On the Road Again

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.

Pass the meatloaf

The past week has been pretty full.  Getting ready for appointments can be exciting and fun.  It’s also tiring.  Last Sunday we gained an extra hour.  It felt great.  I got an extra hour of sleep and was able to make it to church after weeks of non-attendance.  I saw old friends and met some new ones.  But after just a short time out I was feeling tired.  I’m not sure if it was all the talking, change in medications, or just that old beast, ALS, but I just wanted to go home and vegetate.  My way of sneaking back home was to suggest that we grab a fast food meal to take home for dinner later.  Joe suggested we go out to dinner.  I reluctantly agreed.

You see, many people know that my husband Joe likes food.  He enjoys cooking and trying new foods.  I never really was a culinary adventurer until I met him.  A favorite phrase of his is Food is Love.  His suggestion turned out to be a good one for more reasons than just one.

We went to an Italian Restaurant.  It was one of the better Italian restaurants considering our locale.  The menu wasn’t designed to accommodate my idea of easy-to-eat foods while dining out so I was already planning to skip the appetizer.  Joe nudged me into revealing that the caprese salad really did interest me.  My fear of struggling to cut the tomatoes was gone when Joe agreed to eat the tomatoes leaving the mozzarella for me.

The tables were far enough apart to give us our own space.  Joe commanded most of the conversation since talking and eating are not my thing anymore.  ALS with its frustrating speech and swallowing problems can really help you become a better listener.  We enjoyed our meals.  We lingered over our meals.  His was espresso chili rubbed filet.  Mine was polpettone di carne or for us non-Italians,  Italian meatloaf with smoked mozzarella and fried parmesan polenta, also described as meatloaf made in heaven.  It remains a wonderful and tasty memory.

As it turned out, the meal was not the most important part of evening after all.  It did, however, make for an intimate dinner in a perfect atmosphere.  It helped transform the evening for me and was just what we needed.  My husband got a break from cooking and cleaning up.  I was able to take as much time as I needed to eat.  Gone was that tired feeing of earlier in the afternoon.  We spent time without wasting words.  We enjoyed each other’s company.  And those troublesome tomatoes tasted even better because they were fed to me by the man I love.

If you’re in the neighborhood of Cary, NC, I recommend the meatloaf at Lugano Ristorante.

P.S. The photo is not Lugano’s meatloaf.  Their presentation is indescribable and delicious.

Trick-or-Treat

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.

Staff at the ALS Multidisciplinary Clinic dressed to mimic the clinic’s director, Dr. Richard Bedlack (front center)

So in between visits by various costumed (Halloween vs. medical) garbed personnel, I also earned about oral hygiene (another problem), got my wheelchair adjusted, and discussed physical therapy.  There was probably some other important stuff I missed.  I can only thank God that between my doctor and my husband, someone is looking out for my well-being.  I’m too busy living to dwell on dying.  The trick is on you, ALS.

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¹Steve Gleason played professional football for The New Orleans Saints from 2000-2008.  He was diagnosed with ALS in 2011.  His foundation is a charitable 501(c)(3) non-profit corporation.

References

eyetracking.com (2011).  About Us: What is Eyetracking?  Retrieved November 4, 2017 from http://www.eyetracking.com/About-Us/What-Is-Eye-Tracking