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Amy Voris

Timing of speech problems

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I was reading through some of the posts & read one that is similar to me. He had asked if Sinemet was causing his speech problems. I don't think it is the Sinemet per se but

when I am "off", my speech is fine & when my meds are working, my speech is terrible. I can't be understood at all - extremely garbled.

I was wondering if you knew why this is happening ? Seems like when my body works, my speech goes bad. Why can't they be on the same page ? I know - it is probably yet another unknown of PD.

I also have another question. What do you feel is the best system, curriculum, program (not sure what word I am looking for)

for garbled speech ? I have done the LOUD program & felt that all

it did was make me talk louder- at times I need that. I've also had sessions with a speech therapist & all I did was repeat (or read) words. It did not help. It is very discouraging & I have gotten to the point that I hardly talk anymore. That's not good.

Any advice ?

Thank you !

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Dear Amy,

 

It is unusual to have Sinemet have such a dramatic impact on speech.  However, I have learned that each person with PD is unique in their characteristics and that may be a unique manifestation for you.  I would like to know more about your experience with LSVT LOUD so that I can answer your question about therapy and give you the best advice possible. 

 

When did you have LSVT LOUD?

Did you go 4 times a week for 4 weeks for a total of 16 individual one-hour sessions?

How often did you do your homework and carryover assignments during and after the completion of treatment?

Do you have idiopathic Parkinson disease?

 

The literature is very clear about exercise based treatments being beneficial for most people with PD so I am interested in why LSVT LOUD might not have worked for you.  I look forward to your answers and continuing our conversation on the forum.  I am sure your questions will help others also.

 

Sincerely,

 

Leslie Mahler

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Dr. Mahler,

 

Thanks for the quick response. Yes, I have idiopathic PD. I was 38 when I was diagnosed and now I am 52. I did go through the LSTV LOUD program. I took it 2 yrs ago. My speech was not bad then. I was just starting to get short of breath at the end of a long sentence. Taking a deep breath before I speak does help me. I have to admit I don't always do that. Now my speech is garbled. Would it be beneficial to go through the LOUD program again ? Is there such a thing as a refresher ? But I do understand the purpose of doing the work for 4 days/4 weeks; the repetitiveness of it.

I appreciate any advice that you have.

Thank you !

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Thank you Dr. Mahler. I thought I had sent you a response but I don't see it any where. If you have read it then some of this will be a repeat.

Yes, I have idiopathic PD. I was 38 when I was diagnosed and soon to turn 53. So I have been dealing with this awful disease for awhile. I don't

remember what is like to be normal.

I did do the LSTV LOUD program about 2-3 years ago. I was going to ask you if there was some kind of refresher but I saw that  you had answered

some one else with that information. It is 2-4 one hour sessions, correct ? 

I just sent a message to the S/L clinician. She is the closest to me but she also offers eLOUD (telemedicine).. I would like to try that.

If this doesn't work out, do you have any advice ? I am basically not talking much (which is not like me   :lol: ) because no one can understand me. And I need to make phone calls which is virtually impossible right now.

 

Thanks for your expertise and "listening" to me. :)

 

Amy Voris

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Amy,

The best thing to do after the completion of LSVT LOUD is to continue the daily exercises (about 10 minutes a day) every day to stay in shape and then use normal loudness in your everyday communication.  The type of follow-up sessions you are asking about are called "tune-up" sessions.  These are customized to the individual patient so may range in the number of sessions that you receive.  However, all tune-up sessions are regular LSVT LOUD therapy sessions, which are intensive with multiple repetitions for one hour of individual therapy.  The appropriate level of the hierarchy will be determined by your speech-language pathologist.  eLOUD could work if this is the same speech-language pathologist who saw you for your treatment.  If not, then you should have at least one session with the eLOUD certified speech-language pathologist in person before continuing by telemedicine.

 

I hope this helps.  Please email again if you have additional questions.

 

Sincerely,

 

Leslie

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