Recent content by 3Grandboys

  1. 3

    bipap & feeding tube advice for ALS-FTD

    Hi all! It's been awhile since I've posted. My husband was diagnosed with ALS-FTD in October 2014. He is definitely weaker in body and mind, week by week! He presented bulbar ALS and personality changes FTD, before a thousand other symptoms kicked in. He just started using a walker when we go...
  2. 3

    Advice please

    Hello ALS-FTD Caregivers: This seems to be the only thread for us caregivers for ALS-FTD. Somehow my favorite one is now closed. anyhow, my husband is going to have serious dental surgery at the end of this week. Any advice to any of your loved ones with ALS-FTD going through dental surgery? The...
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    FTD With ALS Advice

    hi everybody! I sure have been grieving each day. I watch my husband (ALS-FTD) struggle each day with the simplest chores. For example, he tries to open the lid on the trash can, struggles for several minutes until I intervene. This was a man who could fix anything, build anything, do anything...
  4. 3

    FTD With ALS Advice

    The epitome of my life with a husband with FTD was last evening at dinner. I seriously choked on some food and coughed like mad, while he did not even look up and continued to eat his soup and never asked how I am or hold my hand or anything kind……...
  5. 3

    FTD With ALS Advice

    dear all, I am finding a dilemma as a caregiver for my husband with ALS-FTD. I am trying to enjoy the moments of today, because as of today we are ok and managing, but the doctors keep telling me to prepare for the near future because his is a fairly rapid progression. I am to prepare for...
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    FTD With ALS Advice

    THANK you Keri and everyone else. We are now a month into the diagnosis of FTD-ALS. My husband cries about dying and it breaks my heart. I am so less angry with the personality changes and how he completely messed up whatever chores or repairs he tried to do in the past year. The diagnosis...
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    FTD With ALS Advice

    Any advice on traveling on an airplane with my husband who has FTD-ALS? first trip in a long time. He wants the relatives to see him 'for the last time.' (In his words). so sad. I keep reading how routine is best and this trip back east will be filled with activity, people, noise, new...
  8. 3

    FTD With ALS Advice

    THANK you all. You are a light in the darkness of this dual disease! I am reading (rather than sleeping) What if it's not alzheimers? A caregiver's guide to dementia, 3rd edition from oct 7, 2014 on amazon which is 'the only comprehensive guide dealing with FTD." There is LOTS in here about...
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    FTD With ALS Advice

    Things driving me crazy: so much to organize - financial, medical, home repairs, appointments, my work stuff, my own medical stuff, etc etc. how in the world did you all manage everything? I cannot count on him at all; the FTD and ALS impacts every facet of our life together! More thing driving...
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    FTD With ALS Advice

    On Wednesday the EMG confirmed ALS. My husband's neurologist told him of what he is suffering and a little about it (my husband thought he had ebola). The doc also told him no more driving. It's been tough going since then and we are both so sad and grieving. Cereus, did kim ever contact you...
  11. 3

    FTD With ALS Advice

    Hi all! I am thinking of all of you as my life line! There is some incident with the FTD or the ALS or both every day. I write them down which helps me cope. I am doing better with patience and just agree with everything he says (he is weaving stories about neighbors of which he could not...
  12. 3

    FTD With ALS Advice

    Cereus, thank you so much! I spoke with kim on thursday and asked her to give you my number as she mentioned that she knew a kind woman in tucson whose husband died from ALS-FTD. She only knows of 3 with this combination. I would greatly appreciate meeting or talking with you you and listen to...
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    FTD With ALS Advice

    Thanks Tillie. your advice means so much since you went through this horrible diagnosis combination! And so kind of you to pass on your wisdom to others!
  14. 3

    FTD With ALS Advice

    Thank you Tillie! So far I react emotionally to the cognitive and personality issues that happen everyday. I react internally with overwhelming sadness. Externally usually I can hold it together and be very patient and then unfortunately I will lose my patience.
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    FTD With ALS Advice

    THANK you both! My husband was diagnosed only 2 weeks ago today with ALS-FTD or FTD-ALS (don't know the proper order) and it is so good to read two people who know what I see in my husband! I am overwhelmed in every way possible and everyday there is always something to deal with his cognitive...
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