Recent content by andyvaughn

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    is als painful?

    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...
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    2007 Chrysler Town and Country LX Wheelchair Van

    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...
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    I heard him play again!

    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
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    Very Interesting

    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
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    Caregiver Resentment

    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...
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    What is your experience with your ALSA chapter?

    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...
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    Bill Lost his fight with ALS

    Dee, I am so very sorry for your loss. Andrea
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    I feel so useless, the end seems frighteningly close now

    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...
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    The Bulbar Roller Coaster

    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...
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    Jim is healed

    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...
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    2007 Chrysler Town and Country LX Wheelchair Van

    Hi guys, I am selling our Chrysler Town and Country LX Wheelchair Van. It is a 2007, 19,375 miles, I bought the van in August, the conversion was new at that time, has a 3yr 36K mile warranty on Van and Conversion. Side entry, VMI in floor ramp conversion, kneeling system, magnetic and push...
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    Jim is healed

    It is with a broken heart that I tell you that I lost my soul mate at 624 2/14/09. Jim knew I was afraid of him dying in the dark, (we had joked morbidly about it in better times) he waited for the sun to rise, I stroked his head, describing the sunrise and the birds, and told him it was okay to...
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    Traveling/Anxiety questions

    Jenny, I am so sorry to hear you missed your flight. I hope you do indeed get to take that cruise. Jim and I took that exact cruise in November, aboard the Carnival Pride. The wheelchair accessible rooms are large, the ship very wheelchair friendly. There are only a few areas that you cannot...
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    Pain and ALS

    Sophia, The common thought is that there is no pain with ALS - and that typically seems to be the case. However, current research is starting to understand that is not always true. There is a thread on PLM discussing pain and ALS, many patients have quite severe pain and have some good ideas how...
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    Letter to media regarding IPLEX

    Hi guys! As you may know, Genentech, Tercica/Ipsen and Insmed formally amended the settlement agreement - and Iplex will be allowed to be distributed to PALS on a named patient basis. They notified Team Iplex of their decision Saturday 11/8/08 - and pushed their press release 11/10/08. While...
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