skipper66

Kim, I appreciate that you took the time to express your concern over my well being. However, you know nothing about with whom I communicate privately on this forum in order to provide daily support to those that need it. You also know nothing about my private life and the activities therein. I have been on this forum for nearly six years and don't plan to leave anytime soon. Until you have actually LIVED with a pALS 24/7, perhaps you would not understand the dedication I feel to those I've come to know and cherish here, nor would you understand that helping those same people (which includes you, by the way) provides me with therapy. So, don't worry about me. Thank you and have a good evening. CJ

I understand you're new and don't know how this works yet. We don't tell anyone how to live their lives unless they ask our opinion about it.

Kim, CJ is doing great. Just as there is no way to truly explain being a primary caregiver to someone with ALS, there is really no way to explain the loss of a spouse to ALS. Being on this site helps us (widows) pull together and support each other. Being on this site helps make sense of all of the hardship we had as primary caregivers for our PALS. It allows us to pass that knowledge on. Like CJ, I am now a single mother with a son at home. I need to vent sometimes - to people that truly understand. I need to give back what was given to me when I first came on this site. This site has helped in my healing. I feel certain it is helping CJ. Missy

We are a sort of family here and CJ is a big part of that family. We do come here for comfort and support. Not to have a relative stranger tell us how they think we should live our lives.

It's probably a good idea to not councel people unless they ask your counsel. You don't know what people are going through.

hi kim,
glad to hear your dad is getting involved in research and trials. tom

I apologize for the delay, but thank you very much!

Welcome. Glad to have you here, but sorry you have to be here

Hello, Glad to meet you. Sunewun

Kim, the pain associated with ALS seems to come mostly from muscle cramping for me and many. It's greatly helped by Baclofen for some, Gabapentin for me. There's also pain involved with the tendons and ligaments as the muscles atrophy and no longer support the joint. Shoulder joint is especially affected. This pain can be greatly reduced with adequate support and positioning (think pillows). It's also advised to get early ROM and stretching to help prevent/reduce pain of this nature and avoid or reduce the need for pain meds and their accompanying side effects. Your Dad will see a PT and OT at each clinic visit and they can give instruction and advice.

I really enjoyed your posting about Prayer Power. Thanks for sharing.
Darryl

Thank you.

Hi Skipper:

My brother's speech is really getting worse and he is depending on me to do everything. I would really like to get some answers and direction as to how to get some things done. I would love for him to join the forum and read some of what others are experiencing- I cannot get through to him. He lives in St. Lucia and there are no organizations or even doctors to assist him. But he can use the internet. Please help!!!

Late in checking my messages. Sorry. I took Rilutek for a month but it made me really drowsy and I didn't want to waste whatever time I have left sleeping all day. Besides it cost $300. a month.

Hope your Dad got some answers on the 12th and that he and you are doing s good as possible. ((HUGS))

Thank you.....