ALS Awareness Month

ALS Awareness Month- Never Lose Hope

“You don’t lose hope, love. If you lose hope, you lose everything.”Mrs Potts , Belle’s Magical World

ALS Awareness month comes to a close today, but patients, caregivers and loved ones of those with ALS continue to live with the physical and emotional effects of the disease. August will mark two years since Ben left this world, free from his struggle with the disease. I want to conclude this month by offering this wisdom from Mrs. Potts of Beauty and the Beast fame.

I have written often about Ben’s bravery and persistence. It has taken me a long time to come to understand that I was brave in a different way. And, I can honestly say that hope played a tremendous part in our lives. There was hope that things would get better and we would find innovative ways to help him eat, use his electronics, and maintain a good quality of life. There was hope that the next day would be less stressful. There was hope that each day would have some smiles and laughs. There was hope that I would remain patient. There was hope that Ben would accept that his needs were increasing. There was hope that he would have more time. There was hope that the disease would progress slowly. There was hope that he would transition peacefully.

Was it naïve to hope? Was it like my tossing coins in Cinderella’s Wishing Well? I don’t think so. To wish is to hope, and I have often written about wishes on this blog. Hope allowed me to reach for optimism. It allowed me to see the positive things, even if the big picture was not good. It allowed me to recognize and be relieved and content that one day was better than the prior one, not because the ALS was getting better or going away, but maybe because we were in better moods or successfully solved a problem. Hope allowed me to fantasize in a healthy way, remembering wonderful times and trying to recreate those and create new ones. It allowed me to be a creative thinker. It allowed me to smile, even through tears.

Hope was my pixie dust. Because I had hope, I was able to open my mind to finding ways to help Ben and to help myself. Hoping beyond hope that Ben would transition peacefully gave me the mindset to work towards making that happen. Love let me cope with the moments when hope was waning.

Hope also has helped me get through grief. It has allowed me to envision a positive future without Ben but with love. It allows me to seek opportunities to help others who are dealing with ALS.

I still have hope and I do make wishes. I hope that I always honor Ben’s memory in a way that he would appreciate. I hope that my blog and interactions with people affected by ALS will help and comfort them. I hope that I will find love again. I hope beyond measure that a cure will be found for this horrible disease.

In a way, hope is a gift, because it allows you to escape some harsh realities. I hope that all of my readers who are affected by ALS will find ways that inspire you to be hopeful and to see past the dark clouds to clear your mind, if only temporarily. There are reasons to be hopeful as we look at the research being done. There is also hope for comfort and the future as we look at the communities and forums of supportive and caring people that connect us because we share a deep bond of understanding and empathy.

Yes, ALS Awareness Month is ending. But, I hope that the determination never wanes to continue to raise awareness of ALS and the brave battles fought by people like my Ben.

I agree with Mrs. Potts. If you lose hope, you lose everything.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Wishing Well

2011- A visit to the Wishing Well at Cinderella’s Castle to wish for a cure for ALS.

An ALS Journey Through a Disney Lens

Walt Disney World, Halloween

Ben and I at Walt Disney World, Halloween 2011

On this blog I write about my experience as a caregiver dealing with my husband Ben’s journey with ALS.  Since May is ALS Awareness month, and Walt Disney World was our most special place, I thought I would use our experiences there to shed a bit more light on how ALS affected Ben over the nearly six years that he bravely managed the disease. It was important to Ben to maintain a positive attitude, and to enjoy his life as much as possible. Of course, he had his very emotional moments and times of supreme frustration and anguish, and at times, he lived in denial of what was happening, but he wanted to live and die with ALS on his own terms. I remain in awe of his ability to do just that and I am proud to be able to share his story.

Ben was diagnosed in April 2010 but had been experiencing symptoms for at least a year prior- falling, weak legs, imbalance. A terminal diagnosis is a frightening thing, and since ALS is rare, we were blindsided and devastated.  ALS is also unpredictable in its progression, so we had no idea what our next steps should be. We didn’t know how much time we had, so we immediately booked a trip to Walt Disney World, our favorite place. It was emotional, and although we were excited to go there, we also knew that we were taking this trip because it might be our last time.

Planning this trip was the first time that we had to think about problems Ben might have and adjustments that we would need to make to our lives. For example, He was still walking on his own, but knowing how much walking is done at the parks and how tired he got, he rented a wheelchair that was delivered by the vendor to our hotel.  Ben’s dexterity was good at this point, and he was able to use the computer, so he made his own arrangements for the wheelchair and for some of our dining reservations. It was good for him to feel productive and capable, especially doing something he loved!  Getting around the airport was a little bit daunting, so we requested wheelchair assistance and a customer service representative escorted us to the boarding area. I was able to help him in and out of his seat on the plane.

Fortunately, at this early stage of ALS, there were not too many logistical issues to consider at the parks. I arranged to take an accessible Magic Express bus (Walt Disney World’s own transportation) from the airport to the hotel. He laughed on the bus lift and made it fun. As he struggled to move around the hotel room with the wheelchair, he realized that a scooter was in order and a switch was very easily arranged. There are local vendors that work well and often with the properties and easily manage delivery and pick-up.  Rather than lament the need for the scooter, Ben completely embraced it and absolutely loved scooting around. I think he also enjoyed seeing me trying to catch up with him!

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Epcot

2010- First use of the scooter to go to Epcot.

This was also our first endeavor to relive great memories and create new ones. We splurged and stayed at the deluxe hotel we had always thought about, the Boardwalk Inn. Not only is it beautiful, but the Boardwalk itself is a nice surface for scooting and Ben loved to look out on the lagoon. It was also convenient to scoot to the back entrance of Epcot, by the World Showcase, Ben’s favorite place at Epcot, because there were not too many attractions to ride and he had the freedom to enjoy the surroundings. He also loved listening to the live bands, especially at the England pavilion, where they played a lot of Beatles music.

At the Magic Kingdom, the first ride that we had to give up was Peter Pan’s Flight because it does not stop for loading and Ben’s balance was shaky. He suggested that I ride it alone, but it would not have been the same without him. Ben loved Pirates of the Caribbean, and that ride requires a large step down and then a big step up. I was able to help him down into the boat with little problem, but getting him out of the boat required the assistance of a cast member and other very kind passengers. That was his last voyage. The good news was that his other favorite attraction, the Haunted Mansion, was able to stop to load the doombuggy. The cast members were incredibly gracious and accommodating throughout the parks.

We both shed tears at the beautiful parade on Main Street, with its happiness, hope and the magic that is Disney. It was overwhelming given our circumstances, but we were so grateful to be in our favorite place.

We loved to eat at the Crystal Palace and see Winnie the Pooh and his friends. It’s a buffet, and Ben was able to eat everything and enjoy the meal, with the only accommodation being that I had to carry Ben’s plate. And, Pooh and his friends sat with him when he had difficulty standing, even Tigger, who really does prefer to bounce! Ben was still able to hold the camera to take photos, which was also something that he loved to do.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Crystal Palace, Magic Kingdom

2010- Standing to meet Tigger at the Crystal Palace!

I think the most emotional moments were with our Disney friends. First, when we met Mickey Mouse we completely broke down. Being at Walt Disney World is entering the fantasy. We needed a fantasy and being with Mickey Mouse is believing that he can sprinkle some of that Disney magic. One of the cast members was especially sensitive, and he pulled me aside and handed me a “ruby” that the dwarfs got in the mine, and he said he wished it would bring us good luck. I still have that ruby. I believe that the luck it brought was 4 of 6 years where Ben managed his ALS symptoms well.

I remember spotting Buzz Lightyear, Ben’s favorite Disney super hero. Ben did not want to meet him, saying Buzz was strong and he felt weak and embarrassed. I had not heard Ben speak like that and it broke my heart. You may not understand that and you might be saying that this is merely an actor in costume. But, to Ben, Buzz symbolized the strength and capability that he was losing.

With a scooter, rain is more of a consideration, so we panicked during the heavy but brief downpours. There was a learning curve of remembering to bring plastic covers with us, charging the scooter at night and bringing the charger with us in case we needed to recharge during the day. Ben was quite a trooper in his Mickey rain poncho!

2010- Adjusting to the rain and using the scooter was more fun with a Mickey Mouse rain poncho!

The monorail and boats are easily accessible, and the buses could also accommodate the scooter, so we were able to travel from hotel to park and from park to park without transportation issues. Bus passengers were not always patient, but drivers and cast members were amazing. Everything took a little bit longer, but we were able to enjoy our time with so much freedom.  We really enjoyed being able to scoot or take a boat to Epcot and Hollywood Studios from the Boardwalk.

ALS,Caregiver,ALS Awareness Month,Walt Disney World

Ben loved riding the monorail!

 

I made a promise to Ben that for as long as he could, we would spend every Halloween at Walt Disney World, our favorite time to be there. Ben’s ALS had not progressed much over the summer, which was such a relief, and we decided to return to Walt Disney World in October 2010, just five months after our last visit. Looking back, a sadness and fear loomed over everything, as we wondered but did not discuss our worry that this might be the last opportunity to do everything that we loved. We continued to use a wheelchair in the airport, but I was still able to help Ben on and off the plane. At Walt Disney World, thankfully, there was not much of a difference in Ben’s abilities from spring to fall, except that his legs got tired more quickly. Ben still rode around the parks in the scooter, but was able to walk with a cane around the shops and restaurants.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Pirates

2010- Ben was having trouble on Pirates of the Caribbean, but he still loved pirates!

Some of the attractions had a different line for people with disabilities, which helped with the waiting time, and Ben stayed in the scooter or transferred to a wheelchair until our turn. Disney has since changed its policies on special passes for people with disabilities, but Ben never wanted one, and it bothered us to know that people took advantage of this pass simply to beat the line. He was fine to wait his turn, he only wanted the ability to stay seated for as long as possible. I always got the pass because I thought it might help in the case of an emergency.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2010- Ben was so happy to be at the Boardwalk Inn and to look out on the lagoon.

This time, when we saw Buzz Lightyear, Ben was ready to meet him. Ben was dressed for the Halloween party in his Buzz Lightyear t-shirt and he used his cane to walk up to Buzz, who made a big fuss of how they were dressed alike. Ben had a wonderful time and it was great to watch him laughing.

Our favorite part of Walt Disney World was Mickey’s Not-So-Scary Halloween party. We were like two little kids trick-or-treating and comparing our candy. Being in the scooter earned Ben extra loot and he loved that! The decorations were fabulous, and the character dance parties were so spirited.  The Halloween parade was Ben’s favorite event, and he often played the music at home. “Boo to you” was one of his most used expressions. I still say it and smile thinking of him.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

It was very important- I guess symbolic- for Ben to stand in front of the Castle.

We made a point of visiting the Wishing Well at Cinderella’s Castle during this visit.  I have written before that with a diagnosis like ALS, you want to take any opportunity to wish or hope for a cure. Was it silly? Maybe.  But it was hopeful. And we needed to be hopeful. Do I still wish for a cure? Every single day. Click here for my post on wishes.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Wishing Well

An important visit to the Wishing Well at Cinderella’s Castle that became a ritual- wishing for a cure for ALS.

We returned to Walt Disney World three more times. We stayed at the Boardwalk Inn for each visit except for the fourth one, when we stayed at the Beach Club, which was across the lagoon from the Boardwalk and also quite nice. And, there we got to enjoy a character breakfast, which was a nice plus. The restaurants were great about letting Ben scoot up to our table so he could more easily transfer to a chair. The staff or I then parked the scooter.

Our third post-ALS visit was Halloween 2011. The airport was a little bit more difficult to manage because I had to carry the bags and wheel Ben around. He could no longer attempt to walk through the scanner by himself. I am always nervous when I fly, but security and the JetBlue staff were great and helpful. I called the airline a few times to confirm everything about our travel arrangements. It was much more difficult than I anticipated to help Ben to stand given the confines of the aircraft seating and the fact that I could not stand in front of him to lift him. The flight attendants were patient and helpful, and one man confided with tears in his eyes that his brother also had ALS but was in a more advanced stage than Ben. The accessible Magic Express bus from the airport to hotel was a necessity, but Ben always enjoyed that brief ride on the bus lift and treated it like a Walt Disney World attraction.

At the parks, Ben stayed in the scooter most of the time, except to transfer to a chair in a restaurant or to a wheelchair to get onto certain attractions. Fortunately, the parks are filled with accessible restrooms and I could help him when necessary. For me, a noticeable and sad change was that Ben did not always want to get out of the scooter for photographs with our Disney character friends.  He did insist on standing and walking to Mickey and Minnie, which I found so sweet.  I cried when Mickey walked to the scooter to escort Ben to the stage for the photo. Mickey and Minnie hold all of the magic and reason to believe. And we really wanted to believe that things would get better.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- Mickey’s Not So Scary Halloween Party. I held Ben on one arm and Minnie held him on the other!

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Tigger

2011- Slight change in photographs, with Ben opting to remain seated.

Ben was still able to enjoy Buzz Light Year Space Ranger Spin, but he could not use the lasers very well. We continued to go to the Haunted Mansion, and Ben was thrilled that they revised the loading path so we could enjoy the entire attraction. He joked that one day he would be a grim grinning ghost, and although it was morbid, I like to picture him there! He did give up going on Pirates of the Caribbean because it was very hard to help him onto the boat, not just because of his balance, but also because his feet had gotten quite swollen and it was hard to maneuver them into the small space on the boat. We felt that it was unfair, and potentially unsafe, to rely on cast members or guests to provide assistance with lifting him. I was so impressed that he never dwelled on disappointment in what he could not do. Instead, he enjoyed the things he could do with complete delight.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, It's a Small World

2011- It’s a Small World allows a wheelchair to board the boat, and since that was so easy (and, ok, there are not long lines) we road it frequently! YAY!

The perks of having a scooter are getting to be seated before the big crowds converge, and getting a good spot at the parades, and Ben loved his Halloween parade! And, of course, lots of treats during Mickey’s Halloween party!

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Wishing Well

2011- A visit to the Wishing Well at Cinderella’s Castle to wish for a cure for ALS.

It is hard to believe, but we saw “Fantasmic!” at Hollywood Studios for the first time during this visit. We loved the show, and accessible seating with early entry made it a breeze to attend.

2011- The first time we went to Fantasmic!

We went to our favorite Mexican restaurant in Epcot, La Hacienda de San Angel, and they kindly found a table where we had plenty of room and some privacy, which helped when Ben was self-conscious about his eating. At this point, he was primarily able to feed himself, but occasionally needed help cutting food.  Anyone who saw me feeding him probably thought it was simply romantic! Overall, we put less emphasis on restaurant meals because eating was not fun for Ben anymore. We were at Epcot during the Food and Wine Festival, which was fun and practical, because we tried a wide variety of foods and he could see what worked for him and what did not. Also, because we were getting food at various kiosks and not seated in a restaurant, we could go to a bench where I could feed him in a discreet area, taking as long as we needed.

I will never forget being at the princess lunch at the Akershus restaurant in the Norway pavilion, after a trying morning where Ben was having a lot of trouble moving around and my back was aching. I spotted a little girl watching us as I struggled to help Ben into a chair and then to help him cut and eat his food. Most people did not notice us, but this one little girl did, and we didn’t want to her to be frightened, so we smiled at her and told her how cute she looked in her costume.  This also happened to be my birthday, and the waiter brought a cupcake and sang to me. The little girl came over to me and gave me a big hug and wished me a happy birthday. My eyes welled up, and when I looked at her mom, I saw her tears.  Words are not always necessary, but compassion is always a wonderful thing.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- This is one of my very favorite pictures of Ben because he was so full of happiness and laughter.

Halloween 2012 was a most magical trip to Walt Disney World, though things were becoming more challenging. We had stayed in an accessible room in 2011, but now we really needed it. We got much later starts to our days because washing and dressing took much more time. Ben’s feet were very swollen and just getting socks and sneakers on was a long process. Ben’s legs were much weaker during this visit, so lifting him to transfer was more difficult for me. It was humbling to have so many people come up to help me and to be so kind and good humored with Ben. I had to feed him most of his meals and he was afraid to eat some foods at this point because chewing and swallowing could be difficult.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2012- Main Street on Halloween was one of our favorite things to see.

It was during this visit that Ben proposed to me on Halloween, which he knew I would love. We had been together for twelve years but had not actually gotten legally married.  It was emotional, but we proudly wore our “Happily Ever After” buttons, knowing that we might not have a very long “ever after.” Maybe that was why it was even more important to have that symbolic connection. The day we got engaged, we went to Hollywood Studios and Ben met, for the very first time, his other favorite friend, Sully. Another emotional meeting.  I whispered to Sully that Ben loved him, and Sully came over to the scooter to try to help Ben up, which was heartbreaking and heartwarming. Sully escorted him to the stage for the photograph and it was truly touching. We made a holiday ornament from that photograph. Ben rarely got out of the scooter for photos, even with Mickey and Minnie.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Sully, Monsters Inc

2012- Sully escorted Ben for his photograph!

We gravitated to attractions like “It’s a Small World” and “Winnie the Pooh” because the wheelchair could go right onto the boat and honey pot. OK, that was a bit of a perk for me, since they are my favorite attractions! It is good news that the newer attractions are being built with that in mind.
For example, the new attraction for Journey of the Sea: Journey of The Little Mermaid has clamshells that seamlessly accommodate a wheelchair.  “Finding Nemo” at Epcot also has accessible clamshells.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Winnie the Pooh

2012- Mickey’s Not So Scary Halloween Party. Ben took center stage in the scooter!

Since Ben was homebound, just having the freedom to scoot around the parks was exciting to him. Navigating with the scooter was becoming more difficult for him, so I sometimes had to help him steer into a spot on the bus. We did have one mishap in a shop, when Ben suddenly lost control of the wheel and he plunged into a rack of clothing, causing it to collapse. We both panicked and felt horrible, but the cast members never skipped a beat and were very reassuring as they reassembled everything in a couple of minutes. Ben was completely unharmed but took an emotional hit because it signaled the loss of his arms and, therefore, of his options for movement. Still, he was persistent and determined and that was admirable.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse,Tigger

At the Crystal Palace buffet, Tigger hung out with Ben without bouncing.

 

Our last visit to Walt Disney World was in July 2014. My dad had passed away five months prior, and Ben was changing more rapidly, so I planned a visit for the summer. Walt Disney World in July was not ideal, but I had already missed many days of work caring for my dad and Ben. In June, Ben had finally agreed to hire a home health aide for a few hours a day during the week. Ben was homebound and could no longer walk. He could not use his arms much and his hands lacked much dexterity. The foods he ate were mostly pureed to a bisque-like consistency. There was more luggage, more expense, more caregiving responsibility and more to keep track of. We had to take an ambulette to and from the airport because the drivers could take Ben down the stairs of our building. This time, Ben did not have the dexterity or mobility to use a scooter, so he rented an electric wheelchair. We needed to bring assorted toiletries to the parks, as well as an insulated backpack with Ensure Plus in case we could not find enough food that Ben could eat. The ALS team suggested that I not travel alone with Ben, and I agreed, so I asked his home health aide to accompany us for the nine days in Orlando. I wrote about this most magical trip in a prior post and I invite you to Click here to read more about this visit. It may give you some ideas and will also give you some perspective.  There were definitely more emotional moments during this trip. Ben required more assistance with all daily life activities, including getting into and out of bed and rolling over, showering, toileting, transferring, and eating/drinking.  Having another caregiver with us did add a new dynamic. Ben’s biggest complaint was that it wasn’t romantic. There was truth to that, but for his safety and my own sanity, we needed to have another person to help out. And, in my mind, it allowed me to return to feeling like Ben’s wife instead of his caregiver, holding hands and enjoying our time without quite so much stress over caregiving responsibilities. Click here to continue reading about this visit.

Ben even had fun on the Magic Express wheelchair lift!

When people look at the pictures, they comment about how thin Ben got, and sometimes they see his very swollen feet. Living with him, I can’t say that I noticed those physical changes much on a daily basis at the time, though when I look at pictures now, I do see them. Mostly, I see Ben’s smile and his joy. After all of the ugliness of ALS, I think it is a gift to be able to say that.

The Dapper Dans were very cool! Ben always loved them.

These pictures do not reveal Ben’s last weeks in the hospital, when he got a feeding tube and a tracheostomy. They do not reveal our fear when he got an infection and pneumonia while in the hospital, shortly after these procedures. These issues were obviously more dramatic than those we encountered in Walt Disney World, and they are the issues that are generally discussed in relation to the progression of ALS. But, this glimpse into our visits to Walt Disney World offers a look at the subtle or small shifts in our daily lives that made significant impacts on Ben’s life with ALS. Maybe it seems trivial to write about Ben not eating the same foods or opting not to walk up to his favorite Disney friends for photographs.  However, these details symbolized sad milestones in the shrinking of Ben’s world and what mattered within it. The changes in our routines and diversions at Walt Disney World were the markers of how he was slowly succumbing to ALS.

When Ben ultimately ended up in the hospice/palliative care unit at Mount Sinai Medical Center in NYC, he was surrounded with favorite Disney toys, photographs and Halloween decorations from our hotel room back in July 2014. He loved those memories and I’m glad he could be comforted and delighted by them until his last moments on this earth. He could not change the fate of an ALS diagnosis, but he did a great job of controlling his attitude,  and he treasured the happy times and bravely navigated the journey on his terms.

I will continue to wish for a cure for ALS and I will continue to take any opportunity to raise awareness of the disease, even if it is in my Disney way.

Ben and I at Walt Disney World, July 2014