Hey, I'm sorry to bother you seeing as we've never spoken before but I'm new to the website and was wondering if you or anyone that sees this could tell me how I can post a topic on the forum page? I can't seem to find how to do it!
I've read most of your posts, going back quite a while. I understand your grief and disappointment in the futility of this disease. You have traveled the entire journey, thus far, and dealt with the roller coaster of emotions that go with it.
I saw where you were very bitter, hurting, and i turn, lashing out at the rest. I also saw where you talked to a few very positive people and decided to change your attitude, or at least your negative posts. You even promised, and challenged ottawa girl to follow your future posts.
You did good for quiet a while, but the last two posts were trending back toward your old bitterness. Please don't allow yourself to become a negative force. No one needs that, and I'm pretty sure if you continue on that vein, David will eventually ban you from posting at all.
Hate to see that happen, you have something to offer, if you will just do it.
You know--you have my deepest sympathies on the loss of your wife--but comments such as you made to the new woman, celticgirl, are less than useful--and highly unnecessary. I've tried to remember that you're bitter over the loss of your wife--but seriously, try to show a little compassion to those newly diagnosed.
Range of motion DOES help--anyone with ALS needs to keep their joints mobile and working to prevent unnecessary pain. When you make comments, at least try and have your facts straight.
Again--my sympathies--but please, if you can't show support--refrain from commenting. We have a RANT area--please go there and rant to y0our hearts content---but those that find this site need support--not a reminder that ALS is considered a fatal disease.
Forgot to mention: There is also a former CALS section--perhaps visit there as well. You obviously need someone to talk to--and there are those that will listen.
Hi ya. Here's how you enable... I think. Click on user CP on tool bar. Scroll down to edit options and click. Scroll down to private messaging and you can check the box " enable private messages". Then you should be in business. Looking forward to hearing from you! If it doesn't work...post a visitor message and I will research.
I would really like to get to know you. You are a bright spot on this site. I am doing ok and keeping up with my siblings and grand kids. They are boy and are 16 and 15. A handful for their mother. We need to stay in touch maybe in private. I dig you.
Hello - saw your porch light on. Are you doing OK, considering? Hope you are ever so slowly recovering. I am fine, but the cold weather is irksome and causes more stiffness, but not complaining! Spring like temps. will be here in less than 60 days... But who's counting?
Thanks for your message. I appreciate it, more than you know. I was thinking of you yesterday... I remembered a YouTube interview with Dr. Bedlack, of DUke ALS Clinic. The short stroke is that he sports a tattoo of a swallow on his left hand. He wears it as a tribute to a young ALS patient, and said it is reminder, when examine and treating a patient, to say something hopeful. He said it is crucial to give people hope, even when statistics are stacked against them. BTW, the young patient, to whom he referred can be found by googling " Often awesome". I hope you are slowly building a new life for yourself. You deserve to be happy.
I have been out of touch for a while, but I am distressed to see that you seem determined to distress others. I don't have ALS; I have severe bronchiectasis and my lungs are colonised by a hyper mutating, multiresistant strain of mucoid pseudomonas aeruginosa. I will die of respiratory failure/cor pulmonale unless the bugs kill me first. I have had a lot of time to get used to the idea and I greatly sympathise with those to whom it comes as a sudden blow. Elaine is one of the most wonderful, kind people that I have ever met, and I am baffled as to why you should seek to distress her and others in this way. Please stop; there must be better uses of your time than wanton cruelty.
You are no doubt intelligent and eloquent. Do you truly believe you must remind PALS of what we already know? That we're in for a long excruciating exit? It's like telling an obese person - you're fat. Do you think that news inspires them in any way, or does it force them to sink deeper into loneliness and despair? We come to the site for respite, camaraderie, information and support. YOU of all people could/should be offering helpful hints. Surely you learned something whist caring to your wife? Must you remind me that I shall lose my dignity ? I KNOW THAT! I HAVE NIGHTMARES ABOUT THAT! Why focus on those negatives. We're all going to die- so let's focus on life. Why not pray for us all? It would be kinder and much more helpful than anything you've posted thus far. Why you are fixated on the worse of this worse disease defies logic; suggest you examine your own conscience before "ministering" to the weakest of the weak. Did Jesus pray with the lepers or tell them they reeked?
You started the posting day with promise to the young man- and then, it's like you cannot help yourself- you go for the jugular. Shame on you for doing so, and shame on me for hoping to be your friend and help you in your grief. Please, pray harder for grace and kindness. You'll feel better and actually help people here.
Some of us just aren't ready to accept the truth either about this cruel disease or we live everyday in constant fear and anxiety. I am so afraid of what I will see in a few months or so with my dad. I know my dad is not young at 78 . But, I'm so scared of how he will go. I watched my mom suffer for 5 years with colon cancer before she died with my dad and I at her bedside. No, I don't think your heartless. Just afraid of the day too that I will also experience your pain.
Thank you for making your post to new members a little more positive. They are all scared and overwhelmed by all of this. Hope you have friends or family who are supporting you through this difficult time. Take care, Kim