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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2 thoughts on “ALS Advocacy Day

  1. Linda Thompson says:

    Thank you for letting us know how it went in DC. You write so well! Good to hear about the breakthrough for familial ALS.
    Linda T

    Like

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