Recent content by Vincent

  1. Vincent

    extreme air hunger

    Morphine is a respiratory supressant. Having said that there is a paradoxical effect of in small doses it actually relaxes you so it is easier to breathe<1mg. It is possible to develop a tolerance= meaning you won't be as messed up as time goes on. So I would definitely go with regular doses...
  2. Vincent

    Easy to press call system

    If he has a speech generating device, a baby monitor is all you need. If you don't, windows 10 has an indwelling eye gaze app built right in. All you need to activate the app is a Tobii eyetracker 4c camera ($150 USD). The program has a text to speech app that you can use to call someone on the...
  3. Vincent

    Calf muscle very tight

    Medical marijuana. I started using this for cramping/spasticity 3 years ago and have not taken baclofen or flexeril since. Vincent
  4. Vincent

    Eczema and ALS

    Go to the Body Shop and buy hemp body cream. It has a strong hemp oil smell, but nothing beats it for eczema. Vincent
  5. Vincent

    PALS ROLL CALL NEW THREAD (PALS ONLY) Wednesday if possible or whenever

    It was soooo cold here till well into June. As someone who lived in DC until I was 13, bring on the heat! Vincent
  6. Vincent

    A question

    Allow me to explain. In ALS the motor neurons die one motor unit at a time. A motor unit is the nerve and the portion of the muscle that that nerve controls. Before you would notice weakness you have to have lost about 70% of the nerves to that muscle. This means that at the same time other...
  7. Vincent

    43 yo female, hands & forearms weakness and ache for several months

    If i might weigh in, it sounds way more like carpal tunnel syndrome. Pain in hands and forearms plus cramping sounds like a pinched ulnar nerve. Through working with your hands repetitively, it tends to wear on the sheath that your flexor tendons and ulnar nerve run through. It doesn't sound...
  8. Vincent

    Acthar trial terminated

    This is why I think Right To Try is a bad idea. Another drug with no benefit but possibly fatal side effects. Vincent
  9. Vincent

    Please help

    Familial ALS doesn't skip generations. If you had ALS in your family, you would have lots of people in your family who died of this beast. This is terrific news! So that puts you in the normal side of things, you have as much chance of developing ALS as the person sitting beside you on the bus...
  10. Vincent

    Update 6.5 Months into Twitching

    Just to put your mind at ease, 70% of healthy people twitch at some level. Being the majority, that means twitching is part of a normal life. The place you find yourself in is much like the nasty yellow letter in your kid's backpack saying someone in your child's class has HEAD LICE. The first...
  11. Vincent

    New member looking for support

    Hi and welcome to the worst club on the planet. As a first thing, give thanks that you live in Canada. A lot of the expenses people incur with ALS are covered by your provincial health plan. Get in touch with ALS Saskatchewan. They have a wealth of information and some equipment can come from...
  12. Vincent

    Questions on fasiculations and Bipap from ChristineRK

    The Bipap was prescribed by the respirologist at the ALS clinic I go to. I only had to do a pulmonary function test and based on a score (FVC) below 50% it was deemed necessary. Sleep studies tend to look more for sleep apnea or low 02 sats. Vincent
  13. Vincent

    Input Request: I've lost so much, please don't take my beer!

    With a g-tube there is no reason you need to stop beer. A friend used a 40ml syringe and it took an hour but he still had a beer on his deck. Or if you are just looking for a buzz, straight in the tube works too, a 60ml syringe is about a shot glass of beer. As far as alcohol and cramping, I...
  14. Vincent

    Pain what really helps.

    There are probably 2 things going on here. Your PCP doesn't know ALS very well and the fact most of the medicines used to control pain are respiratory suppressants. This is especially true of opioids. This is why lots of PALS use cannabis. A good medical grade with a balance of THC/CBD of one to...
  15. Vincent

    brace to hold foot at a right angle?

    Go to your local orthotist and have something made for you. A simple solution might even be using a foot board on your bed. If you only need it at night an AFO might be more than you need. The advantage of an AFO is it can be used for walking as well. If you go the AFO route you will need soccer...