tmackenzie

Sorry, to hear about your mom's diagnosis. I have felt your same emotions. My dad is in Dallas instead of at his home here in Illinois because they have a ALS clinic and we don't. He is staying with my sister. The longest in my life I had ever went without seeing him was 10 days. It's quite an adjustment for my whole family. He even drove my kids to school. Please know you are in my prayers. Kim

Hello everyone. Well, we went to Ann Arbor this past week for mom's 2nd opin. They confirmed the news we knew. Since I left her Sat morning I've felt alone, sad, helpless. I just want to be with her to make her smile and make memories. Our trip very memorable for her. We stopped along the way and did some sightseeing. She said it was her best trip ever. I worry when I am not with her. My family (husband/children) are leaving for a vacation this week. I will call her often, but it's still hard not being near her. Atleast when we are together we do laugh & smile. She is now required to use a walker as it's in her right leg. We are getting her a BiPap machine to use at night to help with her breathing. She is still eating via her mouth, but gets water in her feeding tube so she gets her hydration. As long as she can keep her weight stable, that is our biggest concern right now. Thank you for thinking of her. I am getting her internet no matter what it takes, wish me luck!

Wishing the best for you, your Mom, and your family

Hello Tina.. How goes it? How's Chris?

HiTina - Glad she liked it. Hope the nausea resolves. How's it going for her internet connection.We could be helpful to her on the forum if she could join us. I know it helped me. Keep in touch kiddo.

thank you for your message. I will be honoured to send your mum a card or letter soon. Lots of love x

Hello! I hope things are going well and your Mom did agree to the feeding tube? Have a nice weekend. Take care!

Wow - that's quite the week - Thankfully, we Canadians don't have issues regarding primary care (but we have separate insurance for dental/vision/pharma etc). Sounds like a nightmare. Strange about the notes - is it possible the Dr. asked your Mom if there is a family history and maybe she thought of a long lost relative? Don't lose hope - it's a good thing - and helps to get us through. I imagine you think your Mom is pretty awesome - remember - you are an awesome daughter too. Any luck with the internet service for her? Oh - I mailed a little note this week. Hope it makes her feel supported from afar. Take care and have a nice weekend.

Hey Tina - How are ya doin' kiddo?

I am glad your Mom is coming to your house to visit, that is a wonderful picture of you guys. Mother daughter relationships are an awesome thing! I know what you mean about being in a 'fog', there are so many emotions you will go through. I wish you much strength to be there for your Mom. It seems she did a great job at raising you to be a loving and caring person. Take care.

Hi Tina, I am glad you found this forum, it is great. I know how hard this is, I was with my Mom when they gave her the diagnosis. It took all I had not to break down with big sobs in the docs office, I was also 6 months pregnant at the time. I have 3 boys, 8, 5, and 4 months. It was difficult to explain in terms they can understand, but as close as they are to her, I had to. Because they started asking about her speech and why can't they understand her, etc... She is an entirely different person. You will find a way to explain it to them, just enough to get them by, not to scare them. I always ask if they want to talk about her, to talk to me or whomever they feel comfortable with. I do hope your Mom decides to move forward with the feeding tube (PEG), I strongly believe my Mom would be far worse had she not got one. She had it placed in February, just 2 months after diagnosis. It will be great if she can have internet where she lives, I hope you get it. God bless you all.

I just talked to my mom - I told her that she willbe getting cards or letters from you all... she is so touched, she was crying... I cannot begin to thank those of you who will write to her... God bless you all.

You just did. Just click on my name and send me a message. It's kind of hard to figure out. I am pretty new to the forum as well.

No problem. Take a deep breath Tina. It is a scary time - frankly the first month following my diagnosis is a blur - my family and I were feeling every emotion imaginable and some we've never felt before. One day my dad said to me "take it one day at the time"- and I try to heed his sage advice - and it really helps. There will be many highs and lows - so if you need to seek counseling - do it! The ALS Society is a great place to start for good information. You and your Mom are vulnerable - so seek advice from the right sources. You don't sound crazy - just human.

I am getting the hang of it a little bit. I just posted a picture of me and mom on our way to see the Judds It was so much fun. We grew up listening to them while cleaning the house. She says it was one of her most favorite nights! I must agree. I have posted her address in here "my profile" maybe I better see about deleting it...