Old 07-15-2011, 03:10 AM #1 (permalink)
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Question PLS and speech

Hi

Just wondered how many in here with PLS suffer with their speech. I was diagnosed in 2000 with stiffness in my leg and weakness in my hands and falls, in 2003 my speech got bad, to the point that I mostly use pen and paper except on days when my speech is clearer, family understand me, but it can be very frustrating, because of so many broken bones from falls, I use a walking frame both inside and out, I have got a motorised wheelchair which I refuse to use, am very stubborn and use alternative therapy as well as a chiropractor, which all helps. Just wondered how I am progressing as don't know anyone here who has PLS, lots who have ALS.

Tanyss
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Old 07-15-2011, 05:02 AM #2 (permalink)
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Default Re: PLS and speech

hi mystix,welcome to the forum.
honestly,your progression is a tiny bit fast.........with regards to loosing your speech so quickly.

i began with balance and leg symptoms in 1999,bulbar symptoms in around 2006,just got mobility scooter a few months back (though i have needed it for sometime)
my speech is very very slowly being effected more but i am understandable.

we have a member alyoop who is in newzealand,she is in the process of being diagnosed with pls and her husband is a neurologist........she is i think over here in england visiting relatives at the moment but she will say hi when she can.

take care,caroline
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Old 07-18-2011, 03:24 AM #3 (permalink)
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Default Re: PLS and speech

Thanks Caroline

I have had a diagnosis of ALS from one neurologist, but uncertain, wondered with my speech going so fast. Hoped for PLS as one neurologist said. Not giving in though, lasted this far.

Take care
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Old 07-18-2011, 10:25 AM #4 (permalink)
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Default Re: PLS and speech

I can still say the "la, la, la,...laba, laba sounds. But it is when I am very tired that I have to concentrate to form some words correctly; or the pitch of my voice drops.

It is scary when this happens, but so far I blame it on fatigue.
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Old 07-18-2011, 11:41 AM #5 (permalink)
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Default Re: PLS and speech

mystix, i have a close friend who until recently was the neurological support nurse in the Waikato. She told me of 1 other person locally with PLS. A farmer I think. He has speech difficulties and swallowing problems (has a PEG) after 6 years, so it is possible to get early pseudo bulbar/bulbar problems with PLS. If you had ALS, then your progress would be extremely slow for that diagnosis and you would surely know if you had LMN issues on EMG or clinical examination?

ost Neurologists would never see a case of PLS with our small population, so confusion is common. In fact confusion with PLS seems to be everywhere. I am still doubtful, that I have it, but its the only thing thatr ticks the boxes at the moment and is progressing, but very slowly
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Old 07-18-2011, 12:20 PM #6 (permalink)
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Default Re: PLS and speech

I've had intermittent problems with my voice getting raspy but this could be due to spastic muscle activity in my throat. Like Aly, I doubt PLS is a correct diagnosis for me.
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Old 07-19-2011, 02:14 PM #7 (permalink)
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Default Re: PLS and speech

The only thing I can add, which has pretty much been said already is that I my offical diagnosis was ALS back in 2008 ( but as years pass they are counting on PLS). Anyway it started in my lower body, but I do notice speech problems (and my wife really notices it). Late in the day I can tell that I am forcing some words out, and they might not be clear and as I'm saying something I can tell that it is forced & might not sound right. Also, my phone speech is very poor, most people think they woke me up. In addition to speech I go for my second swallow test on thursday, my first they noticed food getting caught on the side near the back and needing to swallow twice. I don't think it is a major problem, I am still able to eat everything, I'm just slower.

But as far as the speech, I also have noticed something going on (as have others), maybe it's just part of it?

I just find it amazing how PLS is supposed to be so rare and yet it seems as though they might use it as a stepping stone to a diagnosis of ALS. I am starting to think they are one in the same, just different progression.........Sorry for my venting.
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Old 07-19-2011, 02:29 PM #8 (permalink)
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Default Re: PLS and speech

you know kevin i was going to post for advice about the same swallowing issue.
i have noticed for a while that food gets stuck in my throat,sometimes further up the throat but have noticed it happens further down towards the end............i have to keep clearing my throat to dislodge it.
what i can not figure out is why it does not cause me to choke being so low down.........weakness?
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Old 07-19-2011, 02:54 PM #9 (permalink)
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Default Re: PLS and speech

Hi

Others have already answered your speech worries, but I did want to jump in on the frequent falls and broken bones.

Using a scooter or wheelchair can give you a lot of independence and actually be very beneficial in conserving your energy. Try to think of them in that light rather than as giving in.

Frankly, I am tired of falling and won't even consider going out without my scooter.

There have been some folks here with very serious falls...even some fatal ones. Please reconsider that wheelchair.
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Old 07-20-2011, 03:56 AM #10 (permalink)
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Default Re: PLS and speech

Hi Guys

Thanks for all of the responses, I think the problem with PLS is that it affects everyone differently. I also have osteoporosis, which means that often when I fall it results in broken bones. I found that using the chair when out it was making me weaker, so I feel that if I can walk while I can then it will help maintain strength, just got to take it easy. I do rely now on a walking frame both inside and out.

Take care
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Old 07-20-2011, 10:27 AM #11 (permalink)
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Default Re: PLS and speech

Quote:
Originally Posted by olly View Post
you know kevin i was going to post for advice about the same swallowing issue.
i have noticed for a while that food gets stuck in my throat,sometimes further up the throat but have noticed it happens further down towards the end............i have to keep clearing my throat to dislodge it.
what i can not figure out is why it does not cause me to choke being so low down.........weakness?
Hi olly, It does cause a "quick choke" for me only sometimes. Mine usually is right at the back of mine also, it feels like my throat is closed or tight sometimes. Usually a couple more swallows and it goes done, I just need to take my time. Liquid is a different story, it happens fast and ends up all over the walls (I tried "Thick-It"), didn't really like drinking my coffee like it was a milk shake. Basically, I have no idea what causes these problems "tight/stiff throat muscles or weak muscles". They did say during my one x-ray swallow test that the "thing" in my throat is working good so far, so it keeps it out of my lungs.
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Old 07-21-2011, 11:00 AM #12 (permalink)
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Default Re: PLS and speech

hi kevin,i have had swallowing problems for a few years were food can get stuck at the back of the throat as you described.
this new problem is different,its happening further down,just above were you have the hollow in your throat.
i dont know if were talking about the same "thing" but the part that goes up and down when you swallow seems sluggish.
i do get the throat spasms,they come and go and make my voice sound strangled.
thanks for your replies.
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Old 07-22-2011, 10:16 AM #13 (permalink)
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Default Re: PLS and speech

olly...I just wanted to mention that yesterday I went for another EMG & Swallowing test. It was my second x-ray swallow test, the first one they just mentioned how food was getting stuck in the back and they were sending my results to the doctor. At my next clinic visit it did seem like it was a big deal. Then my nero ordered another one, which I scheduled at the same hospital that I get my EMG's done at. Yesterday they said pretty much the same thing, but they pointed to something on the screen that was just a "dark area", she refered to it as something like a cartilage (but I don't think she meant it was really cartilage if I understood her), but anyway that's where she said my food was getting caught. The other thing (flap) that works between the stomach & lungs was fine, so no food was heading towards my lungs.

But it had something to do with that cartilage thing?
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Old 07-28-2011, 04:21 PM #14 (permalink)
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Smile Re: PLS and speech

Hi Mistix, I am not able to talk at all. I was diagnosed in nov 95 by dr. stanley apell in houston, used a walker for a while, fell a lot but never broke any bones. The va got me a power wheelchair in96, I'm in my third one now. if you have a choice of chairs, go to permobil.com and see what thiers will do. I have a c400 and love it. the va also got me a talking box, I type the words and it speaks them. trouble is the subject changes while I'm typing. good luck
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Old 08-06-2011, 03:22 AM #15 (permalink)
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Default Re: PLS and speech

Hi Fluvanna

Not sure if we have the same type of wheelchairs here in New Zealand. The reason that I have broken so many bones is that I also have osteoporosis, I have broken so many now that the Drs just laugh when they see my file and say how brave I am, why they say that I don't know, I just take each day as it comes. Your story made me feel better. I too have a talking box but my speech has improved so that I can be understood mostly except when I am tired or stressed, then it totally goes. I have decided the Drs don't know what the odds are and I just ignore them and listen to my body more.

Take care
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