This one is a little different. I thought that I would post a video blog entry. I began to realize that I have almost no recordings of my voice. So I did this to compare my voice now with Fall 2010. Then I got the bright idea to show you how I eat.
My voice sounds different from day to day. On this video, my voice is much lower in the feeding segment. I had been coughing all day. Gerrí suggested that we do it on a different day because she said that yesterday was a bad day for being understood. I found that it was actually pretty easy to understand. Some days it sounds like all of the sound is coming through my nose, as if I had a cleft palate. Every day is a new adventure.
I am using my whiteboard or my iPad more often to help if the other person is just not getting it. We had the kids over on Sunday night and I ended up using both the whiteboard and the iPad.
Here you go: http://youtu.be/ELVYVwzZRgs
My name is Kevin Taylor. I live in Draper, Utah with my sweet wife, Gerrí. We have been married for 41 years. I'm 64 and healthy in every way with one exception. I have Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's Disease. I was diagnosed with ALS in May, 2012. It seems like this might be a good way to share my experience with family and friends. I'm calling this blog "Kevin LIVES with ALS" because that is what I intend to do.
Wednesday, March 27, 2013
Maui - January 2013
I mentioned in the last post that I would write about how ALS affected our trip to Maui. So . . .
These are some of the things we like to do in Maui:
1) snorkel
2) boogie board
3) eat fresh fish
4) relax on the beach
5) look for sea glass on the beach
6) whale watching
7) walk up and down Front Street in Lahaina
8) absolutely nothing
1) The snorkeling was great. The weakness in my legs made it more difficult to get in and out of the water. If there was any kind of shore break, the waves just knocked me over. We managed to do some snorkeling at Kapalua Bay, but the waves were up a bit so I just about drowned getting situated in the water with my snorkel and fins on. Once I was in, everything was great. Because it's harder for me to deal with the waves we spent most of our snorkeling time at mile marker 14 - the Olawalu area south of Lahaina. The water is really flat in that area, even if the waves are kicking up elsewhere on the island. And, there is a really nice reef there with lots to see, including turtles. Tiger sharks like turtles, so warning signs are posted along that beach. I know this to be true, because one time I swam with a turtle that had one of its front flippers missing. We also went to Makena to see if we could snorkel there, but the waves were bigger than at Kapalua, so we didn't snorkel there. Too bad - because we almost always see turtles there. They have a new (to me) snorkel out that has two separate tubes - one for inhaling and the other for exhaling. There are little valves that seal on the inhale side when you exhale and visa versa. Last year I was having some trouble breathing with the old style snorkel. This new development made breathing easier. I was not able to dive down and get stuff because my leg strength couldn't get me down there. I found that I was moving around mostly with my arms, which worked fine. If there had been any kind of semi-strong current, I'm not sure I would have been able to depend on the fins. So snorkeling went pretty well and we had lots of fun.
3) We ate lots of fresh fish! In fact just about every meal except breakfast included fish. Mahi mahi, Ono, Opah, Opakapaka, etc., etc. We had it fried, sauteed, broiled, in tacos - just about any way they can prepare it. It's all good. I had to eat slowly, and I didn't always finish the meal, but it was great. It is a good thing that we went when we did because now I'm eating through a tube in my tummy. (see next blog post)
4) Relaxing on the Beach - no problem !!!
5) Looking for sea glass requires walking around on the sandy beaches. I found that the way my legs are now, my foot prints in the sand are different. Normally, you see the whole foot, with the deepest part of the print at the toe. My foot prints were all heel. It made it tougher, but it also stretched my calf muscles, which felt good. So we had fun and got exercise, but we didn't find as much glass as past years.
6) In Maui, from December to April, the whales come to Hawaii to have their calves and to mate. We can just sit on our lanai and watch the whales. They are everywhere! But every time we go, we do at least one trip with Ultimate Whale Watch. We like these people - they are fun and knowledgeable. Their boat is a small pontoon boat which makes it really easy to move from one place to another - compared to the big cruisers that some of the whale watch tours sail with. We always see whales up close. This year was no different.
7) We didn't spend as much time in Lahaina Town. I walked really slow - with lots of resting every few minutes. (I used my walking stick, but I didn't have my AFO Orthotic/Brace until we got back.)
8) Absolutely nothing - no problem !!!
I'm glad that we have been to Maui and Kauai many times over the years. I strongly recommend that you go now, and not wait until some future ideal time to go, like when the kids are grown up or when you are retired. If I had waited until being retired I would have missed out on so much. And . . . it is fine to take the kids or go with the entire family, or friends - now and then. We have taken the whole family, and the kids on some of these Hawaii trips, and we are glad we did. But, we really cherish the times that Gerrí and I have spent there - just the two of us. So, don't worry about the kids - they get over the fact that you left them home - I promise. And, in fact, my kids always knew that we would spend some vacation time without them. Our first trip together to Hawaii was in 1986 to see Halley's comet when Joey was only 2 years old. We just tied him up outside with the dog, and he did fine (JUST KIDDING). When we got married in the Salt Lake Temple, the officiator counseled us to always plan time away from the kids. We have always followed that advice. The kids say that it has showed them how much we love each other.
These are some of the things we like to do in Maui:
1) snorkel
2) boogie board
3) eat fresh fish
4) relax on the beach
5) look for sea glass on the beach
6) whale watching
7) walk up and down Front Street in Lahaina
8) absolutely nothing
(Note: Don't mind Gerri's hand sign. She recently joined a gang.
My hand sign is the correct "hang loose" sign.)
2) Unfortunately, boogie boading is out - at least on Fleming Beach where I love to boogie board. Boogie boarding requires a lot of leg strength to stabilize myself against waves as I am waiting for the wave I want, and then getting a good kick when the desired wave comes. I'm useless in the waves. Too bad.
3) We ate lots of fresh fish! In fact just about every meal except breakfast included fish. Mahi mahi, Ono, Opah, Opakapaka, etc., etc. We had it fried, sauteed, broiled, in tacos - just about any way they can prepare it. It's all good. I had to eat slowly, and I didn't always finish the meal, but it was great. It is a good thing that we went when we did because now I'm eating through a tube in my tummy. (see next blog post)
4) Relaxing on the Beach - no problem !!!
5) Looking for sea glass requires walking around on the sandy beaches. I found that the way my legs are now, my foot prints in the sand are different. Normally, you see the whole foot, with the deepest part of the print at the toe. My foot prints were all heel. It made it tougher, but it also stretched my calf muscles, which felt good. So we had fun and got exercise, but we didn't find as much glass as past years.
6) In Maui, from December to April, the whales come to Hawaii to have their calves and to mate. We can just sit on our lanai and watch the whales. They are everywhere! But every time we go, we do at least one trip with Ultimate Whale Watch. We like these people - they are fun and knowledgeable. Their boat is a small pontoon boat which makes it really easy to move from one place to another - compared to the big cruisers that some of the whale watch tours sail with. We always see whales up close. This year was no different.
7) We didn't spend as much time in Lahaina Town. I walked really slow - with lots of resting every few minutes. (I used my walking stick, but I didn't have my AFO Orthotic/Brace until we got back.)
8) Absolutely nothing - no problem !!!
I'm glad that we have been to Maui and Kauai many times over the years. I strongly recommend that you go now, and not wait until some future ideal time to go, like when the kids are grown up or when you are retired. If I had waited until being retired I would have missed out on so much. And . . . it is fine to take the kids or go with the entire family, or friends - now and then. We have taken the whole family, and the kids on some of these Hawaii trips, and we are glad we did. But, we really cherish the times that Gerrí and I have spent there - just the two of us. So, don't worry about the kids - they get over the fact that you left them home - I promise. And, in fact, my kids always knew that we would spend some vacation time without them. Our first trip together to Hawaii was in 1986 to see Halley's comet when Joey was only 2 years old. We just tied him up outside with the dog, and he did fine (JUST KIDDING). When we got married in the Salt Lake Temple, the officiator counseled us to always plan time away from the kids. We have always followed that advice. The kids say that it has showed them how much we love each other.
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