Tuesday!!!!

Hi folks! Well, I guess we're getting ready for the Fourth of July BBQ that marks the 70th Anniversary of Lou Gehrig's retirement from baseball after his diagnoses of ALS. Natalie and I have been busy coordinating this event. After calling many parks to find a location to hold this event and play softball, we finally found a park not in the Honolulu area as we would of liked, because they were all taken up by baseball! However, we will be having our BBQ at Kualoa Beach Park which will be beautiful and we'll have plenty of room to play softball! We even talked our local ALS Support Group to help us in hosting this event and we're looking forward to having alot of fun! On another note, we are looking for donations for food and beverages. If you know of anyone who can help us, please let us know.

It is pretty late and Natalie who has been with me all day, has to go home now. We'll blog tomorrow and fill you in on all that is happening this week. Never a dull moment! Thank you for your love and support. Talk to you tomorrow!

Goodnight Spike, goodnight Bella! Nana loves you!

Goodnight Glizza!

Aloha, Vi

Fourth of July BBQ & Softball Game Invitation!

The link for http://www.violetsweb.alscommunity.org/ is to the right, which is labeled "DONATE NOW to ALS TDI to find a cure" . The link takes you to the main Family Sites page. From there, click on Hawaii on the map and you will be directed to the ALS TDI, Violet's Web site where donations cane be made! Thank you!

Blog 17...

Before we go onto the weekend, as I told you on Friday, we had the nursing agency come to our house. They were there at 7:30am to meet Natalie, Daniel, Jan and I and learn my morning routine. So there they were, at 7:30am in my bedroom to learn the routine. It's a good thing that I'm a happy morning person and not Oscar the Grouch in morning. The experience was amusing to have everyone following me into the bathroom and watching me do my morning bathroom activities. Overall, the experience was good as I enjoyed meeting our potential caregivers. We will be having more of the agency's caregivers come to meet and observe my daily routine. We also have others on the list to interview. Our caregiver search has been steady and we have had friends give us other potential recommendations. 

After the working morning with the caregivers, Daniel, Natalie, Karen and I had fun by going to the movies to watch "Land of the Lost" starring Will Ferrel. Will Ferrel is so funny and crazy! Remember, laughter is good medicine. 

So far the weekend is going smooth and mellow. Nancy and Al from Maui, are spending the weekend with us and we are enjoying their company. Al and Nancy have been fantastic and gracious and they always come and visit and take good care of Jan and I. We, Jan and I, always look forward to spending time with them. Thank you again Nancy and Al!!! 

Today, I had my third counseling session. It is important for me to tell you this because as a person with a chronic illness, there are many issues to resolve and to learn how to work through them. Today, I learned about the different ways people communicate and how communication is understood by others. I also learned about acceptance and letting go. Counseling has opened up my understanding and acceptance of this devastating situation and has given me freedom to accept myself and others as they open their hearts. 

Natalie and I have been busy looking for a baseball park to host our Fourth of July BBQ. We will be having a website on ALS TDI (the link is to the right). We will continue to keep you informed on our BBQ. 

Hope you are all having a great weekend. While Janice, who is the coordinator for Share the Care is on vacation, Marian has volunteered to fill her shoes during the time she is away. Hope you are having a great time Janice and thank you Marian!

Goodnight Bella! Goodnight Spike! Nana loves you!

Goodnight Glizza!

Goodnight Malia!

Goodnight Mikala and Emma!

Aloha, Vi

P.S. A Note from Natalie: Hi Web! I know that a lot of people have been asking how to post comments. So here again are some quick instructions how:

1) You'll first have to go to www.google.com
2) at the top right side of the page click "sign in." If you don't have a google account, you'll have to create one. You can use whatever email address you regularly use as your username.
3) After youve created an account, go to violetsweb.blogspot.com and select "follow this blog" on the bottom right side.
4) Now you should be able to post comments.

Vi loves reading all of your comments, so keep them coming! Also, please be sure to make Violets Web your home page so you can you can always stay up to date on what's happening. Thank you!

"Big Red" the new van!

Hello everyone, Here is the long awaited picture of "Big Red", our new van that is able to transport the powerchair around town. We're still getting the hang of it and learning what everything does, so don't park too close if you see us out because we may accidentally take you out with the ramp!

Blog 16: Aloha Thursday!

Glizza has been gone for 2 whole weeks today! Daniel and Natalie have been exceptional caregivers. So exceptional in fact that I have forgotten that it has been 2 weeks since Glizza left and Daniel reminded me today that he and Natalie have been with me for 2 weeks, not 1 like I thought. So, I guess we're having fun!

Today was swim day at Kaimana Beach. Punkin, Bill, Heidi, Natalie, Daniel and I enjoyed the beautiful ocean. We were having fun floating, exercising, and gibbering away. We came up with several reasons why swimming is therapy:

Reason 1: Breathing the fresh air

Reason 2: Being in the ocean

Reason 3: Being outdoors

Reason 4: Being with good company

Reason 5: Exercising to promote range of motion and to increase circulation

Reason 6: This is the only time I am not sitting on my bum

Speaking of buns, booties and bums, Punkin got the privilege of massaging my booty as I am constantly sitting on them and my booty, at times, causing more pain than you could imagine! Heidi is learning how to stand up paddle on Jeannie's old cloud board. Go Heidi! Also, I want to mention that I think the AVAP is really working because I was able to be in the water longer, talk more while in the water and have an easier time breathing.

Tomorrow, the agency's caregiver will be coming up to our house for part of the day to observe Natalie on my morning routine care.

We have volunteered to host a 4th of July BBQ/baseball game to raise money for ALS TDI (Therapy Development Institute - the link is to the right of this blog) and honor Lou Gehrig who has put a name and a face to this disease. ALS TDI has a goal to host a 4th of July BBQ in every state. This 4th of July marks the 70th anniversary of Lou Gehrig's retirement from baseball after being diagnosed with ALS. So, mark your calendars and watch for more info on our blog about this event. It will be a lot of fun and Hawaii will be represented. You can also go to the ALS TDI website for more information as well.

Malia and Spike have gone to California for a couple of weeks and we will miss Spike's cooing. So, we're thinking of you Malia and especially Spike!

My brother Al and sister-in-law Nancy will be coming to visit us this weekend. Al & Nancy have been very close to Jan and I and we have all gone to Bali together the last 4 years, shopping, surfing and eating! We're looking forward to seeing Al & Nancy. Oh, another important thing about Nancy is that she and her brother were diagnosed with breast cancer two summers ago. Nancy just completed and participated in a 39 mile walk in Massachusetts to raise awareness and funds for breast cancer. We love you Nancy (and Al too of course).

Goodnight Spike, Goodnight Bella! Nana loves you!

Good night Glizza!

Goodnight Y'all! I love you!

Aloha, Vi

Blog 15: It's Tuesday!

I can't believe it's already Tuesday and once again we're going to aqua therapy. Just standing in the pool (this is an exercise for me) with Matt, was difficult to do today. I could feel my legs buckling under me. As usual, we included exercises for the arms, legs and hips. Practice, practice, practice....until next week!

I also used my AVAP for 25 minutes today which was easier to use today than yesterday. When looking at the picture of me on my AVAP, don't be frightened as it does not look as bad as you may think. Believe it or not, the mask is soft and comfortable (oh no!!! Natalie just showed me the picture and it does look bad!). Note that I am sitting in my power chair that I use more and more each day. I have even been sleeping in it at night as I find it more comfortable than my bed. The only thing I need is a protective cover or something for my seat to absorb the moisture and keep me cool. It's been weird having Jan sleep on a huge bed and me in my power chair.

Staying on the North Shore has been fun and nice to have a different perspective of living. This is my fourth night here and Jan thinks it is about time I come home. I haven't forgotten about him, in fact we brought him a nice lunch to share with him today. I'll be home on Thursday, and ready to meet the new caregiver from the agency on Friday morning. The new caregiver, will assist and follow along with Natalie on my morning routine of getting up, toileting, grooming and breakfast. Wish us luck! If any of you know of anyone interested in being my caregiver to replace Glizza, let us know or call us.

Congratulations to Stote, who completed the Honu Half Ironman Triathlon under an unusual circumstance. Check this photo out. Stote split his wetsuit and was forced to use duct tape. See, duct tape really works wonders!

Another thing I want to mention is that Lorren Walker set up a Share the Care with her friend on Maui whose daughter is ill. Way to go Lorren to spread Share the Care with others!!!

Thank you Daniel and Natalie for putting up with me all day and all night! And thank you Malia for baking some delicious scones and making us a few dinners.

Goodnight Spike. Goodnight Bella! Nana loves you!

Goodnight Glizza who is having fun in France!

Aloha, Vi

Blog 14: This Weekend!

Summer is here! The weather has been hot, hot, hot and sticky. Just imagine what it is going to be like in a month.

We spent a quiet weekend at the North Shore with various friends and family. It was nice not to have to go anywhere or be on a time schedule, so nice! I watched the Mokuleia Sunset with my friend's mother who was visiting from California, while Jan and Don paddled out for exercise. We then had a delicious dinner together. The following night, we had dinner with our neighbors.

We brought my power wheelchair for Jan to practice driving as I am not able to drive it myself. I put my life in Jan's hands as he swerves and speeds down the pathway. He treats it like his toy remote control car! I think he needs more practice. However, Daniel, Natalie and Glizza are pretty good driving my power chair. Daniel says it is because they were brought up playing video games.

The kids came over to eat and take me swimming in the salt water swimming pool. Natalie, Daniel, Malia, Spike and Jan all had a fun time swimming together. I hope we do this more often as it brings family bonding and more exercise for me. Mikala, Emma and Bella will be coming to visit us in a few weeks and they too will join us swimming! Yay!!!

I started using my BIPAP AVAP today for 15 minutes and will gradually increase the time. Using the AVAP is like having someone automatically fill your lungs with air. For me, it was filling my lung spaces that have not been used due to the loss of the use of my chest muscles. After 15 minutes of being on the AVAP, removing the mask created a feeling of difficulty breathing because I was not able to take in as much air on my own as the AVAP put in. However, after my breathing returned to normal, I felt better.

We are in the planning stages to have a second annual Vi's Adventure Trek and Run to be held September 20th at Kualoa Ranch. We will raise money for ALS research and raise awareness of this disease. So, stay tuned for more information. This race will be as much fun or more than last year.

Daniel, Natalie and I ended the day by watching a beautiful sunset at a secret surf spot in Mokuleia. The evening surf was glassy, as Daniel ripped and shredded for an hour and finally had to come in, not on his own accord but because he was not wearing a leash and his board washed in without him. Natalie and I watched 2 big honus diving in the shore break. It was the perfect end to a perfect day!

Speaking of honu, congratulations to my friends who participated in the Honu Half Ironman Triathlon on the Big Island....Stote, Mati, Ruth, Wendy, John and others.

Goodnight Bella. Goodnight Spike, Nana loves you!

Goodnight Glizza!

Aloha, Vi