Thanks

[Ronda]

I get 20 views and no responses...I will just research this by myself..All I asked for was a little input and I thought perhaps I might get response!...My mother has been diagnosed with ALS and I am not sure what the future holds...I will figure this out on my OWN....I will be removing myself from this useless group and move on!

 

[liz]

Hang in there

Be patient, Ronda. This isn't a live chat room so it can take some time for other members to see your posts and respond. Many of those views you noticed may have been by guests who don't have posting privileges.

I'm guessing your pretty frazzled right now. Hearing that someone you love has ALS is quite a shock. My husband said he felt like he'd been blind-sided. It will take some time for you to get a handle on this.

 

[Harry77]

Hi Ronda;
Hope you didn't give up yet, after 2 1/2 years of dealing with this illness I've found there is unfortunately no one perfect source for all the answers, not even this one. The folks on this forum are genuine and I have found them very helpfull on several issues my family had been struggling with, but I think a lot of people are like myself and pop on and off the forum as time allows and frequently I read a posting but don't have time to reply.
This is such a frustrating illiness, in that no two people seem to progress the same or within the same time lines, maybe that's why there's no definitive source out there or clear cut answers. One thing I would recommend for someone new to this "club" would be buy the book Amyotrophic Lateral Sclerosis; A Guide for Patients and Families. Amazon has it or possibly your local library. It's a boring read, but great referance resource as you develope questions pertaining to the disease.
The other thing is networking, your local ALS or MS chapter, local support groups, others with neural motor disorders, they're all sources for potential answers. I hope get this thread and if I was one of the people who "read and didn't reply" to your first posting, again I apologize and urge you to give the forum another chance. There's a lot of good information here.
Harry

 

[hopingforcure]

Sorry Rhonda, you must remember we have many a guest viewing the forum. And also that many of us are sick or caring for someone who is sick. I could not type much yesterday, although I did read, I was having a very bad day.. and sometimes that happens around here. We are all volunteers in this boat together. Sharing and learning from one another. Many questions can be answered simply looking through old posts. Hope you stick around..

 

[BarryG]

Ronda, I am sorry about your mom, this disease is so very hard on everyone that it touches.
I am one of the 20 viewers last night but as it was around midnight I didn't have the energy then to reply, especially to such a difficult question. Just as it takes a long time to get a diagnosis of ALS it takes time and effort to learn about it. Even then all you are learning is generalities, each case has it's own individual progression and it's impossible to predict how it will affect each PALS. All any of us can do is keep talking to others to come up with better ways to cope and receive encouragement. I am learning to speak without the use of my own voice and it is a struggle. I also now get most of my nutrition though my PEG tube so that too is a challenge but I'm working with it.

This forum is full of the most wonderful, caring people and I consider myself lucky to know them even if we never actually "meet". I hope that you will stay around and help.

Barry

 

[Zaphoon]

Ronda,

I replied to your original thread. Keep in mind, we have a wealth of experience on this forum you can draw from but many folks type with 1 finger and their response can take a while.

Zaphoon