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  1. chally

    Update on Hospice

    Finally got the BS cleared away and now officially in hospice care, morphine, Ativan and all what comes next Got good nurses coming in, got good aides night and day to give Beth much much needed rest. Can’t type my own texts so alot less frequent correspondence , sorry! Things have sped up...
  2. T

    "Important information" template?

    Hi all, I was wondering if anyone has a document/binder to share where all the important information one should know about one's pALS is in one place (contact info for doctors, nurses, etc.; medication list; etc.) I know we should probably have compiled such a thing already given that my...
  3. W

    My dad is still kicking, but recently got the flu.

    Hello, Sorry I've been away from the forum for a long time. Two teenagers, one baby, and full time care of my dad (shared with my mom) was tough.. And then... We decided to move from the USA to Finland. It was my husband's idea actually... He dragged us in June 2018 because he thought we could...
  4. Chincoteaguer

    Back home from hospital

    I apologize for the length of this post but I hope it might help others who have to take their PALS to the ER. We were in the hospital from Thursday morning until noon on Saturday. As I have posted previously the trip to the ER was recommended by our health care nurse based on a false oxygen...
  5. S

    PEG tube question for women

    Hi, I was diagnosed with Bulbar Onset about 7 months ago. I am still able to eat some things, but they recommended that I get the PEG now, while I’m still fairly fit. My problem is that they situated under my breast, which is large. When I sit, my breast covers it, and it gets irritated. I...
  6. T

    Diagnosis At Last

    Hello everyone. My husband of 30 years was diagnosed 3rd October 2018 of Bulbar Onset/ALS. It was a relief for us all to have a diagnosis as we was wondering all sorts what was wrong with him. He started to talk slowler than usual in January this year, and gradually got worse over the months...
  7. Scotiaspirit

    Radicava Side effects

    I been on Edaravone (Radicava) since March of this year. I been experiencing brief periods of blurred vision (both eyes at the same time) during my weeks on treatment, but do not seem to have them during my rest periods. My nurses and doc has noted it, but are unsure if it is a related side...
  8. L

    VA coverage for 24 hour care?

    Hi, everyone. This is such a wonderful community you all have built. I have learned so much already and am so grateful for this resource. My friend has very recently been diagnosed with ALS, bulbar onset. Diagnosis was only about 3 weeks ago, but things have been progressing rapidly as his...
  9. B

    Angela- Billard's wife

    Good evening all, Thank you all for the words of encouragement and comfort. Sunday morning at 230 am my Sweet Angela gained her wings. It was very hard letting her go but very comforting knowing she is now disease free and rejoicing in Heaven. I asked her 2 weeks ago to give me a sign that she...
  10. blitzc

    Recent Diagnosis

    Hello Everyone! My name is Cathy and am new here and trying posting for only the second time. Not so certain about how the rules and regulations work and feeling a bit apprehensive. What do I say to all of you? I am 53 years old and live in Ohio with my husband. We recently became empty...

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