Recent content by brucker1960

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    Lost my husband on11/29/2021

    My husband Roy passed away at home under hospice care after a botched PEG tube replàcement required emergency surgery. The PEG was placed outside the stomach causing him great pain.He aspirated and developed sepsis. He did not have enough strength to fight off such a trauma. We brought him home...
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    Bulbar onset

    I support getting your voice banking done quickly. We were stalled so long in getting a referral to a neurologist that my hubby had lost his voice by the time of the diagnosis. We didn't know about voice banking and it makes me equally mad and sad at the same time. There is nothing anyone can...
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    New caregiver

    Thank you all for some great ideas. I would like to add some home recipes to his PEG even if he can't taste them. I'll look online to find some higher calorie foods that I can blend myself. I was already pureeing foods for him so I'll see what I can adapt for the tube. I do want him to conserve...
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    New caregiver

    He has 7 cartons of jevity (285 calories)a day with 180 ml of fluid per feeding.Breathing is good. He doesn't use any NIV devices. I may try the dressing issue though. He commented the other day about how much longer it took him to shower and dress. I am calling the dietician tomorrow to find...
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    New caregiver

    Feeling angry today.We were so careful about mask wearing and staying out of places because of Covid. We got vaccinated as soon as we could but what Covid didn't take ALS has. I can't watch people today going on about how happy they are to get back normal with our new normal breathing down our...
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    New caregiver

    I am now a caregiver. My husband has bulbar ALS. I feel like I'm swimming in a pool of grief and it threatens to pull me under. I try not to cry in front of him. Today I stood in the basement and cried when I looked at all the foods on the pantry shelves that he can't eat anymore. It seems silly...
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    Worries about speech problems

    Thank you. It's hard to formulate a response right now. There's just so much on my mind. He has a PEG device which his original Neuro wasn't going to refer him for. She hadn't given us a diagnosis and she had her nurse tell us to do a hospice consult. We had him treated at a different hospital...
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    Worries about speech problems

    My husband has been diagnosed with bulbar ALS so I guess I have to go to the CALS forum now. This is the last thing in the world that we thought would happen. Can someone please advise how I start in the new forum?
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    Worries about speech problems

    A follow up to my previous post. If this is ALS tomorrow can I be in two forums? My husband is a vet and I am his caregiver. I'd like to access both forums becàuse they would be helpful for different reasons. Thank you for à response.
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    Worries about speech problems

    It looks as if I will be joining the ranks of the caregivers on this site. My husband had his swallow test last Tuesday and the SLP has put him on a pureed diet and recommended a PEG sooner rather than later. The EMG is scheduled for tomorrow but I feel like it's just a formality at this point...
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    Worries about speech problems

    Thànk you for responding to me. I am sorry for your loss. It must be difficult to respond to worried people. My husband's only symptoms right now are speech and swallowing issues. I am anxious to see the neurologist and have some definitive answers.His COPD complicates things too. I am choosing...
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    Worries about speech problems

    Can someone familiar with bulbar onset tell me what we should expect to be seeing after 6 months of speech difficulties.
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    Worries about speech problems

    He was treated for vocàl cord bowing. It has helped with the volume in his voice but not the speech. neither his speech therapist or the ENT men5ioned their çoncern 5o hiß PCP. The ENT only said it to him after the surgery and I heard him. It has been upsetting.His appointment isn't until May so...
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    Worries about speech problems

    My husband is 67 years old and was diagnosed with COPD in Oct.2020. Since then he has developed speech problems ànd had vocal cord surgery 3 weeks ago. I understand all of this can be the reason for his speech disorder. My concern is thàt his ENT told him he speech problem may be neurologicàl...
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