The tongue muscle


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The tongue muscle

Postby gulfcoastpsp » Tue Nov 13, 2012 4:41 am

With late stage PSP has anyone asked about the tongue muscle being contracted or in a dystonic state? Are there any techniques where the tongue muscle can be stimulated, particularly if there is a delayed state? Can a seasoned speech pathologist provide great tools/techniques where the muscle can respond? What about a tongue suppressor? Is that a great solution for delayed swallowing? Too many questions to answer...
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Re: The tongue muscle

Postby Robin » Tue Nov 13, 2012 10:10 am

I think the tongue becoming rigid and not working is very common in PSP. I've never heard about "stimulating" tongue muscles with a tongue suppressor, electricity, or anything else. (Are you suggesting stimulating the tongue while your family member is eating?) You could email Laura Purcell Verdun about this. She's a speech therapist with lots of knowledge about PSP. (Her email address is provided in the notes I've taken from her webinar on swallowing and speech issues.) There are exercises that can be done to strengthen the tongue. My father was unwilling to do those exercises. (Looking back, he was probably in the middle stage.) What about your family member?
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Re: The tongue muscle

Postby eplowman » Wed Nov 14, 2012 11:10 pm

gulfcoastpsp,

The main problem you are seeing probably is the disconnect between the tongue and the control center in the brain that controls ALL the mostly throat-related components involved in swallowing and speech (including the tongue).

Possibly, the inability of the patient to move the tongue at will may be seen as paralysis or rigidity?

Most seasoned speech therapists will acknowledge that if the problem with speech and swallowing is neurological in cause, there is nothing they can do to fix it. I would pose that as a question to your speech therapist: "Is it true that...."

My late wife Rose and I had to contend with that sad reality in her case for years.I sincerely hope it is easier going for you and your loved one!

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: The tongue muscle

Postby gulfcoastpsp » Sat Dec 15, 2012 3:53 am

In my opinion there is no disconnect. After a VitaStim therapy treatment with a seasoned Speech Pathologist she explained where the tongue muscle was weak, particularly in the region. We believe there is delay, and with delay, we can show a great swallow technique where Nector thickness is not introduced for swallow solutions. We believe if you zone in on the tongue weakness, one will know where to proceed.
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Re: The tongue muscle

Postby eplowman » Wed Dec 19, 2012 12:57 am

Gulfcoastpsp,

Please forgive me if I am misreading you.

Do you actually have a family member who has PSP? If not, what explains your interest in PSP?

You apparently are located in Asia, and it appears you have posted in the forum previously using one or more different names, promoting VitalStim therapy -- which is demonstrably useless for PSP patients.

Do you have a personal commercial interest in promoting its use? If so, you have a conflict of interest, and it would be unfair -- and unethical -- for you to try to persuade caregivers and loved ones of patients with PSP to employ these expensive, useless procedures on the patients.

Again, my apologies if I have misread you.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: The tongue muscle

Postby Robin » Sun Jan 13, 2013 6:01 pm

Ed,
Thanks for watching out for us!
Robin
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Re: The tongue muscle

Postby gulfcoastpsp » Mon Jan 21, 2013 4:38 am

I pray that this organization is not a political one as most non-profit administrative staff tend to exemplify. I wish that this forum is open to new ideas, not regional ideas as families desperate for hope wish. My home setting is in the Houston, Texas area to the popular Texas Medical Center, a world renowned area of brilliant neuro solutions, in my opinion. Everyone should listen and not dispel new ideas regardless negative experiences. I have been training medical staff in the Houston area with new care taking techniques. I have been told multiple times by family members primary and specialist doctor that my family member should be dead, had it not been with my intervention. My focus is on PSP education... reading every article, watching every video, studying every P/T, O/T and S/T technique, analyzing every medication to keep my family member stable.
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Re: The tongue muscle

Postby eplowman » Mon Jan 21, 2013 4:53 pm

gulfcoastpsp,

Thank you for clarifying. I am familiar with a number of the medical schools and medical centers from Dallas to Houston and eastward to Tyler and Longview. A lot of good reputations.

As far as I can tell, the curePSP foundation has no "political agenda." Its focus is on education of the public re. PSP, CBD, and related disorders, on fund-raising for research to find the cause of these disorders and, hopefully, a cure and/or preventive measures, and on support for caregivers (with the forum being of prime importance in this part of the curePSP mission). I benefitted immensely myself from this outreach of curePSP involving the forum during the final four years of my late wife's struggles with PSP. A lot of great information and enlightenment, encouragement in times of sorrow, disappointment, and frustration, and new friendships with people traveling the same journey with their loved ones. They understood. I no longer was "alone."

If I may ask, what is your relationship to your "family member" who is suffering? Son, daughter, sibling, spouse, or -- ?

Does that family member live with you? Or at a distance? Are you the hands-on primary caregiver for that person? If not, who is? Another relative, nursing home staff, or ?

Does that family member have PSP or some related neurological disorder? If PSP, where and when was the diagnosis made -- by a local neurologist, or at the neurological department of a major university-related medical center?

What were the initial symptoms that led your family member to an appointment with a neurologist?

What are the patient's current main symptoms? Speech, vision, swallowing problems? Still mobile or confined to a wheelchair?

It's good to know you are trying to find out all you can about PSP.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: The tongue muscle

Postby gulfcoastpsp » Fri Feb 01, 2013 1:55 am

It is my opinion that Caregivers are the smartest people in the room when it comes to solutions.... Caregivers should ask a seasoned Speech Pathologist whether the tongue muscle is weak either on the left, center or right regions of the tongue. Once defined, this is the area where the most decline will occur, in my opinion.
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Re: The tongue muscle

Postby eplowman » Fri Feb 01, 2013 11:20 pm

But GulfCoastPSP, the problem for PSP patients is NOT the "weakness" of any part of the "tongue muscle." The problem is with the "nerve lines" that lead from the brain to the control mechanisms that govern the tongue and other structures involved in speech and/or swallowing. Following my late wife's swallowing tests and speech monitoring at our large hospital, two long-experienced speech therapists told us there was nothing they could do for her -- because her swallowing and speech problems were neurological in origin.

That's why I asked you if you actually have close-up association with a loved one who has PSP. If you did, and if you've researched what PSP is and does, I think you would have observed the core issue yourself, and there would be no speculation about weakness of the tongue muscle.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: The tongue muscle

Postby gulfcoastpsp » Tue Feb 05, 2013 3:03 am

CORRECTION:

*Once defined, this is the area of the body where the most decline or delay will occur, in my opinion. If a Speech Pathologist explains left side of decline of the tongue is in decline, expect decline on this region of the body to decline, particularity in late stage in my opinion, i.e., less eye blinking.
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Re: The tongue muscle

Postby Robin » Tue Feb 05, 2013 3:16 pm

That statement is very odd to me because PSP is a bilateral condition, unlike CBD, which is generally a unilateral condition. So I don't think we usually expect to see one-sidedness in a PSPer's physical (or neurological) decline.
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