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Teg, My husband had severe pain - he tried neurontin with some degree of success, but also had to use fentanyl patches along with ativan. Many with ALS do not have pain, but when they do, it seems to be very severe. Jim's doctor told us that only about 20% of her patients experienced pain, but...

Hi, Yes, on a conversion van, you can ride the wheelchair right into the van. There are several types of conversions, and varying types of vans - from mini vans to full sized. Ours is a side entry, wheelchair rides in the passenger seating area. Our's is a VMI in floor conversion, meaning the...

I am so very sorry for your loss, your courage, love and dedication have been a source of inspiration to me, and I am certain many others. Thank you for taking such good care of Freddie Andrea

You have to pay for the full abstract, but you can read a more detailed summary here. http://www.jneurosci.org/cgi/content/abstract/28/52/14056 Andrea

I must be missing what/why tempers flared, as it was stated earlier, everyone is "right". In my experience as a CALS, ALS is a very difficult painful and journey to take. I was Jim's full time caregiver, and at times the road indeed was very hard to traverse. I didn't have the luxury of in home...

I am just curious to see what everyone's experience is in getting support from their ALSA chapter. I know for us, while we had a kind and compassionate case worker, there was very limited benefit from the chapter to us on a personal level. I was wondering if everyone might want to tell of their...

Dee, I am so very sorry for your loss. Andrea

Feeling helpless, I mirror the other sentiments stated here. Your father has made his wishes known, however, some people change their minds at the 11th hour. You can always ask a couple of times a day if he would like to consider the vent/bipap. My husband succumbed to ALS 2/14 - he stated from...

Thelma, I don't know if this will help, but it sounds like my Jim and your father are very similar. Jim would NOT consider taking anti depressants for the emotional lability. Yet, he was suffering so badly from it, to the point that he wouldn't go out of the house due to fear he would cry/laugh...

Felicia, While I understand your questions, please know that ALS is different for everyone. We all want a promise of time left, what to expect, how it will be, etc. Jim was a very rapid progressor, and his ALS was very unusually agressive. He went from first symptoms to diagnosis in a month, and...