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