Old 01-25-2010, 12:22 PM #1 (permalink)
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Default losing speech

HI there, I am new posting to this forum. My 84 year old father was diagnosed with ALS Feb 09. He has lost most of the use of his arms and his legs are weakening very quickly. He requires total assistance with all his personal care. We have a very good medical support team, family support and dad has 24 hour care as he moved into a veterans hospital this past fall. I have been reading the posts for a while and they have given me support and strength. My dad is an amazing man and an amzing father, grandfather. I have many questions and sometimes I just want to rage at this life event, but that doesn't seem serve any purpose. My question is in the last few days, dad has expereinced 2 episodes of not being able to speak. He just couldn't get the words out, or if he was able to make a sound, they sounded like gibberish. This lasted anout 20 mins each time. In your experiences, does this intermittent speech loss continue for a long time or does it quickly move into total loss of speech. Also , while we are always on the alert for swallowing difficulties, does this now mean we are heading in that direction as well( quicker than before he expereinced this speech loss?)
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Old 01-25-2010, 01:44 PM #2 (permalink)
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Default Re: losing speech

sanderson, that sounds like TIA to me [mini strokes] Web's speech loss is not like that. Maybe some of the others will have more information for you. Welcome to the forum and how lucky for you and your Father that you have had all those years together and that he has 24 hour care available!
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Old 01-25-2010, 02:02 PM #3 (permalink)
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Default Re: losing speech

Sanderson ... I'm sorry about your dad, but glad you have all the externals under control.

I agree with Kay Marie ... that is not how speech loss happens with ALS. With ALS, speech becomes slurred and progressively harder to understand. When gibberish comes out, something else is going on. Also, with ALS, it is not intermittent ,,, once it begins, it continues. I'd check with his doctor right away and tell him/her what's happening.
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Old 01-25-2010, 08:48 PM #4 (permalink)
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Default Re: losing speech

I thought it might TIA's as well but there are no other symtoms. His speech has been progressively getting harder to understand, almost like it is a thickening of his speech. He had another episode today, but it didn't last as long.
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Old 01-25-2010, 08:53 PM #5 (permalink)
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Default Re: losing speech

oh I forgot to say thank you for all the support that you guys give. I am new to posting, but not new to reading the posts. They have been very helpful. We, as a family are very fortunate that we have the support for dad that we have and we are very thankful for that. Its , just as you know, extremely diffiuclt to watch someone you love with your entire being ,go down this path
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Old 01-26-2010, 08:36 AM #6 (permalink)
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Default Re: losing speech

Your welcome :] This forum is like family and is truly a lifeline for most of us. It is heart wrenching to be on this journey...and yet, there are moments of such bliss and incredible soul awakenings if you choose to see them. I feel like this journey with my Husband is the condensed version. I hope that today gives you several "ah hah" moments of joy and that your Father will be comfortable. hugs, Kay Marie
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Old 01-26-2010, 10:06 AM #7 (permalink)
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Default Re: losing speech

With TIAs the speech comes back, say in 24 hours. With ALS the progression doesn't regress.
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Old 01-26-2010, 04:14 PM #8 (permalink)
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Default Re: losing speech

Thank you everyone. Dad has been having daily episodes of no speech. he tries to talk but it doesn't come out. He had a carotid ultrasound today as his GP also thought it might be TIA's. No results back yet. Now we are thinking what are our options if the carotids are blocked? Anyone have any experience with blocked carotids and als?
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Old 01-26-2010, 09:17 PM #9 (permalink)
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Default Re: losing speech

sanderson, my Daddy is also 84 and will be 85 in May. He is like he is 60! Lives alone, VERY ACTIVE-still has his own repair shop and mows about 10 acres of grass every other day in the summer because he likes to look at all the mowed grass! lol IF my Dad [being the age that he is] was diagnosed with ALS and paralyzed my personal choice would be to make him as comfortable as possible and not subject him to any surgery. My Husband has ALS. He has been very firm about the NO SURGERY except for the PEG. Is your Dad still able to make his own choices and have you asked him what he wants to have done? I would be surprised if anyone would agree to do any procedure. Let us know what happens. Kay Marie
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Old 01-26-2010, 09:42 PM #10 (permalink)
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Default Re: losing speech

HI Kay Marie , your dad sounds like my dad prior to his diagnosed! he was a very active man, living on his own, very active social life, and a real zest for life. This disease has hit hard. In addition to the continuing decline with ALS, he had a small heart attack this past Nov and had 2 stints inserted.( his choice). He is still very much able to make his own choices and is in control of his health decsions. He does talk to my brother , sister and I and discusses his options and seeks our opinions, but unltimately the decsions will be his. We haven't talked about what he wants yet because we don't know what exactly is the cause. I am looking for possible causes and dealing with the what ifs and maybes. I am not very good at the wait and see approach, I tend to mull over all the possibilities and pros and cons, so that when we have discussions I can have my thoughts straight. makes for long nights some times
Thank you for your replys. I am was feeling kinda alone( though I know its not true) and it has helped to be able to come to this forum and post, so Many Thanks
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Old 01-26-2010, 09:46 PM #11 (permalink)
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Hi, just to clarify, dad has been very clear about his end of life choices, and we have been able to have those discussions, but we also approach them every time something new comes up, like when he had his heart attack and it was discovered there were blocked vessels. dad opted to have the stents inserted, if possible,( if it wasn't possible he chose to not have surgery), which luckily they were able to complete the procedure
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Old 01-27-2010, 06:40 PM #12 (permalink)
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Default Re: losing speech

Just to update, the ultraound indicated that Dad's carotids were not blocked so thats the good news. The not so good news is that he continues to have these episodes where he loses his abilty to speak and when he tries, it comes out garbled. We had a chance to speak with his GP and his physiatrist and they both feel that dad is having TIA's and these episodes are not related to his ALS. He is on the appropiate medication and there is really nothing else that can be done.
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Old 01-27-2010, 07:18 PM #13 (permalink)
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sanderson, sounds like you have made some tough but good decisions. We soul understand this journey and just know that we are all with you. hugs, Kay Marie
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Old 01-27-2010, 07:28 PM #14 (permalink)
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Thanks so much. Today was one of those roller coaster days. I am working very hard to stay focused on the positives and while I know life isn't fair and it sounds childish to even type it, I just want to scream sometimes. It is so incredibly difficult to watch him struggle to speak and then just give up as he can't get the words out. I thought I was prepared mentally for this, but now I am not so sure. I can only imagine his ( and everyone else who is goingthrough this disease) incredible frustration. GRRRR
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Old 01-28-2010, 10:57 PM #15 (permalink)
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Default Re: losing speech

Very sorry about the difficulties your dad is having sanderson. Not fair, it's a double whammy.

It's OK to scream at all this stuff! Very therapeutic at times.
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