Beach Bum

Hope you are having a good evening. Thinking about you....

Dear Beach Bum,

I used to love the beaches when I was 17. From Tahiti and Mexico and the Caribbean. And California. But, I was always a Yukon girl. Loved the -40 below winters. We all come from different perspectives and different lives. Which is what brings us together in ALS. Comes out of nowhere, no cause, no treatment. We just have each other to cling to and support. Death is inevitable but that's the same for all of us. Just a difference in time frame. What is so horrible about this disease is the paralysis of the voluntary muscles. I love my sister. I am trying so hard to get my head around this while I'm treated other people with very serious medical conditions. So different - a patient vs a family member.

No need to miss me! Im just right here.... MUAH. Kiss kiss

My dear new friend,

I wish I could be there with you. We don't know each other at all but I wish I could be there with you. I have read your posts..... you are a remarkable person. I would do anything I could for you and I thank you for writing me when everything is so difficult for you. Perhaps there is nothing beyond death than peace. I hope you have peace. Remember, even me, who hasn't known you for more than a day, will always remember you. You're memory will live for as long as the rest of us live. Please be peaceful and quiet. You have good memories and a good family. They will be with you and love you. Thank you so much for your kind words today - I will always remember you.

Oh My God! You've written back! What do you believe happens after death? Do you believe in assisted suicide. What is your most pleasurable memory. Do you have any memories when you were 5? Did you ever play in snow or beat up a kid? Did you ever love an animal? Were you comfortable being alone? What moment stood out for you as being the most traumatic, the most wonderful? Who do you love?

I love you. I really do love you. You were the only one who came onto my new site. I so wish I could have known you. I will tell my sister about you.

hope you're looking out on the ocean. (I'm looking out on frozen hills - covered with snow - beautiful snow).

Many hugs.

Hi Ken, I see you've visited my page. Do you do this for all newcomers?? Anyway, I don't know how well you are right now and if you can talk to me. I have taken the past two days off work and have scoured as many of the threads on this forum as I can. I feel as if I know you and know so many of the other people in this lovely community. I wrote Helen asking for some information. If you are able and feel like it would you talk to me? I am so new here and I know you've been LIVING with it for many years. If you aren't able, my prayers are for you. I wish I had been able to get to know you.

Hey Ken, I'm sorry that it has come to this, I wish I could do something to make it better for you, just know I care about you, and my heart hurts knowing what you are going through and facing.Big Hugs to you!!!

Hi Ken!!!!!!!!!!!!!!! Looks like they didn't need our help today! How are you feeling? I had my 35th high school reunion last night, and had a pretty good time. I'll try to post a picture once they're on our reunion site's fb page. I'm the one in the scooter!

Take care my friend, love you lots!

Thanks so much. It seems to be speeding up, actually. I have the bulbar onset type, and for almost a year all I noticed was speech issues, soon choking occassionally, and swallowing. Had a gastric tube placed in September and that has slowed me down a lot. Difficult to adjust to some of the side effects like nausea. Breathing has deteriorated as well. Up until early September, I had acupuncture twice weekly, and I believe that helps enormously. My doctor has been in China for 40 days, so I hope I enjoy some improvement when he returns this week.
How are you?

Hey Ken I hope you had a great Thanksgiving my friend! How are you feeling? As always you are in my prayers.

Happy thanksgiving, Ken. i hope you were able to enjoy, as you view the sea billows roll. thoughts and prayers for you.

Hey my friend, hope your day was good!!!!

Hi Ken! Back atcha gorgeous! Happy Thanksgiving to you. We have much to be thankful for.
xoxoxo!
Marta

Why two suction machines? Bruce is stubborn, we got him a nebulizer friday, had to go back and get a mask, he has used it twice so far, he said it chokes him, He has been suppoase to use the Bipap at least eight hours per day, he may use it 30 minutes. Now he does use his cough assist, and suction machine. we had a contractor out to look at our house and bathroom 2 weeks ago, have not heard anything yet. We have stairs going down to the den, and going up to our bedroom, already know the bath will have to be remodeled. Sure wish we had Va. What have you got planned for thanksgiving?

Hey Ken just wanted to stop by and see what you have been up to.. Have you heard from Steven B lately?