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Amy Voris

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About Amy Voris

  • Rank
    Newbie
  • Birthday 02/05/1963

Profile Information

  • Gender
    Female
  • Location
    Rutherfordton, North Carolina
  • Interests
    Scrapbooking, sewing
  1. 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 ) 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
  2. 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 !
  3. I have an question about the timing of when I should eat protein. The problem is that I take meds every 1 1/2 hrs. So it is very hard to time it. For example, should I take meds at 4:30 then plan on eating at 5:00 because my next dose will be due at 6:00 ? It usually takes me about 15-20 min to eat which means it would be less than an hour before my next dose. Also, is it just another PD unknown but I have no feelings of hunger ? I can go all day & never feel hungry. It also effects my sense of thirst. I have a terrible dry mouth but not that thirsty feeling except for occasionally my mouth gets so dry that I have a hard time breathing until I get some fluids. Thank you !
  4. 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 !