Rest In Peace

Bob passed away October 5, 2007 at his home. May he rest in peace. I miss you babe.
Love your wife.

What you see when I go by . . .

On the left, the Raider Symbol is my favourite NFL team, on the right is Greg Neuwirth's patch from his hockey team. He was a best friend of mine and he passed away in the Spring of 2004. The bottom patch is my FU-ALS motto which stands for Fu!^ You ALS, or Friends United against ALS. And Live 4 Today, which is written above our bed in the ceiling is something we should strive to do each day.

To my best friend,

My best friend from my childhood, Glen Cheetham was just here. I was

overwhelmed by his visit because it seems now if I see someone and they live a long ways away, chances are I might not see them again, and that is very painful. It was a very different feeling, I never really got to express grief, or I've never been able to feel grieve as I did today.

I had a great visit with Glen, brought back lots of childhood memories of us having fun. Thank you for taking care of the web-site for me. And I will never forget you Glen, my guardian angel.

Bob Jr.

Bob's Champ

Listen to Bob's Champ.

Another Tattoo

Well you seen Bob's tattoo. Here is Alexis' tattoo. It is a cornflower on her ankle. Done by Shelley at Five Star Tattoo.

Happy Anniversary Baby

Bob and I celebrated our 4th Wedding Anniversary on the 23rd of August. We had the pleasure of having some of our really good friends join us. Bob planned this for me. He wanted us to go out and have a good time and we did. I know how hard it is for Bob to go out these days, so for him to plan for us to go out for dinner is a really big thing.

When we came home we sat under the stars for awhile. It was a beautiful night.
Thanks Babe!

FU-ALS Tattoo

Here is a picture of Bob's tattoo, day 2. Shelly did a fantastic job. Bob has a reason for picking what he did, later I'll get him to dictate to me and I'll post his description here.

Themed Railing

When we came home today from the tattoo parlor, my dad had installed the new back railing off our carport. This picture is still of an unfinished railing. But check it out, it describes just how we are feeling. Thanks to my dad for doing this, I know he put in a lot of time to make this look so good. People are always doing nice things for us, so thanks dad. Check out his web-site if you get a chance, www.fullcirclelogworks.com.

5 Star Tattoo

Bob had a big day today. He got a tattoo on his forearm. It took 4 hours, but he is used to sitting for long periods, so not too bad. I will post a picture of his tattoo later, but here is a picture of Shelly the tattoo artist with Bob and myself. A big thank-you to Shelly & Alexis for the tattoo. You will have to check out the tattoo, very cool.

Bob's uncle Terry was here a couple of weeks ago with a Live 4 Today & FU-ALS tattoo, which I think started something. Bob had an idea already of what he would want should he get a tattoo and seeing his uncle motivated him to get his. Now I think you may see a few more tattoos in the works!

Long Beach Golf Course Recognition

Thank-you for your support of the ALS Society. This year they raised almost $6000.00. We went for the dinner last week and it was nice to get Bob out for a drive with our friends.

Thanks to Randy, Jenn, Mike, Brad, Christy & Dean for coming with us; Les, Linda & Bob Sr. for meeting us there. It was fun. Beware of the tailgaters!

King Richard Brodeur

This past weekend my friend Les Doiron was gracious enough to bring over some members of the annual Charity Golf Classic in Port Alberni. It was made up of celebrities including Canucks Alumni Hockey players. You'll notice in the picture that's Richard Brodeur beside me. When they left he gave me a hug and a kiss as if I was a longtime friend. It meant a lot to me. Bernie Pascal was also here and I kept on saying to him, I can't believe you are in my living room, I would watch you on TV in my living room and this is quite different now. He laughed at that. There was members of the A Channel, and Les was saying later they may want to do another follow up story on me. I think that would be great, as it generates more awareness for ALS. I also forgot to tell you that while they were here I was able to tell them my story about building the house and 2 On A Roll's, a trip to Toronto and most recently about building the FU-ALS racing truck. From what I was told all of them were quite moved by what they had seen & heard. Thanks very much again Les!

Bob Phillips JR.

Friendship

One of the saddest things for me to watch is to see how much my husband misses his friendships. Don't get me wrong, our friends have been wonderful and have been around. The problem is it wouldn't matter how much they visited, or tried to get Bob out, Bob would still miss them. He misses what he is able to do with them, going out and having fun, boating, camping, driving in the bush, going for drinks, even doing crazy things at times. He misses being able to participate in life with them. He feels now when he sees his friends he doesn't have much to talk about except his ALS, and he hates that. He wishes for his friends to be happy of course, but it makes him exceptionally sad too, that he isn't involved. And even if he wanted to do some of these things, it is hard for him to get out because of this nasty disease.

June 2007 Update

It is hard to believe that it is June already. Summer is here and it seems like it was just the beginning of the year. My husband continues to deteriorate because of his ALS. His right hand which has been pretty much the last body part that was working, now doesn't work very good at all. He manages to use his electric chair, but for the most part it is even hard to use the TV remote. This drives him crazy. One of the things about ALS especially for my formally very active husband is the boredom. You can only watch so much TV. Or he watches my daughter and I play, or he watches people come here and do stuff for us. Or he watches the caregivers do things for him. This drives him crazy too. I think if we could alleviate some of that boredom it would make it a little easier for Bob. We have tried audio books, he wasn't really into it though. What would be really good is some sort of video game that has a head control. He does have OK neck muscles still, they get tired easy and he has the head rest on most of the time.

We have a palliative doctor who is wonderful and comes to see Bob every week. She helps him with pain management and sleeping problems primarily. Plus we have home care nurses come 2 x a week to help with meds or any problems that we may be having. This has been a big help. Also because now that Bob is under the palliative care program we don't have to pay for most of his prescriptions. His prescriptions were costing about $400.00 per month, yikes!!! So now that is one thing we don't have to worry about so much.

One of the positive things in our life, is our daughter Skye. She still manages to make Bob smile and laugh. So that is what I hold on to. To see the two of them together is heartwarming. She is quite comical and she is a great little girl and that definitely is party attributed to who her daddy is.

How Bob is Doing

People always ask me how Bob is doing. This is a great question because it is nice that people are asking about Bob and are concerned about him. I always feel like I don't actually have enough time to fill each person in on how he is doing. So I thought I could write it here.

Bob has good days and bad and we really just try to take it one day at a time. Bob has become exceptionally weak. His hands and his arms which have up until recently been keeping him somewhat independent are virtually useless. The things he really likes to do like playing video games he can't do anymore. Well there is one game he is still able to play on a good day, but he can't play it for very long and the only reason he can still play it a bit is because there isn't much controller movement.

Most people know that Bob's legs haven't worked for a long time now. His speech is somewhat affected. If Bob is tired he is harder to understand. I notice his speech is affected probably more than most people would even realize. Bob has had choking problems for some time. He mostly chokes on his own saliva. I hadn't noticed him doing it too much lately, but the last couple of days he has been choking several times a day. I find that very scary.

Bob is still able to laugh and enjoy things around him. He loves when his friends come to visit. Or watching his daughter play, she is very amusing and keeps us laughing a lot. He likes reading with our daughter Skye. I see him cracking jokes and it makes me happy to see that his humour is still there. Or watching movies together as a family.

My favorite thing is to see Bob and Skye together. When she climbs up on his chair to give him a big hug (because it is hard for him to hug her back now) and she plants a big kiss on him, it makes me smile. She loves him dearly.

I will try to update this as much as I can because I know people want to know:)

An Inconvenient Truth

This is a documentary about Global Warming put out by Al Gore. If you haven't seen it please do. It is quite an eye opener. It brings tears to my eyes to think that we are killing our earth and that we could stop it if we wanted. If you want more information go to www.climatecrisis.net