Recent content by mrvaughan

  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...
  11. M

    Possible Aspiration

    I am sorry that I had not answered sooner, I don't go on the site as much as I would like to. My PALS aspiration is a little more subtle, so it is harder to pick out. He may cough a little, but it doesn't last for long. The hardest thing about watching for aspiration is that the infection...
  12. M

    Alternating air pressure mattress?

    Just an update on the alternating air pressure mattress. About 3 weeks ago, we got the one that Annie's Phil showed a picture of earlier in this post. My PALS has been sleeping great on it. It can get hard, but it has settings to be a little softer and without telling him, I move it around...
  13. M

    Sleepy all the time

    When my husband sleeps more during the day, I know that it is time to look at his ventilator settings. His is invasive, so it may be a little different, but the CO2 buildup is pretty common. Other than sleeping though, co2 buildup also has a lot of disorientation when they are awake, if it is...
  14. M

    First time talking to others

    I think the hardest part for me has been all the emotional ups and downs. He will go through some good periods where it just seems like we are in sync. I see it as adjusting to where we are right now. Then something happens, where his health takes turn for the worse, i.e., he had a lung...
  15. M

    FTD progression?

    ps I wish my husband would use a picture board. I made one, but he does not want to use it yet.
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