Thank you

[DebbieR]

I have visited here on and off for the past year. Finally thought it was time to contribute. My dad was diagnosed Bulbar-onset ALS in July of 2008. I just wanted to thank you all for the care and concern that is shown on this site. It has been encouraging to see the hope, humor and sometimes frustration shown as you each navigate the devasting world of ALS.

It has been a year of many firsts for our family. Dad getting his PEG, BiPap machine, walker, wheelchair - the list goes on and on. We have also had the privilege of meeting the wonderful, caring people from the ALS Society, walking in the Edmonton ALS fundraiser and watching our dad lose so much but still be so quick to smile. It has been a tough year but ...... what can I say except Thank-you!

 

[thelma313]

Wow, Debbie, I could have written your post except my Dad was diagnosed one month after yours and our walk is coming up in September. Other than that it seems we are living parallel lives when it comes to the year of firsts.

I am glad that you have shared your experience. I know how difficult it is to see your heroic Dad lose so much and yet show such love and bravery. Welcome to the forum and please vent here as often as you need too.

Warmest regards to you and your family!

 

[DebbieR]

Thelma, yes it does sound like our stories are very similar. Our dads were only diagnosed a month apart!

Are you planning on taking your dad on the walk in September? We took our dad in June or should I say we went with him. He was very determined to do something positive. We really did have a good time and we raised a surprising (at least it surprised us) amount of money. It was nice and sad at the same time to meet so many people and their families that are dealing with similar issues.

Take care

 

[thelma313]

Yes Debbie, we are taking my dad on the walk. He'll have to be in a wheelchair but he seems ok with that. I am ordering t-shirts for our group to wear. We're called "Team Angelo" because that's his name. The t-shirts are a surprise. I know he'll get a kick out of that. I have already raised over $1500 in less than 2 weeks and I am also surprised at how many people have been so generous.

My dad also started with Bulbar onset and now he can't talk at all. He got a Dynavox a couple of months ago, and although that was the first time he ever so much as turned on a computer, he is now emailing, playing Sudoku, and watching silly videos that his friends send him and sometimes even using it to communicate! I am so proud of him and he has amazed us all with his positive attitude. Still it is so sad, just a few months ago he was walking with a cane and now he is wheelchair-bound. Sometimes I find it so hard to get through a day without crying and at the same time, other days, I stop and think about what I am doing, maybe walking my dog or on a bike ride, or just sitting with my dad and I appreciate those moments in life so much more than I did before.

ALS is a monster disease and it is amazing how it can bring out the good in people who rally together to fight the beast.

Take good care of yourself too, Debbie. You sound like such a great daughter. I am sure you bring your dad so much happiness.

 

[GlenBrittle]

Hey Thelma,

When and where is the walk ? Maybe if I can find a way to get my scooter there, I can participate.

Glen

 

[BarryG]

Hello Debbie! Welcome to the forum but sorry that you need to join us. Like your Dad and Thelma's I have been diagnosed with bulbar onset ALS. I am glad that the ALS Society is looking after your dad, they have helped me. I had fun at the Edmonton June walk and I hope that we can meet at the next one! :-D

Barry

 

[thelma313]

Glen that would be awesome!

Hey Thelma,

When and where is the walk ? Maybe if I can find a way to get my scooter there, I can participate.

Glen

The walk is on September 19th at 10:30am at Parc Maisonneuve. It's on the East side of the island of Montreal... not far from the Olympic Stadium. It would be so great to meet you in person! :razz:

 

[GlenBrittle]

OH GARSH DARN - that is the second day after I get stabbed.

If I am up to it , I will make an effort to be there.

Glen

 

[thelma313]

Oh poo
Well I guess we can wait and see. Darn PEG!

 

[DebbieR]

Thelma

Thank you for the kind words. I sincerely want to be there for Dad and I just hope that I can hang in there for the long haul. I plan on it.

Your t-shirt idea is fabulous. That will be so much fun especially as it's a surprise.8) Maybe we will have to do something similar for the Edmonton walk next year.

My dad can still talk a little bit and if we listen really close and play the guessing game we can usually figure out what he wants to say. I wish he would use his machine to talk or at least use it to give us hints but for whatever the reason, he is resisting using it even though he spends a lot of time on the computer - forwarding e-mails, playing games, etc. I am impressed with your dad for taking on something that was totally foreign to him. That takes courage!

It is so hard to watch ALS take it's toll on the ones we love but by the sounds of things you are doing it with grace and courage.

Take care

 

[DebbieR]

Hi Barry
It's good to talk to you. I have read some of your posts over the last while and have really appreciated your comments.
I am very thankful for the ALS society as they have been instrumental in our preparations for the changes happening to Dad. Do you make the trip into Edmonton for the ALS clinics? That would be a long day. You must be at least three hours from Edmonton?

The Edmontno walk was an eye-opener for me. So many people, so many stories. I always thought ALS was a very rare disease. Sadly it's not nearly as rare as I thought or would like it to be.

Hope to meet you at next years walk.

 

[BarryG]

Hi Debbie, you are right. it is a very long day for us to come into the clinic. Six hours of driving and usually 3-4 hours of sitting in the little room answering questions. I am pooped by th time we get home. We have stayed at the Outpatient Residence but even though it is cheap it is also a pretty spartan place and the beds are like sleeping on a sheet of plywood!

The walk is always a highlight for me to meet other PALS and to realize how well off I am compared to some of the brave people. ALS is a lot more common than most people think and it needs to be more well known. Just today I was talking to an old friend that I hadn't seen in a couple of years and he was shocked to hear me. When we parted he told me that he was going to look ALS up because he had never heard of it. My new job in life, teaching one person at a time!

I hope to meet your dad either at clinic or at next year's walk, we can mumble at each other, our own private language!

 

[thelma313]

Debbie, you're very welcome and thank you for sharing your experience with your sweet dad. My dad is the same with his computer. I am trying to encourage him to use it more for communication too. Baby steps.

I'll send you a group shot of all of us in our t-shirts after the walk!

 

[DebbieR]

Thelma, I'm looking forward to see your group shot. Thank you

 

[DebbieR]

Barry, I can well imagine how tired you much be when you get home from the clinic. I know how tired Dad is and we are only an hour and half away from Edmonton. We will make sure an avoid the outpatient residence.

I am finding that I do spent a lot of time letting people know about ALS but I'm also finding that most times that I talk about it with someone - they know someone or knows someone who knows someone that has or had ALS. I'm surprised at how many people have been touched by ALS.