Status
Not open for further replies.

Kenny H

Member
Joined
May 22, 2008
Messages
22
Reason
DX UMND/PLS
Diagnosis
02/2005
Country
US
State
RI
City
Providence
I have had PLS for almost 4 years. My legs are effected the most...very stiff and with difficulty going down steps and walking on uneven surfaces. One PT described me as having no brakes! However, within the last 6 months, it has effected my speech. A speech therapist described it as a slowing down of your tongue and mouth muscles. It is worse when I am fatigued or stressed. Words that may have been tongue twisters in the past [statistics, Massachusetts] are sometimes near impossible to get out. I am in sales and do some public speaking....needless to say, this has had a negative impact. Phone conversations are sometimes the worst.

The symptoms, like all the PLS stuff, does seem to vary. Sometimes it is like nothing has changed and other times..yikes. It can even happen over the duration of a conversation! Anyone out there having similar experiences? I am looking for coping mechanisms...any meds that may have worked...any types of excercises or alternative therapies.

Kenny
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
kenny

my speech is normally ok but when i too am fatigued i slurr my words and at worst have been told i sound drunk. since my jaw problems when it is bad i have problems articulating words and they come out wrong,something my son notices more than others.
i often think pls is very similar to ms, as the symptoms can come and go or get worse or better during any course of time. i can have good days/weeks or bad either by overdoing things or for no reason at all.
my advice after 9yrs of pls is avoid stress,pace yourself with daily life and challenges.
stretching the muscles is vital to avoid joint problems and i think is better than any other physio as i get easily fatigued,my muscles are weak and can not tolerate repetative exercise. get as many adaptions as possible to make life easier,i have had another assesment by a occupational pt this morning and she is arranging for something to make my toilet higher also my sofa/chair to make it easier to get up.
baclofen have been my saviour over the years but i mentioned in another thread rosemary essential oil is a natural pain/muscle relaxer that can be added/5drops to soak in a bath or 1-2 drops in a nonperfumed body lotion and massaged in.
take good care
caroline:-D
 

Kenny H

Member
Joined
May 22, 2008
Messages
22
Reason
DX UMND/PLS
Diagnosis
02/2005
Country
US
State
RI
City
Providence
I tried baclofen about two years ago and it did nothing. However, my symptoms have progressed some. Do you think the balcofen helps with your speech issues?
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
kenny

i am not sure,if its due to bulbar spacticity maybe, i did find out that baclofen can help with the facial spasms i have so it may work,you can try .
take care
caroline:-D
 

Judith

Distinguished member
Joined
Jan 31, 2007
Messages
338
Reason
DX UMND/PLS
Diagnosis
12/2006
Country
US
State
CA
City
Yucca Valley
Hi Kenny,
I have had PLS for 4 years also. It started in the bulbar area with me. My limbs were fine. I was a courtroom clerk and did a lot to talking also on my job. My first symptom was my throat seemed to close up and I would speak through my nose. It didn't happen all the time and I don't think it was noticable at work. Then after about 8 months the words wouldn't come out and I would have to stop and swallow. I got about 3 words out to each swallow. Then I started to slur. Talking on the phone was the worse. I finally had to retire from work. My articulation got worse and worse until finally everything now is just garble. From the onset of the first symptom to garble was about 2 yrs. I've been using a dry erase board to write down my talk. I am now in the process of getting a speech generating device through "Words Plus". If you are on Medicare, they will pay 80% of the device. Speak to your speech theratist about it. There are several companies who make these devices.

Judith
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Judith,

When you say garble, does that mean that you cannot be understood.
 

Judith

Distinguished member
Joined
Jan 31, 2007
Messages
338
Reason
DX UMND/PLS
Diagnosis
12/2006
Country
US
State
CA
City
Yucca Valley
Yes, unfortunately, that is what I mean.
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
thanks Judith and I'm sorry to hear that.

This is disease is definitely not cut and dry. No two people have identical progression or symptoms etc. The variations on it on many.

My mom started with bulbar symptoms almost 2 and a half years ago and it has already progressed to her legs. However, she can still speak (slowly) and is understandable and she can walk very short distances without assistance.
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Have any of the long time speech suffers noticed that their face seems more full because the muscles in their cheek area have been overcompensating for the slowed tongue and gotten more full?
 

Judith

Distinguished member
Joined
Jan 31, 2007
Messages
338
Reason
DX UMND/PLS
Diagnosis
12/2006
Country
US
State
CA
City
Yucca Valley
I have had the speech problem for 4 years now and have not experience that problem. I've just experienced the left side of my mouth droops somewhat.

Judith
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
Reading this post it seems as though PLS and ALS symptoms are the same
How do you know its pLs and not ALS

Pat
 

DBowman

Active member
Joined
Feb 14, 2007
Messages
74
Reason
DX UMND/PLS
Country
US
State
Virginia
City
Harrisonburg
Patricia and Kenny!

The general symptoms between ALS and PLS ARE similar! And I myself was THOUGHT to have ALS(mine started with the bulbar problems) but because mine happened slowly over the course of several years they diagnosed me with PLS(after numerous tests were done). I see my neuro every 6 months and he just checks my reflexes, strength,
walking(more like shuffling), balance, speech and checks for any muscle atrophy.
Kenny, ...my brain thinks of words faster than I can articulate and I can sound like a drunkard! If I slow down and take more care in pronunciation, I can say just about anything. If I go on and on too long I'll get really NASAL! I'm supposed to pause periodically when I'm going on and on. If I'm tired people will get shorter versions of what I intended to say. I don't think Baclofen has helped me but slowing my speech has.
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
The general symptoms between ALS and PLS ARE similar! And I myself was THOUGHT to have ALS(mine started with the bulbar problems) but because mine happened slowly over the course of several years they diagnosed me with PLS(after numerous tests were done). I see my neuro every 6 months and he just checks my reflexes, strength,
walking(more like shuffling), balance, speech and checks for any muscle atrophy.
Kenny, ...my brain thinks of words faster than I can articulate and I can sound like a drunkard! If I slow down and take more care in pronunciation, I can say just about anything. If I go on and on too long I'll get really NASAL! I'm supposed to pause periodically when I'm going on and on. If I'm tired people will get shorter versions of what I intended to say. I don't think Baclofen has helped me but slowing my speech has.

my question is how do I know if I have PLS. I started with speech problems and for 6 years had only speech problems and now limb onset. I have it 9 years I heard you live longer with PLS I wonder why my nuero hasnt brought that up to me is there are sign different for PLS than ALS. I was told I have ALS

Thanks Pat
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Patricia,

You definitely have very slow progression regardless of whether it is PLS or ALS. You can look on any site that talks about ALS and the life span is much shorter than PLS. Today people are living with ALS for much longer than previously however progression seems to be much faster than with PLS.
 

Kenny H

Member
Joined
May 22, 2008
Messages
22
Reason
DX UMND/PLS
Diagnosis
02/2005
Country
US
State
RI
City
Providence
This May Sound Nuts...

A few weeks ago, I posted a note about the effect of Nicotine on speech. I am currently experimenting with a 2mg nicotine lozenge. I originally tried smoking a pipe [which I used to do --tobacco, by the way] and the effect was amazing. I don't want to smoke tobacco on a regular basis, so I am trying the lozenge. I may move on to a patch and see what happens if I have a more steady, stronger doze. I know this sounds nuts, but I swear it works.
 
Status
Not open for further replies.
Top