Blog 29!

WOW! It's been a long time since we last blogged. A lot has happened in the past few days. Today is Monday and here we are sitting in the living room with Lisa, who is one of the caregivers replacing Glizza, Malia and Spike, and Joyce, who is typing this blog as I speak. As we sit here, Glizza is on a plane flying to Bali. Hope you're having a great flight Glizza and just to let you know we're thinking of you. I know you're reading this blog because you're missing us. The best news is I saw my pulmonologist on Friday and my breathing vital capacity was up to where it was in April. It must have been the use of the AVAP or it could have been that the nurse pinched my mouth shut while doing the pulmonary test.

Last Thursday there was a jellyfish warning. Therefore we had no swim day but met at the beach and walked around the park and ended up at Starbucks. There we (Jeannie, Glizza, Karen, Lorren, Kathy Q, Malia, and Spike) drank coffee, enjoyed the morning, and chatted like we do in the water. This Thursday there will be no jellyfish so we are definitely meeting for swim day. We had a busy weekend. Besides being glued to the TV watching Tour de France we had a string of visitors. I had another counseling session which was helpful and enlightening. Glizza, Roy, and Tyler came up and hung out for awhile. Then my sister-in-law Irene from the Big Island came and visited us for awhile. She even massaged my feet and hands with some special lotion that she brought. Thank you Irene!

Early Sunday morning we met Glizza, Roy, Tyler, Natalie, and Daniel at the Outrigger Canoe Club to go swimming. The morning was beautiful and swimming with all of them was very special. We missed Joyce who did not get up for the event. We then had a great brunch at the Outrigger. And we should do that more often. Then as usual I spent the rest of the day with Daniel and Natalie as Jan took his day off.

Last week we also met with several potential caregivers. I think we have found a few caregivers that will work to fill out Glizza's schedule. However, we will still continue to interview for others. Each day this week we will be having a new caregiver to work with. It will be a challenge and we're going to make it fun. Malia will be here to act as a backup.

Happy Birthday Bella! Today is Isabella's 5th birthday. I wish you were here so Nana can give you a big birthday hug! Happy Birthday!

Good night Bella, good night Spike Nana loves you!

Aloha, Vi

Blog 28: Wednesday

Three more days until Glizza is gone. Glizza has been a wonderful person to spend the time with. In the last 20 months, Glizza and I have shared many experiences. Some experiences you would never believe! We're going to miss Glizza alot!

On Monday, I met with Corey my speech therapist and Bruce, the DynaVox specialist. A DynaVox is an AAC (augumentative and alternative communication) device which will help me communicate when I am no longer able to speak. The DynaVox is the size of my computer and will be fitted on my powerchair. It is both a communication device as well as a computer. I will be able to put my own messages and phrases that I often say into the DynaVox and I will also use my own voice. As you can see, one has to be proactive in getting the needed equipment before the disability sets in. Since I can no longer move my hands to type, I will be using a headmouse to control my computer and DynaVox as I do now with my own computer. So, in approximately 6 to 8 weeks, I will be getting the Dynavox and start to practice.

Yesterday was a typical physical therapy day. Following physical therapy, Glizza and I met up with Malia, Spike, Kathy Q. and Peggy and attended a movie at Kahala Mall. What a nice outting!After the movie I met Jan at the monthly ALS support group meeting, which is held at Queens Medical Center. At the ALS Support Group, families affected by this disease come together to support each other and share their stories on how ALS affects their lives. The support group led by Divina, helps to educate families of the disease and helps families find resources on care. It has been very helpful to us as we journey through this disease process.

We continue to interview and meet new caregivers to replace Glizza. We continue to look for at least 3 caregivers to fill Glizza's place. This has been a difficult and challenging job for me as I will have to teach each one how to care for me. I look forward to the challenge.

The applications for Vi's Adventure Trek and Run are all out. We will also be posting the race application to this site. PJ, our race director, is still looking for volunteers.

Godnight Spike! Goodnight Bella! Nana loves you!

Goodnight Daniel, who is in Bali!

Aloha, Vi

P.S. Tomorrow is swim day so if you want to come we're at Kaimana Beach at 9:30am. Look for the beach wheelchair sitting empty in the sand, we'll be in the water!

Blog 27: Sunday, Sunday, Sunday!

On Saturday, we were invited to go to the sand bar at Kaneohe Bay with some friends. Jan and I woke up at 0 dark 30 to make sure we would be on time to meet our friends at Kaneohe Marine Base. We went to Starbucks to get our keraff filled with coffee and then hurried to Waikiki to pick up Greg ad Trudy, who we invited as our guests. The day started out over cast and breezy. We met our friends Clay and Gail and their family at Kaneohe Marine Base. We loaded our boat and off we went circling the bay and taking the long way out to the sand bar. Everyone swam and some even tried stand up paddling for the first time. I must say, they did pretty good for the first attempt in paddle boarding. We brought my beach wheel chair and I was pushed around on the sand bar. How beautiful! As the day went on, the weather cleared and became a gorgeous day. The Koolaus stood green and majestic as we looked back to land. Gail fixed a wonderful breakfast of keesh, fruit and little pastries which was yummy! The feeling of being on the water and on the sand bar in the middle of the ocean is such an exhilarating feeling. It is also a time to reflect on how beautiful Hawaii is and how lucky we all are. Thank you Gail and Clay for inviting us to something that we love to do and sharing your company. After the long day, Jan and I were both exhausted.

Today, Sunday, we will be taking Glizza and her family to dinner to wish her farewell and to show her how thankful we have been to have her for the last 19 months. This is Glizza's last week with us and her last day will be on Friday. I can't believe how fast time has slipped by. Glizza had shared my journey with ALS in the last 19 months and has seen the progression of the disease firsthand. We have developed a strong bond of friendship and sisterhood. I am really going to miss Glizza, but I know she has to go on with her life. We wish her the very best.

Thanks again for making our Fourth of July BBQ a success. We were able to raise $3,600 for ALS research. Our next project which is the second annual Vi's Adventure Trek and Run is set for September 20th. Applications are now out. PJ, our race director, is still looking for more volunteers. If you are interested, please email me at jonesmeduskyvi@hawaii.rr.com. Remember, we are only taking 280 runners so send your application in ASAP. PJ has planned a great run and fun post activity.

Hope you all had a great weekend! Have a great Monday!

Find something beautiful that makes you smile. Did you notice that when you smile, you take in a deep breathe which is so healthy for you? So smile more!

Goodnight Spike! Goodnight Bella! Nana loves you!

Aloha, Vi

Blog 26: Happy Friday!

Happy Friday! Friday is a day most of us look forward to and which takes us into the weekend.

Earlier this week, Glizza and I drove around town returning the things we borrowed for the picnic. The last few days we have been quietly resting and enjoying the time spent at home. We even took a rest day from aqua therapy, but did not give up on swim day. Malia and Spike have spent a couple of nights at our house. Having a baby around brings happiness and joy. There also appears to be a special energy surrounding those little perfect bodies. Thank you Spike for spending time with Nana.

As usual, swim day was energizing to the body and soul. Ocean water is so invigorating! Punkin, Elaine, Rene, Natalie, Kathy Q, Glizza, Malia, Spike and I had a great time soaking and floating
around in the crystal blue water. Everyone helps to keep me afloat as I exercise my arms and legs. This is the time, we all caught up on what's happening in each others life. We're all chatty Cathy! FUN! Today Spike was the center of attention as he smiled and kicked his legs. We girls all cooed and encouraged him on.

Today I met with my physiatrist for my monthly appointment. I am slightly weaker. The concern is when will I be ready to put the g-tube in. All of my physicians are ready for me to have this procedure done. The one thing that stops me is that I will not be able to go swimming. That makes me sad. On another note, I will be evaluated for head control for my power chair. That means I will be able to drive my power chair myself using my head.

Good luck to Punkin this weekend as she swims the North Shore swim series #2 at Waimea Bay.

Thank you to all. Remember to find something beautiful in your life that makes you smile.

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

God bless you all.

Aloha,
Vi

PS: I wrote this whole blog using my head mouse and one key at a time.

Blog 25: Swim Day..

Since last Thursday, we have been extremely busy putting together our last bits for our fourth of July BBQ for ALS research, which turned out to be a great success. Now we can take a deep sigh of relief and go back to last Thursday's swim day!

On July 2nd, Thursday, our swim day was a hot, hot, hot day and in many ways HOT (Jeannie, you really missed it!)! Punkin and Bill, PJ, Glizza, Heidi, Heidi's Mom, Joyce, and Greg enjoyed the beautiful, cool, and soothing ocean. We all floated around in the current talking, massaging, kicking, and having fun. Believe it or not, I got dunked in the water three times which felt out of this world. Today we met old friends Wade and Celeste, whom I have surfed with for the last 20 years. Then we have new friends, Joyce who was visiting home from college (Glizza's cousin), and Greg who is visiting from Huntington beach. Then we have local new friend, Daniel. We have seen him for the last several weeks frolicking around us while swimming. The girls have truly admired him and his well cut physique...we were envious. Then we met him and he told us his story. He was once over 200 pounds and decided to take care of himself by changing his diet and exercising. His outlook on life was so positive that we could feel his good energy surround us. So we now admire Daniel for making a positive change in his life. We look forward to seeing Daniel again on Thursday.



I forgot to congratulate Punkin, Bill, Kathy Q, Stote, and others for finishing the first North Shore series swim from Sunset beach to Ehukai. This was Punkin's first 1 Mile swim. Congratulations Punkin!

Hope you all had a great 4th or July. We were so tired after the BBQ that we have done nothing. It's now Monday afternoon, Glizza and I have been goofing around and spending a quiet day at home.

Have an awesome week and make sure you smile at something beautiful.

Goodnight Bella! Goodnight Spike! Nana loves you!

ADIOS!

Blog 24: The Fourth of July MLB 4 ALS Barbeque!

Take me out to the ball game, take me out to the park, buy me some peanuts and cracker jacks, I don't care if we never come back 'cause it's root, root, root for the home team ( sing along)....... it's Hot dogs, apple pie and baseball for our 4th of July picnic that was also held through out the U.S. to honor Lou Gehrig and to raise money for ALS research. Mayor Muffi Hannemann officially proclaimed July 4th as ALS Awareness Day. Our picnic was held at Keehi Lagoon Beach Park. The day was beautiful, sunny, and breezy. The tents waved and shimmered in the wind but we payed no attention and continued the day's festivities of food, games, and softball.

Although there were many other 4th of July events happening through out Oahu, we managed to have at least 100 people come to celebrate this event. Every one of our volunteers found their place and made this event successful. The barbie was cooking and smoking with hot dogs and Teri- burgers! Everyone came with an appetite and enjoyed the barbeque and the pot luck dishes that everyone brought and shared.The day opened with Kathy O's introduction with a Hawaiian chant and hula dancer. Jan followed with a talk about Lou Gehrig and then the day continued. Games such as tug of war and water balloon toss were played before the softball game. Most everyone thought they were too out of shape to go about jumping around but once out there, they had no fear and had a blast!! Prizes were given to all winners of the games. Every ten minutes, Natalie announced at least two raffle winners winning such prizes as T-shirts backpacks, shoes, watches, paintings, gift certificates, surfboard and water bottles. Thank you to all of the generous donors.

By the end of the day most of the food was eaten and a lot of juice water and soda quenched the thirst of all. Everyone left the park happy, filled, and with a prize in hand. And I myself watched the whole happy event from my power chair. Living vicariously through those around me with their running and jumping hitting and throwing and pulling the tug-of-war rope. It made me very happy to see all having fun and being more aware of ALS. Thank you to the ALS Support Group for all the hard work put into this late bloomed effort. Thanks to Devina, Nancy, Tammy, Tanya, Maile, Nicole, Lance, Tom and friends, Kathy, Jan, Glizza, Natalie n Nancy S. and Malia. If I missed anyone, know that I appreciate everyones help. Hopefully we will be able to do this again next year with alot more planning and gusto. Happy 4th of July!!!

Good Night Bella, Good Night Spike, Nanna loves you!!

Aloha, Vi