Wednesday through Saturday

What a day this has been! Poor Mary, our wonderful new care giver, was greeted today not with anticipation but with constipation. I'm pretty embarrassed to even mention the P__P word but in the world of ALS constipation is real. This was my first episode of constipation...... and it was painful. We did everything to remedy the situation until finally the storm was calmed and I found relief. WHEW! When I was healthy running, biking, swimming and surfing was an every day occurrence that constipation was not in the vocabulary. Now, foods that I eat will have to be high in fiber and soft enough to swallow. Not to mention drinking a lot of liquids. Thank you Mary, Daniel, Malia and Spike for being there and helping me today. Thank you also to Tina who, with great compassion, brought me some yogurt and a movie. Enough about that, now on to other things.

Last week my family from Hilo and Maui visited and stayed with me while Jan went to Bali. I had such a wonderful time with them all. My brother Al and sister in law Nancy from Maui arrived last Thursday evening and left on Sunday evening. We did a lot during the weekend including the tour of Shangrilla. The home of Doris Duke who created her home on the shores of Diamond Head around the Moslem culture. Her home was amazingly beautiful and she was not Moslem. If you get a chance, it's worth the visit. Jan returned from Bali on Monday and was back to work the next day. Everything is almost back to normal.

Okay it is now Saturday already and I did not get to complete my blog. Good thing Natalie and Daniel are here visiting me today and Natalie is taking over to help me complete this blog to get it out. Let's go back a couple of days.....

Thursday was the most beautiful swim day. The air was crystal clear after the down pour and the blue sky was bluer than ever. Heidi, Sandra, Rene, Karen and I stayed in the ocean for the longest time. Aunt Karen dared to put on her bathing suit and join us in the beautiful ocean. This was her first time ever to enjoy the ocean with us as she is usually sitting on the beach watching us. Good going Aunt Karen! Congratulations to Heidi for running a great race for Council Woman for her district. There were fourteen competitors and Heidi came out a whopping fourth place finisher which is great for an unknown. We are all proud of you Heidi. And, by the way, Heidi is our swim day photographer.





On Friday afternoon, I went to see my pulmonologist for my monthly visit and the results for my vital capacity were the same or better than the last one. See, I am hanging in there. I am also trying to use my AVAP as much as I can. Daniel is making sure that I follow through.

Today, Saturday, is a beautiful day. Lorie and Allen came up ad spent a couple of hours with me. Both Lorie and Allen are apart of our Run to the Sun relay team. Lorie is fast!

There is probably a lot more that I have forgotten to write about, however, I will try to write more next week. Here is an update on our run. As of last week, we have 270 runners and we are still open for more. So if you haven't sent in your application, there is still time. We would love to have you! Don't forget the costume!

On September 7th, Natalie will be answering the phone for the MDA Jerry Lewis Telethon from 3:00pm to 5:00pm. Be sure to call her and donate! Natalie will have a picture of me in the front of her phone. Call Natalie!

Hope you all are having a great weekend. Be sure to get out and enjoy our beautiful Hawaiian sunshine.

Goodnight Bella! Goodnight Spike! Goodnight Ruby Rose! Nana loves you!

Aloha, Vi

Pictures from Thurday's Swim Day!

Picnic photo

A couple of Blogs ago we said we were hoping to get a photo of Jan at the MDA picnic participating in the relay race. Well, here it is! We told you it was funny!

Blog 35!!!

Today, Lisa and I spent a lazy day at home doing nothing. It is a rare event that we are home without anything to do. It's been 12 straight days that we have been out and about through out the day. So today was a delight not to do anything. This is going to be a very short blog to remind you that tomorrow, Thursday, is swim day. My swim days are limited so be sure to come and enjoy the ocean with me. See you there!

Don't forget, tomorrow is the deadline for the run. Here again is a run application.


Lita, Eric, Marcus and Grandpa Sagon have been enjoying their stay. I have enjoyed their company and they have been so helpful to have around. They wl be leaving us tomorrow to return back to Hilo. We will miss them! My brother Al and Nancy arrive tomorrow to spend the weekend with me.

So, we will blog again tomorrow after we swim.

Goognight Spike! Goodnight Bella! Goodnight Ruby Rose! Nana loves you!

Goodnight Jan! I am glad you sounded very rested on the phone and I am glad you and Henrik are getting the work done. I love you!

Aloha, Vi

Blog 34!

This is Tuesday. Natalie is on the other end of the telephone line trying to decipher everything I am mumbling about (mumble, mumble, mumble). I'm mumbling and slurring my words together with a nasal pwang caused by ALS. Again, if you can't understand me don't be ashamed to ask me to repeat it and, don't tell me you are getting deaf and can't hear me! I won't mind at all to repeat myself.

Lisa has made me a template for communicating when I am not able to talk using a frame with six sections of letters on both side. One side of the frame faces me and the other faces whoever I am communicating with. The middle of the frame is empty where the person who is communicating with me peers through. That way, they are able to see what section of the frame I am gazing at. To communicate, I then look at the section of the letters that I need on the first gaze (like A, B, C, D or E, F, G, H or I, J, K, L). The second gaze tells you which letter (1, 2, 3, or 4). At first it may seem difficult but once you catch on, we will have a fun time talking. So sharpen up on your spelling.

Renee, Michelle's twin, is here with me today as school is starting and Michelle had school orientation today. Its been a pretty good day and Renee is a fast learner. This is the first day she stayed with me all by herself. School is starting not only for Michelle but for Natalie and Renee. However, they will continue to help me while attending school. I feel very thankful and blessed to have wonderful, energetic caregivers. So thank you, thank you, thank you.

Today, Renee, Daniel, Marcus and I attended Aqua Therapy. As usual it was awesome to get in the water in the morning. However, aqua therapy was hard, hard, hard! Today, I wasn't able to walk backwards. That was the hardest thing to do and Matt, my physical therapist, said that my gluteus maxi mus was very weak and those are the muscles that pushes you up from a sitting position to stand. I have noticed in the last 6 months, a loss of "junk in my trunk" or loss of muscle on my bum. Now, I have to concentrate more on doing exercises for my gluteus maximus to strengthen those muscles.

Ok, it has been set for September 3rd to insert a PEG (Percutaneous Endoscopic Gastrostomy) to help to get enough calories and to keep me safe from choking as my swallowing has weakened considerably. Everyday something slips away from me from this awful disease. I can still eat and drink, but very carefully. I am not excited about having the PEG inserted. Tt only takes approximately 10 minutes to complete this procedure. However, it can become critical as my vital capacity is at 20-something percent and I will have to be put under anesthesia which will depress my breathing even more. So, pray that it all goes well.

I especially want to say Hi to my Hilo friends and many who I haven't seen for 40 years. Harriet, I do remember Lois. And Hi to Steven who sent his business card with a nice note with Jessica. And to all my other friends who have written on my comments, next time, add your email address and I will send you an email.

Jan is doing well in Bali. He and Henrik have gotten everything under control. Jan and Henrik will be having dinner with Glizza and Antoine this evening. I wish I could be there too and will send my love to all of you. Hi especially to Aming and Nugrata and the Villa Teresa staff.


Goodnight Bella! Goodnight Spike! Goodnight Ruby! Nana loves you!

Goodnight Jan! Be safe and happy.

Thanks again to all my friends and don't forget to sign up for the great fun run.

Aloha, Vi

Blog 33!!!!!

It's another weekend. Sighhhh....How life can pass by when you're not conscious of it. However, I'm not trying to do that. I've had a load of company this week and through out the weekend while the Janster is on a business trip to Bali. Half of my family from Hilo picked this weekend to come and hang out with me. I can't believe they are all here staying at my house. They are all learning about ALS firsthand. Jessica has just been promoted to the "A Squad" of caregivers. Since their arrival yesterday, the pots in the kitchen have been clanking with delicious home cooked food and Lita has even busted out the vacuum cleaner and don't forget about Grandpa Sagon who is 103 this October who has been wandering about the house with everyone trying to keep track of him. We have to keep a close eye on Grandpa as he chews tobacco and forgets that he is in doors and spits on my floor! True story. However Grandpa Sagon is the specimen of good health with no medical problems. He walks by himself with no aid and has a passion for reading anything that is placed in front of him. We love Grandpa Sagon "Okie Dokie!" (his favorite saying). My brother Junior and his daughters Jessica and Jennifer will be returning to Hilo on Monday and Eric, Lita and Grandpa will stay with me through Thursday when my brother Al and Nancy from Maui will take over for next weekend until the Janster returns (Jan, I am well taken care of. So, you don't have to worry about me).



Yesterday, I had my Aunty Tala, Wanda and Dirk, Leana, Uncle Leggie and Cindy and Uncle Bo come up and spend some time with me. It was fun talking with them and catching up all that was happening in their lives. Thanks again and come again!

This is the last week to sign up for Vi's Adventure Trek and Run. So be sure to sign up soon by August 20th. If you know of anyone who would like to donate beverages, we're looking for someone to donate for our event.

Goodnight Bella! Goodnight Spike! Goodnight Ruby! Nana loves you!

Goodnight Jan, I love you! Have a nice dinner with Emma, Mikala and Bella!

Aloha, Vi

Blog No. 32

Hallelujah! Natalie and Daniel are back. It seemed like forever that they have been gone. Welcome back Daniel and Natalie! So now, we can get back to business.

A few things have happened since our last blog. Last Thursday we had a great swim day at Kaimana. We must have swam for over an hour and as usual, we chatted up a storm. I think we will only have a couple of swim days before I get a g-tube put in/ This will likely happen in a couple of weeks. Thereafter, I may not be able to go swimming for a few weeks. The doctor had already scheduled this procedure for yesterday, however, I was able to put it off for 2 weeks and I am happy about having it put off. So, we will let you know more about it. As for me, my goal is to eat as many things as I can.

On Saturday, Jan and I attended the MDA summer picnic at Ala Moana Park. There were many new faces who we had not met before. It was fun to see all participate in the games and having fun. Jan even helped out in one of the relays which was hilariously funny as his task in the relay was to pick out 5 gummy worms hidden in a plate of flour, only using his face. It was so out of character for Jan. Hopefully, the MDA will send my a picture that I can post to show you how funny it was.

On Sunday, Jan and I attended brunch at the Outrigger with Farber's flyers running group honoring their coaches. Jan was a coach once, a long, long time ago (and that's how we met). It was nice to see all the women I used to run with and visit with them. It was also nice to visit with the coaches and honor them for their great work. Farber's Flyers has been in Hawaii for the last 30 years. The only person left was Donnie Farber himself.

After the scrumptious brunch, Peggy and Stote hung out with me so Jan could get some time to himself. Peggy and I picked a movie out of the sky and ended up hating it. So anyway, we ended up hating it and found solace in going to Whole Foods which made us happy. While at Kahala Mall, we met several of out tri-friends and old classmates. Everywhere we turned, it seemed like we knew someone. Thank you Peggy and Stote! I had a wonderful day with you guys!

Don't forget that the deadline to register for Vi's Adventure Trek and Run is on August 20th. So please don't forget to sign up! All proceeds will be going to our ALS friends here in Hawaii. If you have any questions, please call the MDA office at 548-0588. Thank you again!

If you are in Kailua on Saturday, the ALS support group will be having a garage sale at Divina's house at 244 Akiohala Street in Kailua from 8:00am to 2:00pm. So come by and buy something!

I guess this is it for today's blog. I am very glad to see Daniel and Natalie home. We have all missed Glizza, however, I think she is doing well in Bali.

Goodnight Spike! Goodnight Bell! Nana loves you!

Goodnight Ruby! Nana loves you!

Aloha everyone, Vi

Blog 31: Tuesday

I'm back to apologize the mess up in the last blog. Natalie is the expert blogger. As for me, I am in need of blogging 101. In the last entry, did you notice that there was no ending? That is because I didn't know how to edit the blog. And just a reminder that Natalie is still on vacation til Saturday and I am blogging using my head mouse one key stroke at a time. Yes, it is time consuming.

Just want to remind you about the second annual Vi's Adventure Trek and Run on Sunday, September 20th at Kualoa Ranch. The run is the most beautiful 4 mile loop you will experience. You can run or take your time to enjoy being outdoors and enjoy your motor neurons. Those are the guys that are dying in my body causing my muscles from walking, running and most movement. If you need to run more than 4 miles, then run a few more loops! All the net proceeds will be donated to the MDA ALS division to provide support to our local families living with this horrible disease. You can find the run application on the HURT website below:

http://hurthawaii.blogs.com/

Thank you for participating in the run which serves a great purpose and will also make me happy.

This is short tonight. Will blog more tomorrow!

Good nite Bella. Good nite Spike. Nana loves you!

Good nite Glizz and good nite Natalie and Daniel.

God bless you all.

Aloha,

Vi

Blog 30: Sunday, Sunday, Sunday!

Hi again! Here we are already Friday afternoon. Jan came home from work late this morning not feeling well which is rare for him. (I had good intentions to blog last week Friday.)

Let’s try to blog again. It’s been at least a week or more since the last entry. Natalie, my main blog helper, and Daniel are on vacation in California and will be returning next Friday. They both deserved this vacation and I hope they are having fun!

Getting back to last Friday, Jan came down with the stomach flu and was bed bound for three days. Just so happened that Malia was helping me that day and ended up taking care of Spike, Jan and me. What a handful we all were! She scurried around the house all day making sure we were all watered, fed and comfortable. We then packed my things for the weekend to go to the North Shore with my sister in law, Nancy who was coming from Maui for the weekend. I had to leave the house to be away from Jan as to not to get the flu which if caught would have been disastrous for me. Don’t worry, Malia made sure that Jan had homemade chicken rice soup, fruit, lots of liquids and all the flu and cold meds out. Jan is now better and back to his usual. Thank you Malia!

Nancy and I spent a quiet weekend at our Mokuleia beach condo watching movies, eating and enjoying watching the ocean and the colorful parachutes as they floated back down to earth at Dillingham Air Field. Malia and Spike came over a few times to swim and hang out. We had a nice girl weekend. Thank you Nancy for coming over to care for me when Jan was down and out!

We’ve had two swim days. As usual it was beautiful and fun. However this past Thursday, we forgot to bring the water belt. We (Kathy, Peggy, Karen, Malia, Spike and Michelle) sat at the beach talking and catching up on each other’s lives while enjoining the ocean, warmth of the sun and happy beach goers.

Congratulations to Punkin, Bill and Kathy Q for completing #3 of the North Shore swim. Congratulations to Peggy and Stote on placing in their age group for the Tinman triathlon and a big one to Roy for completing his first triathlon with little training. I think he is hooked on triathlons!

The last two weeks have been the initiation of our two new caregivers Lisa and Michelle who are the replacement for Glizza. They are both caregivers that give from the heart. I feel totally blessed to have them in my life. We are at the stage of getting to know each other and learning my daily needs. As time goes on things will get better and better. One day a week, Malia and Spike will be here for me. However it would be nice if we had someone to carry and hold Spike.

With summer, comes many friends and visitors to Hawaii. In the last two weeks, we have visited with a few friends. We were reacquainted with Dean and Elaine now living in Oakland after not seeing them for nine years. They now have two children.

We had dinner with Andrew who once worked at Jan’s office. We also met his girlfried Amanda as well. Both Andrew and Amanda live in New York. So nice seeing them and catching up with these young people.

We had an enjoyable dinner with Buzz whom he and wife Nell are dear friends of ours. Nell is on the mainland.

On Saturday morning, my friends from my old school dazes in Hilo like elementary to the 9^th grade stopped over for a visit before returning to Hilo. Randy and Bobbie from Hilo, Harriet who now lives on Oahu and I had a fun morning going over our classmates. This is the first time meeting Harriet since the 9^th grade and that was in the late 60’s! Wow! I don’t fell that old. Harriet is the same today as she was back then….funny. She can really make you laugh! As for Randy, we were reacquainted a few months ago in Hilo with classmates Brian and Les. Randy is also funny. I can’t believe how many of my classmates I have connected since the diagnosis. Thank you Randy, Bobbie and Harriet for taking the time to visit. I totally loved every minute with you!