ALS Advocacy Day

IMG_0270As 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.

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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.

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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