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

People Helping People

One thing that has happened since Bob was diagnosed with ALS, is that our family, friends, businesses and the community have rallied around us to help us. From back in February 2005 when the big Valentine's Fundraising Dance was held to the construction of our new wheelchair accessible home, to everyone for their support with the On A Roll, to more recently having been given donations to help with the cost of a new adjustable bed for Bob. It is truly amazing at all the help we have been given. We can thank everyone but that still sometimes seems not quite enough. I know people say they are just happy they can help.

So I am going to try to recognize everyone here and I will probably have to update this quite a bit as we are continually being blessed with everyone's generosity.

Recently we had to purchase a new bed for Bob. The bed cost a few thousand dollars, so I was working quite a bit extra in order to buy this bed. Our friends Colleen & Ted found out and at the same time won some money. They came over and gave us a cheque. When Colleen's boss, Gord from Floors First found out about this, he too wrote us a cheque. Also our friends Niki & Ian held a raffle for us which raised 1200.00. Now we didn't have to worry how the bed was going to be paid for. Bob and I are so grateful to everyone, thank-you!

OK I'm Addicted

Thought I would add another post on this snowy day. Our friends Glen & Francee just left after a very nice visit; and after teaching us how to blog. Now I think that I am addicted!

We built a snowman with the little snow we had gotten overnight, and now we are getting some really heavy snow so here it is.