Worries about speech problems

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brucker1960

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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 but didn't bother to mention it to his PCP. Of course I worried and did the most ridiculous thing by looking up info on the computer and scaring myself. We asked for a referral to a neurologist which surprised his doctor but she told us to keep the appointment in case there is nerve damage to his throat. The speech difficulty has been going on for almost five months but there is no muscle involvement or weakness. He has no trouble chewing but swallowing can be difficult at times. Please tell me I'm overreacting but doing the right thing in keeping the appointment just to be sure.Thank you all in advance for taking the time to read this. I promise to take your advice to heart.
 

lgelb

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I'm sorry to hear about your husband. What exactly did the vocal cord surgery entail? If the ENT thinks he has a neurological issue, it can't be overreacting to see a neurologist.

Best,
Laurie
 

brucker1960

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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 I think I'll tàlk to his doctor ànd schedule a few preliminary tests that she càn do.
 

brucker1960

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

affected

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Progression varies - see if you can bring the appointment forward, or wait until May as that is only a few weeks away. (my husband was gone within 11 months with bulbar onset, others are around several years later)
 

brucker1960

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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 to see the glass as half full and take each day as a gift. We celebrate our 44th anniversary next week. Thank you again for sharing your time.
 

Ernie

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You are wise to consult with a neuro muscular specialist. My PALS began with swallowing issues (choking on food) followed by speech slurring. We started with a GP who referred to an ENT, then to Neurological PA, then a Board Certified Neurologist then a neuromuscular specialist neurologist. We lost almost a year to diagnostic time that could have been better used to manage symptoms and prepare for the future. It takes a specialist to eliminate all of the many ALS mimics.
 

brucker1960

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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. He has pretty much lost his speech and I'm bitter that he had such terrible care in January that they cost us precious time that we could have been using to use a voice banking service for the computer program we found for him. We only found out after the ENT who performed his vocal cord surgery that he didn't really think that was causing the speech problem but he still was not brave enough to do anything more than throw the word "neurologicàl" into the mix. He never referred us to anyone nor did he think of mentioning it to my husband's PCP. We asked for the referral ourselves. My faith in medical care has been sorely tested in the last few months. We finally have a good team through a different hospital system now but it's come at a high cost. Fortunately my husband is still ambulatory and I'm trying to stay positive. Some days are much harder than others to do that.
 

brucker1960

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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.
 

Nikki J

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If he is diagnosed you may post in the other subforums. The only exception is that we ask the PALS subforum be reserved for PALS and the CALS for CALS. If the thread does not say in the title or op PALS ( or CALS) only answering in the opposite subforum can be ok although it should be done after great thought as these two subforums are meant to be safe places for the designated groups.

I hope that you do not have to join the main forum. Good luck tomorrow and please let us know. I will be thinking of you
 

brucker1960

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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?
 

Bestfriends14

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Hi Brucker,

I was so hoping your husband would not be diagnosed, but with the symptoms you mentioned, it had me worried for him. I'm so very sorry.

With the exception of the PALS subforum, just start a topic in any subforum of your interest, just like you did for this one. There's nothing special you need to do.

The next while is going to have you feeling so many emotions with many rollercoaster ups and downs. As someone mentioned to me upon my husband's diagnosis, it's not all happening today, so just take everything one day at a time. Please ask any question that's on your mind. The folks here are kind and informative.

Hugs to you ❤
 

brucker1960

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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 and a different neurologist.
 

affected

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I'm so sorry, my husband as you know was also bulbar onset.
Please go to your profile and change the reason for being here to CALS (Carer for a person with ALS)
When you are ready, just start a thread in the CALS section. No pressure, but over there you can talk openly with us CALS and past CALS and I promise we will totally relate. Lastly, you are in shock now, please treat yourself gently, this is huge, it is not trivial and your many feelings that are trying to overwhelm you are a valid response.
 

rmt

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I'm so sorry.

You mentioned your husband is a vet. ALS is considered 100% service connected and the benefits from the VA are fantastic. Plus he can get disability payments. We worked with the Oregon PVA (paralyzed veterans association) and they helped with all the paperwork. You can contact your local chapter to help get you started. It is definitely worth doing. If you have any questions, just ask here. The people here are amazing.
 
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