Recent content by Leslie

  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
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    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...
  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
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    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
  11. L

    Very scared, ALS Symptoms, need help

    So far from the reading I have done and my father's experience, most ALS patients do not experience the physical pain that you are describing- some do, but the for the majority it may be transient. There are MANY causes for muscle fasiculations. I suggest that if you are feeling that your...
  12. L

    ALS feeding tube

    feeding tube can help Dear Terri, My dad (Dx. June 2005-bulbar) had a PEG tube placed @ 2 months ago. He can still eat and drink but it takes so much time and can be tedious, his swallowing reflex is still okay but can be affected by his sitting position. my dad started losing weight because...
  13. L

    Sad and Scared

    My Dad diagnosed with bulbar, june 2005 Dear Melissa, My dad was diagnosed last June with ALS- he will be 60 on May 22. The first month we all were like zombies, not sure what to do or where to turn. My dad was extremely depressed and anxious- which was obvioulsy normal. After we got with...
  14. L

    Ambrotose and mannatech ?

    I agree with David, Ambrotose is a fraud Dear Sarah, I am brand new to this site but when I saw your question I knew that I had information to share. My dad was diagnosed in June 2005 with the bulbar form of ALS. At that time we would try anything that seemed "harmless" and claimed it could...
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