Recent content by paula-jane

Al, you are looking great and the family is beautiful... Looks like a fun Christmas season for everyone.

My heart breaks for Gails's family... what a warrior she was in her battle. I have my cureals bracelet upstairs and my family overseas have them as well. I have not posted too often since my mum's death in 2008 from ALS... but, Gail's strength and that of her husband, family and Barbie 4's...

Hello Al, Glad to see you are doing ok... I think of you often and wanted to wish a Merry Christmas to you and your family.... HUGS xoxo Paula-Jane

Netty, I'm so sorry to hear of Freddie's passing. My heart goes out to you, may your memories comfort you always. You and Freddie were such a great team. xo paula

Hello to all the wonderful people on this forum ... special hello to you AL... I still wander in and about here... but, do not post that often. I thought I would share a bitterly sweet March 3rd story with you all! On March 3rd, 2009... We marked the first anniversary of the passing of my mum...

Sandy, It's just going to take time and however the holidays unfold... "it will just have to do for now!" That was my mantra during my mum's illness and it has stayed with me since her passing. While trying to cope with her illness and my family, I would just keep that phrase with me and I...

Sandy... Have you ever seen the movie... Family Stone? You should watch it... I think you would love it. Paula.

Jackie, I am so very sorry for your loss... lots of hugs to you... may you always find happiness and warmth in your memories of Horace. Paula.

Fluid buildup can be very difficult to treat... the feeding tube will help if meds are needed to treat it. I wouldn't wait for a fever to show up. I noticed you are in Ontario... In the GTA we have a service called Medi-visit. It's an on-call Doctor service and they come to your home. The...

Hi Ronwv, It's a shame to hear a doctor say something like that. Just curious.. is the doctor an ALS specialist? Most doctors familiar with ALS will explain the drug to you as pros and cons and let the patient with ALS make the decision. I don't think it's respectful for anyone to deny...

Oh... and p.s... give those sleeping pills a little longer to work! They really do help you get back to doing the things you need to do. A good night of sleep really helps you see things better during the days. Try a soak in a hot bath, a magazine or book to read and then into bed and take...

Sandy, I had to clear a 4 storey house that my mum lived in for 40 years and then sell it. It was tough physically and emotionally. If I might suggest that you have a couple of great girlfriends with you to help while you go through your dads stuff. The tears are easier with support and hugs...

Carl, You have had several crisis in your life at such a very tender age. You sound very level headed in spite or despite what you have been through. I'm not sure why you feel guilt and shame... you were a child and coped the only way you knew how. This is a great place to open up and write...

Sandy, It will take time to define your "new normal". You will move forward with the knowledge that you did everything right for your father. You will move on without regrets and that is so important for the healing process. It will be tough to fill the times during the day when you would...

My mum took Rilutek from diagnosis to death (about one year) She tolerated it very well. We were told that we would not "see" a difference and that she would not actually "feel" any"extension" to her life (As ALS only goes in one direction!). Whatever it did.... it helped her to feel that she...