I should have had one before Neudexta in 2016. And then the 3rd step will be a change in formula. I am also switching to the lower dose acid reducer and I will ask my GP about tapering off Zoloft which seems to be making me very dry.

Stan said he thought I was walking slower but I, in denial, blamed it on the Xanax which can increase risk of falls. But I do have to admit I am more clumsy and move slower especially when tired. And it is harder to turn in bed. And I do get cramps in hands and legs. Of course, we will get to the bottom of the reflux and headaches right when I start failing faster in other ways.

But back to interesting San Francisco. We stayed at the Hilton Financial District for the first time. It is on the edge of China Town and right across from Portsmouth Square which was hopping on Saturday morning with live music. There is a playground and lots of Chinese Chess players.

From our room, which faced north, we saw an interesting building with a blue dome on top.

Stan thought it must be an observatory. But I had to Google it – it was built by an eccentric Italian Architect in 1933. You can read about it here in an SF Chronicle article called “A Quirky Tower on Telegraph Hill”

So my ALS story will continue with quarterly visits to San Francisco and eventually I will leave my brain in San Francisco.

The Good, the Bad, and the Ugly

Yes, 2.5 years into this disease it is the good, the bad, and the ugly.

First the GOOD:

I have good local doctors who care about me and want to help.

I have great neighbors who will go on walks with me and have boys for my son to hang with.

I have a wonderful husband who is my caregiver despite his own health issues.

I have a wonderful 17-year-old son who spent his two week spring break with track practice and meets and 4 Eagle Merit Badges and his Eagle project proposal.

I have friends and family who check in on me and help out when needed.

My cousins Salli and Alec, whose brother died of ALS, and my brother Pete are all participating in the UCSF ALS and Dementia study. Their participation will get us closer to a cure.

I went back to aqua fitness once last week.

I decided to add some color to my hair to counteract the bad and the ugly.

THE BAD:

What I have thought was allergies (and some of it was) is mainly reflux which is now so prevalent that I have to be careful. Even putting on my shoes or bending over without knees spread causes reflux. And every meal causes reflux too. And the associated headache may be migraines although there is a sinus component. But I got a prescription for the headaches and we got a Sleep Number Bed on order. I have been using a wedge but I slide down and wake up with reflux in my mouth. I will try sleeping in a chair until the new Sleep Number Bed that we ordered arrives.

THE UGLY:

I have to suction out my throat, and after a few days I have to clean it out and boy does it stink. At least I can still clean them myself.

I have to wear Depends every day now. What feels like passing gas could very well be a bowel movement.

OK TMI

But there have been limb involved patients who told me they were jealous. But I don’t think there is any easy path with ALS. But there is always good with the bad and the ugly.

a sneezy, wheezy poem

For the first time I will write a poem for my blog. Please bear with me.

Sneezing, wheezing, must be spring.

Used to pop a pill once a day and be fine.

But with ALS, allergies are not a minor thing.

I have to finely balance my time.

I use meds, cough assist, and suction, plus kleenex, nose sprays, and mouth spray.

Some days I can get feeling pretty good after a shower.

But on others it can take most of the day.

And always with a clear esophagus the drainage can overpower.

I don’t know why I am an enigma.

It seems like in 2018 with a very old disease they should have seen it all.

But there is a stigma.

And I have to reinvent the ball!

ok a little poetic license on the last word😎🍃🌺🌻💐🌸🏵🌹🥀🌲🌱⚘🌷🌼🌳🌾🌿☘🍀🍁🍂⛳flowers, trees, dust and grass

Break Free

Horoscope for Cancer, March 27, 2017

The desire for perfection is a prison. The need for acceptance is a prison. Break free.

I rarely read horoscopes, and I notice they are all so general they apply to everyone. I looked at this one, which is mine, from my ALS perspective and got a different meaning than I would have without ALS.

In my non-ALS life, I long ago gave away the need for perfection. I stayed in a difficult math class in high school rather than transferring to an easier class to keep my straight A’s.

I also gave up the need for acceptance long ago when I realized that people liked me as I was.

With ALS this is more like give up the search for pre-ALS normal life, which is gone forever (although I get teased with simulations of normal every few weeks) and the need for acceptance is my own acceptance of whatever this disease brings.

And more on the March Madness family rivalries: now my dad’s and brother’s team, Loyola, will play my sister Cathy’s team, Michigan, in the final four. And sadly, my brother-in-law Jamie’s Number One seeded Virginia got knocked out in the first round. That’s why it’s called March Madness!

Of the Earth, Love the Earth, and will return to the Earth

RIP Stephen Hawking (1942 – 1918), theoretical physicist and quick-witted man who lived with ALS for 55 years.

In the visible world, the Milky Way is a tiny fragment; within this fragment, the solar system is an infinitesimal speck, and of this speck our planet is a microscopic dot. On this dot, tiny lumps of impure carbon and water, of complicated structure, with somewhat unusual physical and chemical properties, crawl about for a few years, until they are dissolved again into the elements of which they are compounded.

Bertrand Russell

source: Astronomy Picture of the Day, September 4, 2011 In the Shadow of Saturn Image Credit: Cassini Imaging Team, SSI, JPL, ESA, NASA

Photo Explanation: In the shadow of Saturn, unexpected wonders appear. The robotic Cassini spacecraft now (2011) orbiting Saturn drifted in giant planet’s shadow for about 12 hours in 2006 and looked back toward the eclipsed Sun. Cassini saw a view unlike any other. First, the night side of Saturn is seen to be partly lit by light reflected from its own majestic ring system. Next, the rings themselves appear dark when silhouetted against Saturn, but quite bright when viewed away from Saturn, slightly scattering sunlight, in this exaggerated color image. Saturn’s rings light up so much that new rings were discovered, although they are hard to see in the image. Seen in spectacular detail, however, is Saturn’s E ring, the ring created by the newly discovered ice-fountains of the moon Enceladus and the outermost ring visible above. Far in the distance, at the left, just above the bright main rings, is the almost ignorable pale blue dot of Earth.

I have loved this photo of Saturn with the tiny dot of Earth far far away, since Neil DeGrasse Tyson used it in a presentation at the University of Nevada back in 2011. Seeing photos of how truly small we are in the Universe makes Bertrand Russell’s quote above even more poignant.

Seeing photos from Ash Wednesday last month reminded me of all my childhood Ash Wednesdays – getting ashes (of what?) spread in a cross on my forehead while the priest said, “Remember man, that you are dust. And to dust you shall return.” Being a geologist, I like the idea of being part of Mother Earth after death. If I donate my brain to ALS/FTD research, can I still be cremated and request where I want my ashes spread? I will have to research that.

From my mother-in-law Cathy, who is reading Neil DeGrasse Tyson’s Astrophysics for Busy People; to my mother-in-law Sharon, my sister-in-law Terry, and Keia (one of the foster teens I mentored), who are all into energy healing: it all comes down to energy and particles and waves.

But in the years between being dust and going back to dust, there is a lot of being human that takes us so far away from remembering that we are mortal.

Some people leave this earth suddenly, but those of us with fatal diseases get time to contemplate our mortality. It makes me sad to think of leaving all that I know about this amazing planet and all the people on it that I love, especially Stan and Andy.

And my cross to bear is this mucus problem. I finally got all cleared out and found a breathing technique to open up my throat by belly breathing (our natural way of breathing that gets closed up by the stresses of life). But then I thought my bipap was broken because I am waking up all dry, but it was not. I am waiting for a new mask (on order) which could be part of the problem. But it is now difficult to keep my mouth closed especially when it is dry and it gets dry from the air of the bipap even with the humidity turned way up. So I have to work to get all cleared out again each day. I have tried a chin strap but I have an overbite – orthodontics weren’t as good when I was 12 as they are today. So I have trouble keeping an airtight seal when sleeping. I have ordered another type of chin strap and we will see if it works.

I need to put a caveat on the breathing program I shared last week. It will only work for ALS patients who still can control their diaphragm and intercostal muscles between their ribs and their transverse muscles. I apologize for presenting it in a way that sounded like it could benefit all ALS patients.

So I did not get my usual winter break from mucus this year. Even if I figure out how to stay balanced, grass pollen will be back soon and my allergies will be back too. And this year I know that antihistamines cause thicker mucus, so I will have to stay away from them. My new breathing technique will help but I will be tied to my machines and home. But home is a nice place. After all these years, I am working on my office, which had been cluttered FOREVER. I got a good start – a new rug and new window bench and lots of recycling. But now I have taken a break from decluttering to get taxes done, but I will get back to the decluttering – I have big plans as long as I have enough time on Earth. And I can use a humidifier in this small room and help keep my mucus thin enough to swallow, usually.

I also decided to quit adding fiber to my diet – I think the added fiber was contributing to my reflux. And I will add walking before meals – I may need a pollen mask. I walked around the block on Monday before lunch and a few hours later I had thick mucus, that would only loosen up a tiny bit with guaifenicine. It is not like my usual allergy mucus. I will see my General Practice Doctor Wednesday afternoon. I hope I am not sick. In the meantime, I am using nasal saline spray in my mouth, along with guaifenicine, and I can get clear going through the tedious cough assist and suction routine – deep suction only in 10-second intervals because longer times risk lung collapse. I can only use guaifenicine every 4 hours but saline spray as often as I want. It tastes very salty to me because I have not had salt in over a year (except for that Pacific Ocean natural netti pot on New Year’s Eve with the vacuum cleaner suction).

There are flowers blooming outside, snow on the mountains, and my orchids are happily blooming in my south facing kitchen window. There is still a lot to enjoy in my remaining days alive on Earth.

Darkness vs Hope

I wear these bracelets every day – one represents darkness and the other hope.

The following poem was a blog post written a few weeks ago by my friend Liz Feltham who is a blogger with ALS up on Vancouver Island in British Columbia.

https://wp.me/s79Y2-darkness

Black dog has me by the throat. I expend all my energy trying to pry those locked jaws off just a little for some breathing room. Sometimes I am strong enough to gasp a breath, maybe two, but not always. Never for long.

Social anxieties grow deep roots. I open Facebook, see the messages, the posts, the lives. I close it quickly, terrified I have to engage.

I am imprisoned in my house. I have a medical appointment on Monday and am already sick about it. Oh the irony.

Loss followed loss.
The disease has taken advantage of my weakness.

I am as brittle as an old woman’s laugh.

I am as fragile as a teen girl’s heart.

I am as delicate as an infant ‘s bones.

With the slightest hit, I will shatter like vintage crystal against marble floor.

As the black dog‘s jaws squeeze my vision is greyed and blurry.

I need a light, a beacon, before I succumb to the ease of black velvet nothingness.

This struck a chord with me, not because of breathing, but because of the mucus that gets stuck above my vocal chords. Mine is more like a coarse black rock.

Liz was hospitalized with pneumonia right after she wrote that. She said the Black Dog left her when she was in the ambulance on the way to the hospital. I think her Black Dog and my Black Rock are anti-hope. Once you find out the cause of your problem, then you have hope that it will be cured and then your Black Anti-Hope goes away.

I still do not know if I am getting rebound headaches from decongestants which I have discontinued as of last Friday, or if it results from blockage from reflux in my esophagus, or thick mucus, or all of the above.

I get a tightness in my throat that is from a build up of mucus in my throat. It takes a careful regular dosage of guaifenesin and humidifiers and cough assist and suction to keep things draining. So I feel tied to home. And the day has come that I feared back in July 2016 when I first got my suction machine with the long thin catheters to go down my throat. I have to suction deep, past vocal chords. Luckily my gag reflex is much deeper too.

And then my new Facebook friend with ALS, Dagmar Munn, joined ALS TDI’s Precision Medicine Program and posted about it. I said “I have been in it since last fall.” She said “So we are both in the I owe you a yo yo club?”, referring to the phrase we have to read into the phone every month: I owe you a yo yo today, five times. I said “I used to be able to say that well.” She suggested I try https://alsnewstoday.com/2018/02/09/als-learning-how-to-speak-breathe-with-ease/

I tried the first two lessons and already with the breathing and posture things I learned I am swallowing my mucus better. So my black rock may be going away too. (I will post more about the speaking and breathing with ease program in a future blog. For now I recommend it for anyone with ALS to maximize the breathing we have available to us. And for early onset Bulbar or any limb onset with no Bulbar yet it can only help you breathe better and maybe talk longer. And I wish I knew about it when I was first diagnosed, instead of being told to stop speech therapy because it would tire my muscles.)

But then again, my black rock may not be going away just yet. My bipap broke and has not been working properly the last three nights, so I have been sucking dry air all night and waking up uncomfortably dry and with a bad headache. It takes several rounds of guaifenesin and shower without fan and sitting in my small office with the humidifier on, plus the ever present cough assist and suction to get back in balance.

But luckily, Dagmar is a phenomenal writer about living with ALS and she is often published on https://alsnewstoday.com, which I get in an email every weekday. She recently wrote about thinking like an astronaut to deal with the things that come up with ALS: think of Matt Damon in The Martian. Lots of things went wrong but he didn’t sit down and cry – he got to work to deal with the problem. His alternative was death. Our alternative with ALS is a poor quality of life for the days that remain for us. Our challenge is to make the best of whatever we are facing right now.

Still Trying to Get out of a Viscous Cycle

A couple of weeks ago I was up in the middle of the night because I couldn’t sleep. Then Stan came out for a drink. I realized that I was swallowing thin drainage without problem. As Stan was heading back to bed I said, typing, “I am swallowing thin stuff now no problem. Getting all mucus filled with the bipap every night starts a viscous cycle.” What an appropriate typo! Of course I meant vicious but it truly is viscous too! It is strange to have typos when speaking, but there have been some humorous ones. When I type fast I tell people to pick the one misspelled word!

With multiple trips to doctors as well as a helpful Facebook ALS caregiver (wife), I may be closer to a cure from mucus. Finally! I hope.

Just five days after our Bay Area trip to San Francisco with Jonika and Ollie, I had to go back for ALS clinic. Stan’s sister, Terry, Jonika’s mom, offered to join us to help with driving. We left at 5 AM and since we beat all rush hours we arrived with an hour to spare. We decided to hang out by the Bay with a view of the Golden Gate Bridge.

Then I had my painful botox treatment for salivary glands. We kept doses the same while I am trying to get to the bottom of the mucus problem because I don’t want to change too many variables at once.

I had ALS clinic that afternoon. I was able to report a weight gain (a really big yay for ALS patients!). I was able to suction the mucus out of my vocal chords while the respiratory therapist was with me and was finally able to do forced vital capacity without vocal chord involvement (another really big yay for me).

We stayed with cousin Julie again and Terry got to get reacquainted with her after as many years as it had been for Jonika and Andy. She cooked a lovely meal for Stan and Terry and had homemade scones for them at breakfast.

Our (weekly!) photo with Julie in the beautiful courtyard in the middle of her house (photo by Stan Macdonald)

We had fun driving back home on Saturday on Interstate 80 with President’s Day weekend skiers, many of whom seemed to have Chinese New Year hangovers.

Then on Monday night we drove to Vacaville to be closer to San Francisco for an early Tuesday appointment with a UCSF ENT. Again, we were in President’s Day weekend traffic. It was snowing and traffic was moving slowly just past Truckee. Google maps said we could save an hour and a half if we went on Donner Pass Road past Donner Lake. So we took that bypass and avoided the freeway Donner Pass with accidents, slow trucks and heavy traffic. We stayed on that road (HWY 40) almost all the way to Cisco Grove. When we hopped back on I-80 traffic was moving better. It was good we left the night before because we were late for the appointment anyway due to traffic.

The UCSF ENT was kind and helpful but found nothing in my nose or ears or sinuses that could be causing my problem. He did point out that Mucinex is a vasodilator, which could be causing my severe rebound headaches when I am late on a dose.

We returned to Reno Tuesday night. On Wednesday, I was feeling dejected but at least had pretty trees, with a storm coming in, to look at while using my cough assist and suction, which seems to be my life.

Then we got a call from my gastroenterologist that they had a cancellation the next day. And my friend Steph Courdin from the Ambassador program posted on Facebook about a tight turtleneck feeling and when I replied and detailed my situation, I got a reply from a woman named Mary from Florida whose husband had had the same symptoms. I asked her to private message me about what worked for her husband. It turned out that what helped most was a drug that I discontinued in August. I still had some and started taking it right away. It should kick in in about a week.

My gastroenterologist wanted to do a endoscopy, to look at my stomach and esophagus. And for once we got it scheduled quickly, for the following Monday.

a great diagram of the digestive system (photo by Stan Macdonald)

The next day, I was feeling more hopeful and my view was brighter too.

My endoscopy showed that my esophagus has been damaged by stomach acid. Two weeks ago my neurologist increased my omneprazole dose to twice a day. That is a good dose for me and my esophagus should heal quickly. Now hoping that the reintroduction of the drug I stopped in August and/or the Omeprozole will ameliorate my mucus problem.

Tag: living with ALS