Claire
Active member
- Joined
- Feb 3, 2010
- Messages
- 31
- Reason
- CALS
- Diagnosis
- 11/2009
- Country
- US
- State
- NJ
- City
- Whitehouse Station
Hello, Friends,
We’re back from the cruise, and we’re both in one piece with wonderful memories. We faced a number of challenges, but we were able to overcome all of them in one way or another. I must say, though, that we couldn’t have survived well on the cruise without my two brothers and their wives. The handicap cabin on Royal Caribbean was wonderful, and I must say that the “ride in” shower was great- for both of us. When we faced rough seas, I just took Greg into the shower, transport chair and all, and when we were done, he rested, and I dried off the part of the chair that needed drying by using the blow dryer. The second night out on the cruise was very interesting. I wasn’t sleeping well because of the rocking and creaking of the ship, and Greg was up too – probably because I kept saying, “Honey, are you up too?” It was around 4 in the morning. All of a sudden we heard a loud bang-like noise, and the ship listed to the starboard side. My glasses, book and alarm clock came crashing off the night stand and went under the bed. The bottles and cans that we had on the counter in the bathroom all came crashing down. Once I found my glasses and started to go to the bathroom to pick up things, I realized that I was walking uphill. Instead of picking up all the stuff, I just got back into bed with hubby, and we decided that we were going to stay where we were until we heard that we had to do differently. The ship stayed listed for a good five minutes, but we were able to stay calm. Once the ship was righted, the captain came on the intercom and explained that the ship was hit with a 100 mph wind, and the autopilot couldn’t control the sudden force but he assured us that the ship was totally under control again. Thankfully, if this had to happen it happened during the early morning, so injuries were kept to a minimum – several arms in slings, cut feet, bumps on heads, etc. But the liquor and cosmetics stores didn’t fare too well. And several jewelry cases were shattered from chairs that slid across the promenade deck. One guy was in the hot tub on the 12th deck and his wallet and some clothes were blown off the ship (perhaps alcohol was involved?!)
Even though we had that “anytime eating” we made reservations for whatever time the night before, and the six of us were seated at the same table each night with the same staff.. By the second night, as soon as the waiter saw us coming, he removed a chair from the table so that we could slide Greg in place in his chair, and that first night, when I asked for my main entrée to be served after Greg’s, the waiter asked me why. When I explained the situation, he told me that that was his job, and from the first night he cut Greg’s food without asking.
Although we hadn’t planned on getting off the ship in San Juan because we arrived at four in the afternoon, one of my brothers did a jog to the end of the pier and came back and said that we were all going for a walk. He found a nice little outdoor sitting area next to a bar/grocery store, and we sat around drinking Puerto Rican beer. We also got off the ship in Saint Thomas – the guys to taste the local beer and buy package goods to take home, and the ladies to go shopping at the mall that is quite close to the dock. Hubby did go into one jewelry store with me to pick out bracelets that he wants to give our girls. He’s such a sweetheart. We didn’t get off the ship in Samana, but it was great just sitting in the sun and sipping on beverages for the afternoon. That evening, though, we had an incident – somehow Greg slipped out of his chair. I couldn’t lift him back into it, so I had to lower him to the floor. We used the emergency button in our cabin, and the phone rang and a person asked what was wrong. I explained that my husband was on the floor and I needed assistance getting him up. After five minutes and no response, I called my brothers, and they both came to our cabin. While they were figuring out the best way to get Greg up, a security person came to the door and asked if we needed medical attention. When we said “no” he left. Thankfully, my brothers were able to get Greg up and into bed. The day we got to Royal Caribbean’s private island in Labadee it was raining on and off but that didn’t stop us from going to the beach. One brother arranged for a cabana as well as a sand wheelchair, and Greg was driven to the cabana by a Royal Caribbean staff member, and we were allowed to keep the chair with us all day which made bathroom visits for Greg much easier for my brothers. The island was beautiful, and we had lots and lots of laughs that day.
The alone time with Greg that I enjoyed most was our walk around Deck Four most mornings. When we got to the back of the ship, we parked the chair, and I helped him up so that he could hold onto the railing with his good hand and have a good up-close view of the ocean and the wake the ship was leaving. It was just like the walks we took on our other cruises, except this time my arm was around him instead of his around mine – and yes, we did have a few tears too.
For the most part, people were helpful and compassionate, holding elevator doors for us, stepping to the side so that we could pass, and making way for us when we went into a restaurant or bar. Greg always enjoyed watching the ship dock, so before the docking in San Juan, we went out to the fourth deck, but found that all the railing space was filled up. We started to go toward the other side of the ship when one woman came over to us and said that her husband was saving a place for Greg. This couple squeezed over so that Greg could stand at the railing and watch the ship dock. I must say, however, that the few rude people were taken care of in short order by my brothers. In one case, we were waiting and waiting for an elevator that we could all fit in with the chair. Finally one came and as my brother started to push Greg into the elevator, along comes this group of people who cut right in front of him and by the time they got in, there was no room for us! My brother explained to them that we had been waiting for a while for the elevator and that it was only right that they should wait their turn.. They told him that we could take the next elevator. So what does my brother do? He has a stand-off with them. He had the chair half in the elevator, and as long as he was in that position, the elevator doors couldn’t close, so no one was going anywhere. My brother won.
For those of you who might be thinking of a cruise, here are things we would have done the same and things that we would have done differently:
-Would have rented a wheelchair or scooter instead of using the transport chair throughout the cruise.- transport chair was difficult to push in the carpeted hallways, and our cabin was in the middle of the ship – long walk to either bank of elevators. I almost catapulted hubby out of the chair on one of the sills and getting in and out of the room was tough.
-Would have gone on a plane to take a cruise out of Florida where the waters are calmer rather than taking the ship from Bayonne and having three days in the Atlantic going to the islands and two days back. The rocking of the ship made walking difficult and downright dangerous at times.
-Taking the wedge for the bed worked well. We were able to put it under the mattress on his side of the bed. We also took his drinking cup and his gait belt - both were useful.
It is a good thing that we went on the cruise when we did. Both my brothers and I were able to see a definite decline in Greg's abilities. By the time we got home, hubby was unable to lift a fork or a glass to his mouth. (on the cruise he ordered a pint of beer one afternoon and he used a straw to drink it rather than have me lifting the glass to his mouth). He is barely able to walk even with the cane in one hand and me holding him with the other, and on the last day of the cruise, his pills started sticking in his throat. This freak’n disease is always throwing curve balls at you when you least expect it. We go to the team ALS appointment tomorrow, and it appears that we’re going to have to get some help in our home and some additional equipment. I’m having a harder and harder time lifting him, and he is obviously getting weaker. I am so glad that we made this trip and these memories. . . Thanks to all of you for wishing us well. It does mean a lot to know people understand the situation. Love to all. Claire
We’re back from the cruise, and we’re both in one piece with wonderful memories. We faced a number of challenges, but we were able to overcome all of them in one way or another. I must say, though, that we couldn’t have survived well on the cruise without my two brothers and their wives. The handicap cabin on Royal Caribbean was wonderful, and I must say that the “ride in” shower was great- for both of us. When we faced rough seas, I just took Greg into the shower, transport chair and all, and when we were done, he rested, and I dried off the part of the chair that needed drying by using the blow dryer. The second night out on the cruise was very interesting. I wasn’t sleeping well because of the rocking and creaking of the ship, and Greg was up too – probably because I kept saying, “Honey, are you up too?” It was around 4 in the morning. All of a sudden we heard a loud bang-like noise, and the ship listed to the starboard side. My glasses, book and alarm clock came crashing off the night stand and went under the bed. The bottles and cans that we had on the counter in the bathroom all came crashing down. Once I found my glasses and started to go to the bathroom to pick up things, I realized that I was walking uphill. Instead of picking up all the stuff, I just got back into bed with hubby, and we decided that we were going to stay where we were until we heard that we had to do differently. The ship stayed listed for a good five minutes, but we were able to stay calm. Once the ship was righted, the captain came on the intercom and explained that the ship was hit with a 100 mph wind, and the autopilot couldn’t control the sudden force but he assured us that the ship was totally under control again. Thankfully, if this had to happen it happened during the early morning, so injuries were kept to a minimum – several arms in slings, cut feet, bumps on heads, etc. But the liquor and cosmetics stores didn’t fare too well. And several jewelry cases were shattered from chairs that slid across the promenade deck. One guy was in the hot tub on the 12th deck and his wallet and some clothes were blown off the ship (perhaps alcohol was involved?!)
Even though we had that “anytime eating” we made reservations for whatever time the night before, and the six of us were seated at the same table each night with the same staff.. By the second night, as soon as the waiter saw us coming, he removed a chair from the table so that we could slide Greg in place in his chair, and that first night, when I asked for my main entrée to be served after Greg’s, the waiter asked me why. When I explained the situation, he told me that that was his job, and from the first night he cut Greg’s food without asking.
Although we hadn’t planned on getting off the ship in San Juan because we arrived at four in the afternoon, one of my brothers did a jog to the end of the pier and came back and said that we were all going for a walk. He found a nice little outdoor sitting area next to a bar/grocery store, and we sat around drinking Puerto Rican beer. We also got off the ship in Saint Thomas – the guys to taste the local beer and buy package goods to take home, and the ladies to go shopping at the mall that is quite close to the dock. Hubby did go into one jewelry store with me to pick out bracelets that he wants to give our girls. He’s such a sweetheart. We didn’t get off the ship in Samana, but it was great just sitting in the sun and sipping on beverages for the afternoon. That evening, though, we had an incident – somehow Greg slipped out of his chair. I couldn’t lift him back into it, so I had to lower him to the floor. We used the emergency button in our cabin, and the phone rang and a person asked what was wrong. I explained that my husband was on the floor and I needed assistance getting him up. After five minutes and no response, I called my brothers, and they both came to our cabin. While they were figuring out the best way to get Greg up, a security person came to the door and asked if we needed medical attention. When we said “no” he left. Thankfully, my brothers were able to get Greg up and into bed. The day we got to Royal Caribbean’s private island in Labadee it was raining on and off but that didn’t stop us from going to the beach. One brother arranged for a cabana as well as a sand wheelchair, and Greg was driven to the cabana by a Royal Caribbean staff member, and we were allowed to keep the chair with us all day which made bathroom visits for Greg much easier for my brothers. The island was beautiful, and we had lots and lots of laughs that day.
The alone time with Greg that I enjoyed most was our walk around Deck Four most mornings. When we got to the back of the ship, we parked the chair, and I helped him up so that he could hold onto the railing with his good hand and have a good up-close view of the ocean and the wake the ship was leaving. It was just like the walks we took on our other cruises, except this time my arm was around him instead of his around mine – and yes, we did have a few tears too.
For the most part, people were helpful and compassionate, holding elevator doors for us, stepping to the side so that we could pass, and making way for us when we went into a restaurant or bar. Greg always enjoyed watching the ship dock, so before the docking in San Juan, we went out to the fourth deck, but found that all the railing space was filled up. We started to go toward the other side of the ship when one woman came over to us and said that her husband was saving a place for Greg. This couple squeezed over so that Greg could stand at the railing and watch the ship dock. I must say, however, that the few rude people were taken care of in short order by my brothers. In one case, we were waiting and waiting for an elevator that we could all fit in with the chair. Finally one came and as my brother started to push Greg into the elevator, along comes this group of people who cut right in front of him and by the time they got in, there was no room for us! My brother explained to them that we had been waiting for a while for the elevator and that it was only right that they should wait their turn.. They told him that we could take the next elevator. So what does my brother do? He has a stand-off with them. He had the chair half in the elevator, and as long as he was in that position, the elevator doors couldn’t close, so no one was going anywhere. My brother won.
For those of you who might be thinking of a cruise, here are things we would have done the same and things that we would have done differently:
-Would have rented a wheelchair or scooter instead of using the transport chair throughout the cruise.- transport chair was difficult to push in the carpeted hallways, and our cabin was in the middle of the ship – long walk to either bank of elevators. I almost catapulted hubby out of the chair on one of the sills and getting in and out of the room was tough.
-Would have gone on a plane to take a cruise out of Florida where the waters are calmer rather than taking the ship from Bayonne and having three days in the Atlantic going to the islands and two days back. The rocking of the ship made walking difficult and downright dangerous at times.
-Taking the wedge for the bed worked well. We were able to put it under the mattress on his side of the bed. We also took his drinking cup and his gait belt - both were useful.
It is a good thing that we went on the cruise when we did. Both my brothers and I were able to see a definite decline in Greg's abilities. By the time we got home, hubby was unable to lift a fork or a glass to his mouth. (on the cruise he ordered a pint of beer one afternoon and he used a straw to drink it rather than have me lifting the glass to his mouth). He is barely able to walk even with the cane in one hand and me holding him with the other, and on the last day of the cruise, his pills started sticking in his throat. This freak’n disease is always throwing curve balls at you when you least expect it. We go to the team ALS appointment tomorrow, and it appears that we’re going to have to get some help in our home and some additional equipment. I’m having a harder and harder time lifting him, and he is obviously getting weaker. I am so glad that we made this trip and these memories. . . Thanks to all of you for wishing us well. It does mean a lot to know people understand the situation. Love to all. Claire
