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  1. M

    FTD progression?

    I hadn't even heard of FTD until the past 6 months or so. My PALS was limb onset, and didn't show definite signs of FTD until the past 18 months or so (at least that is what my doctor now says, I noticed it about 10 months ago). It was so hard to distinguish between the behavior of a person...
  2. M

    Seeking advice

    what is BFS? But, I know you are scared. Don't trust the internet and trust the neuro. Take a look at what you are eating, and your anxiety levels and add in distractions. ie/ exercise, work, etc. There are so many diseases and so many reasons for twitching, there is no need for you...
  3. M

    fixing the clogs

    When my pals tube gets clogged there have been a few successful methods before we have to call the doctor. 1) put coke/pepsi in the tube and let it eat away. 2) put vinegar 1/2 way up, then put in a little baking soda, close the valve right away, because it starts to bubble up and out.
  4. M

    Toilet Training

    We have been using a bidet also. The one we got was $500-$600. It is called Bio Bidet. It really has been great. I do understand that it is expensive , but if you have to save to get it, it is worth more than every penny. It was also a fun "party" thing one time. . We had a graduation...
  5. M

    Palliative Care

    Elaine, Thank you so much for the information. I was wondering if keeping someone "comfortable" would keep them in a stupor. I will be sure to ask questions about that. I am sure it was an extremely difficult conversation - I feel honored that you shared it. Mary
  6. M

    Fun with ALS...

    You all made my night. I laughed and thought of all the times that we have laughed throughout many parts of this disease. Of course I can't think of anything super funny right now. I remember at our ALS clinic visits, my PALS always tried to answer the questions exactly opposite on the...
  7. M

    FTD progression?

    Hi Tillie, I see you post at all sorts of different times, I sometimes figure that you never sleep. Then I remember you are a world away from me. I just wanted to say. .. back at you…… I felt so alone, and with no one to turn to, to try to talk out why my loving husband was no longer the...
  8. M

    Do you think people know when the end is near?

    So sorry for the loss of your father. I was drawn to your first post and am sad for you that he suffered and went so fast. You can take peace in that you were there for him at the end, and that you listened and loved. I hope your family heals with each other's support. Mary
  9. M

    My Mom has ALS

    Darlene, Your suffering and grief breaks my heart. You are a very strong loving person and you were where you should have been at the end for your mother. You will have no regrets. I am sorry the disease was so horrible and so fast for you. I hope you have faith that you will one day see...
  10. M

    Palliative Care

    Thank you for all of your replies. We were originally recommended to do a palliative care type thing a few years ago, but it seems like just one more doctor to me. Our neurologist recommended that it was time to do this, so that my PALS comfort could be managed a bit better. I will let you...
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