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Emanol

Active member
Joined
Apr 3, 2018
Messages
63
Reason
Loved one DX
Diagnosis
09/2017
Country
SP
State
NY
City
Lugo
Hello,

My father was diagnosed with PLS a few months ago and has been experienced symptoms for more than 2 years.

I wanted to ask you all about experiences with speech therapy. My father's speech is unaffected yet and his lung function and breathing are perfect as by the latest tests, done last week. However, I thought it would be good to have some preventive speech therapy to strengthen muscles while he is fine. Our neuro on the other hand was not sure it would be necessary, since there are no bulbar symptoms yet (main symptom is spasticity, quite extended).

Any experience with preventive speech therapy? Those of you familiar with PLS or with slow-developing limb-onset ALS, when did you start noticing problems with your speech, breathing, or swallowing?

Many many thanks,
Emanol
 

grounded

Active member
Joined
Sep 25, 2012
Messages
47
Reason
PALS
Diagnosis
12/2011
Country
US
State
PA
City
Baden
My first symptom (tripping when climbing stairs) was April 2011, with ALS diagnosis in December 2011. Progression is slow as I can still get around the house with a rollator & only need a little help bathing & dressing due to very weak arms.
My breathing & speech are all still normal. Swallowing feels a bit different, but I can eat & drink anything without difficulty.
 

Trippy

Active member
Joined
Sep 8, 2014
Messages
69
Reason
DX UMND/PLS
Diagnosis
01/2014
Country
US
State
NY
City
Cny
My speech started going about four years after my first symptoms and has slowly deteriorated over two years or so. Swallowing and chewing issues developed about a year later, however eating problems are not severe enough to consider a peg tube at this point. The doctor who is the head of the PLS study at NIH (which is now winding down) said none of the 180 or so participants ever had a peg tube placed so that gave me some hope.

Regarding preventative speech therapy, I was never offered this and don’t know if it would be of any value. I doubt it. Something to ask the doctor.

Just starting nuedexta and it improved my speech and swallowing but some side effects. No breathing problems to date except breathing suppression with certain medications and supine apnea, but no cpap or bipap.

Your father might want to bank his voice while it’s still strong, though there’s no knowing if/when it may go. Most people here use Modeltalker for voice banking. You can do a search here for more information about it.
 
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