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  1. L

    Another diagnosis in my family

    so sorry Sara, i am so sorry to hear about your cousin. as you know from my other replys my family also has FALS and the fear can be paralyzing- wondering who will be the next to be diagnosed. your family is in my prayers. Leslie
  2. L

    Have you taken modafinil (Provigil)?

    Provigil My dad takes 100mg of Provigil daily and says that it gives him "physical and mental" energy. He has not experienced any negative side effects. Leslie
  3. L

    50/50 Chance Of Getting Als, Would You Be Tested?

    yes to testing hi sara, my family was diagnosed with Familial ALS last month and we are beginning testing for the SOD-1 gene. If my dad is positive for SOD-1 then I will definitley be tested- the results will either be a huge relief or a new reality. Leslie
  4. L

    Familial ALS

    Well, some scary news yesterday. What my family thought was spontaneous ALS (dad has bulbar'05) has now become FALS with the diagnosis of his 1st cousin. They both go to the same ALS specialist and I talked to him today and he has confirmed the diagnosis. Apparently my dad's preceeding...
    • Leslie
    • Thread
    • als bulbar dad diagnosed diagnosis fals familial familial als family father genetic genetic testing information research testing
    • Replies: 0
    • Forum: General discussion about ALS/MND
  5. L

    what is a feeding tube?

    peg adhesive info rick, the info. on the adhesive: "FLEXI-TRAX" large 4"X 1.5" made by ConvaTec 1-800-422-8811 Use "Protective Barrier Wipes" (before applying the FLEXI-TRAX) made bt ReliaMed 1-800-409-2848 both are covered by insurance, you will need a script from your doctor Also my dad...
  6. L

    what is a feeding tube?

    peg tips Hi Rick, my dad got a peg in April and it has been a great benefit! But there was a little break in period. As for the pain, my dad experirnced pain around the insertion site for about a week. He was pretty uncomfortable but I think he managed with pain meds OK. If the pain is...
  7. L

    Communication

    eye gaze system my dad has bulbar and is losing his speech quite readily now. he has been "fitted" for an eye gaze system, it is a system that allows him to look at a computer screen and the camera scans his eye and he is able to "type" by looking at a keyboard. its is a great system and the...
  8. L

    Going on vacation

    take the trip! Quick story...my dad was diagnosed with Bulbar ALS in June 2005. He had always wanted to take the family on an Alaskan cruise. About three weeks after his diagnosis I asked him if he wanted to take the cruise- he said "yeah, maybe next summer... I can get on the boat in a...
  9. L

    Happy Birthday Al! :)

    Happy Birthday! AL, HAVE A SUPER GREAT DAY! YOU HAVE A BIRHTDAY WISH FROM GEORGIA! Leslie
  10. L

    The ALS Patient Initiative

    Dear Friends, My family has supported the creation of a new ALS resources website, www.ALS-Link.org We hope it will help "newly diagnosed" patients as well as anyone needing resource information. We welcome comments in order to improve the website. Thank you ALL, Leslie
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