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Beau's Mom

Mouth and tongue movements

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Beau's Mom    1,060

I have constant mouth and tongue movements that make my tongue and lips sore. My doctor told me to eat lemon drops, but they don't really help. Has anybody else had this problem?

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Beachdog    41

I have constant mouth and tongue movements that make my tongue and lips sore. My doctor told me to eat lemon drops, but they don't really help. Has anybody else had this problem?

I must confess I do not have this as a constant problem although at times I get a movement "like shivering" .... teeth chattering kind of motion and I can get my tongue to quiver when I stick it out to exercise my face (seriously).

 

I can't imagine lemon drops being a cure. Suggest you pose the question to Dr. Okun in the medical forum. He is full of good advice :-D

 

(and welcome to the forum!)

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Beau's Mom    1,060

I must confess I do not have this as a constant problem although at times I get a movement "like shivering" .... teeth chattering kind of motion and I can get my tongue to quiver when I stick it out to exercise my face (seriously).

 

I can't imagine lemon drops being a cure. Suggest you pose the question to Dr. Okun in the medical forum. He is full of good advice :-D

 

(and welcome to the forum!)

 

Thank you very much. I did ask Dr. Okun and he said that it might be orofacial dystonia and to find a movement disorder specialist. I have been looking online to find Movement Disorders Centers of Excellence and discovered that there is one in Houston, which is about 5 hours away from me. I can hardly wait until Monday morning to call and see how soon they can see me. Today I will go to my insurance website to see if the doctors there are in network for me.

 

I'm glad I joined the forum; it has already been helpful to me!

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Beachdog    41

This one may be closer and maybe can help ... it was on an NPF listing but not under the movement section.

 

Texas

Texas A&M Health Science Center

Scott & White Memorial Hospital

Plummer Movement Disorders Center

2401 S. 31st Street, 5A

Temple, TX 76508

 

http://www.parkinson.org/Improving-Care/NPF-Network/NPF-Care-Consortium-%281%29

 

Where in Tx ARE YOU? ooops ... TexasT is in Lubbock and I spent 2 years in Houston... ;o)

 

Rich

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Beau's Mom    1,060

This one may be closer and maybe can help ... it was on an NPF listing but not under the movement section.

 

Texas

Texas A&M Health Science Center

Scott & White Memorial Hospital

Plummer Movement Disorders Center

2401 S. 31st Street, 5A

Temple, TX 76508

 

http://www.parkinson.org/Improving-Care/NPF-Network/NPF-Care-Consortium-%281%29

 

Where in Tx ARE YOU? ooops ... TexasT is in Lubbock and I spent 2 years in Houston... ;o)

 

Rich

[/quo

 

I live in Burleson which is just south of Fort Worth. Is Scott and White a Center of Excellence for movement disorders? That would be closer than the one in Houston.

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Guest TexasT   
Guest TexasT

Dianne,

 

I have the orofacial dystonia. It started in my neck and moved up to my chin/jaw, mouth, tongue, and up through my ears and is now almost to the top of my head. I did have tremors in my chin, jaw, and tongue, but they did subside eventually. It is a funny feeling this dystonia, to have in my head. The only way I can describe it is like this: extreme pressure with numbness, pain, and also feels like an electrical charge. I'm hoping when it reaches the very top of my head, it will just shoot out with the charge and evaporate, never to be seen again. :-)

 

I've heard Scott & White is very good. I'm sure Baylor's Movement Disorder Center is good, too. I go to a movement disorder specialist in Amarillo, TX which is north of here.

 

I hope you find just the right center and you get answers ASAP,

Blessings to you!

Tonya

Edited by TexasT

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Beau's Mom    1,060

Dianne,

 

I have the orofacial dystonia. It started in my neck and moved up to my chin/jaw, mouth, tongue, and up through my ears and is now almost to the top of my head. I did have tremors in my chin, jaw, and tongue, but they did subside eventually. It is a funny feeling this dystonia, to have in my head. The only way I can describe it is like this: extreme pressure with numbness, pain, and also feels like an electrical charge. I'm hoping when it reaches the very top of my head, it will just shoot out with the charge and evaporate, never to be seen again. :-)

 

I've heard Scott & White is very good. I'm sure Baylor's Movement Disorder Center is good, too. I go to a movement disorder specialist in Amarillo, TX which is north of here.

 

I hope you find just the right center and you get answers ASAP,

Blessings to you!

Tonya

 

Thank you, Tonya, for your response. So far only my tongue/lips/mouth are involved; it sounds like yours is way more involved. Is there anything they can do for you? It sounds so terrible. It sounds like it's progressive, too. How quickly did yours progress? Sorry for all the questions; I am new to PD and seem to have lots of them. :-) Dianne

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Guest TexasT   
Guest TexasT

Thank you, Tonya, for your response. So far only my tongue/lips/mouth are involved; it sounds like yours is way more involved. Is there anything they can do for you? It sounds so terrible. It sounds like it's progressive, too. How quickly did yours progress? Sorry for all the questions; I am new to PD and seem to have lots of them. :-) Dianne

 

Dianne,

My first intention here was to encourage you by telling you that the tremors I had in my tongue, chin did go away. But, upon re-reading my comment, I can see how you might worry and be comparing our symptoms. I'm 43 and have had noticable PD symptoms for over 8 yrs. and had other possible, less-obvious symptoms years before that.

I don't know how much you've read on this forum or how much research you've done on PD and its variety of symptoms. It is so unpredictable when it comes to timing, rate of progression, onset, order of symptoms, etc... for each individual who has it. Although, PWP(people/person with Parkinson's) have mostly the same symptoms, you can't really compare the rate of progression, severeness of different symptoms, etc..

If there is one thing that stands out that I've learned by reading about PWP and there experiences with PD, it is this: My experience with PD will never be exactly the same as another PWP. Where I have pain with dystonia, another PWP might never experience that. Where some PWP have total body tremor, others may never experience that. And, the scenario goes on and on. I've read some instances where a PWP doesn't even have tremors. But, the most common symptoms, as you know, are tremors, slowness, rigidity(stiffness), difficulty in mobility(difficulty in buttoning your clothes, for example), shuffling feet, change in dexterity of joints/muscles(I think).

So, the best thing you can take from this forum, I believe, is how people deal with the disease by attempting to slow the progression and keeping positive and hopeful. I thought about this a lot this morning and I know what I have to do to live the best life I can. I have to stretch and exercise daily; keep a positive attitude by thinking clearly and not letting myself worry about what "might" happen. I have to trust in my Lord, Jesus Christ, to bring me through this journey. I have to keep moving and know that I have the ability to change many things that will happen to me by focusing on what I can do. Yes, I do get down in the dumps and sometimes I want to dig a hole and crawl into it to never be seen again. But, then a new day has dawned and I am hopeful again for my future and the future of my family.

Also, from my own experience, I know that stress and worry have been detrimental in making my PD worse. Stay away from stress!

 

I know you might not have wanted to hear all of this, Dianne. But, it really has helped me to say these things and I hope it has helped you, too! I do have hope and I know I have to focus on making my life better.

 

If you ever need to talk or email, just send me a private message here and I would be glad to. My sister lives in Coppell(north of Irving), so I do get to the metroplex occasionally. Maybe we can meet someday.

 

I hope this has helped you some.

God bless and always have hope,

Tonya

 

"For God has not given us a spirit of fear, but of power and of love and of a sound mind." 2Tim 1:7

P.S. This verse came to mind this morning. It has given me comfort and hope this morning. I hope it helps you, too.

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Beau's Mom    1,060

Thank you, Tonya. I am still digesting my diagnosis and coming to grips with PD. I spent the first 3 weeks after diagnosis finding out everything I could about Parkinson's because somewhere I read that I needed to do that, and to tell my family about it. So I did. It made me crazy (and them!). I was full of fear. My family members and friends all encouraged me to take one day at a time, but I was obsessed. By December 30 I was very depressed and was on the verge of going into a psychiatric unit. At that point, I decided to stop looking up information about the progression of PD and began to look for websites that could help me find out what I could do about it. Since then, I have started physical therapy, found a Movement Disorders Center of Excellence in Houston where I will go for a thorough evaluation (per Dr. Okun's advice), seen my psychologist, and made a concerted effort to stay in today. I also found this forum so I could be a part of a community where it's safe to talk about whatever is on my mind, and I'm so glad I did. I lean heavily on my Higher Power and realize, as my physical therapist told me, that God is so much greater than statistics.

 

Thank you so much for your words of kindness and hope. If you ever do get to Texas, let me know. I would love to meet you!

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Guest TexasT   
Guest TexasT

Dianne,

 

I'm your fellow Texan; born and bred. I'm in Lubbock in West Texas. I've tried to change my red rose in my avatar to yellow, but I don't know how to do it.

If you ever come this way give a holler!

 

Yee Haw,

Tonya

 

P.S. Non-Texans probably think we really talk that way.:rolleyes:

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Ndayitund    0

Maybe this is where I should have directed my post of a few days ago, hoping this topic is still of interest:

Posted Monday at 11:54 AM · Report post

Although recently (June 2015) diagnosed with "early parkinsonism", and after being introduced to Thinking Loud and Working Out Big therapies, my meds consist now of Sinemet (25-100 mg, 2/2/1.5 per day) and Azilect (1 mg per day, from June 2015 to December 2016) or Rasagiline (1 mg per day, January 2017-now), in addition to my on-going Lipitor/Atorvstatin (20 mg/day), Aspirin (325 mg/day), Plavix (75 mg/day) and Vitamin D3 (2,000 IU/day).

My major symptoms: Moderately to Severely Affected Speech/Moderately Impaired Speech; Severely Affected Handwriting;Slow Walking, Requiring No Assistance, Experiencing Some Inreased Festination, Short Steps or Propulsion; etc. 

I am getting the hang of what's going on in my treatment, except for the lips tightening most of the time when I am not thinking about my mouth and on-going speech challenges. Is this a med side effect or PD symptom? Has this been discussed here on this forum?

I have taken to chewing gum as way of controlling what's going on in my mouth. Any other suggestion and as a way of getting ready on how to express this challenge when I go to my doctor's appointment in July 2017?

 

Quote

 

Edit

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Beau's Mom    1,060

Ndayitund,

For me, the snakelike tongue movements were finally resolved by taking donepezil, a medication used for Alzheimer's. An MDS in Seattle diagnosed it as dyskinesia caused by the Sinemet. 

Dianne

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Ndayitund    0

Thanks you so much for your response. I need to be able to describe better the tightening or collapsing of lips that I am feeling and its timing vis a vis when I have been taking my meds.  I will be back on this topic with more questions probably next week. 

Many thanks again!!

Ntam

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Pathfinder    65
12 hours ago, Beau's Mom said:

Ndayitund,

For me, the snakelike tongue movements were finally resolved by taking donepezil, a medication used for Alzheimer's. An MDS in Seattle diagnosed it as dyskinesia caused by the Sinemet. 

Dianne

My hubby does those same snake like tongue movements. He curls his tongue, then it constantly moves in and out. Interesting enough he only does this in the evening before bed after he has removed his dental partials. It's as if the tongue is freed and the movement begins! His medication is spot on as he rarely has tremors now. Interesting!

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miracleseeker    675

Oh yeah.  It happens to her when the meds are at the full concentration mode.  When she had her real teeth it was so bad and a lot fell out as a result.  It was painful to listen. At one point I would give her almonds to chew on so it would lessen the itch so to speak.  It worked but I neglected to brush her teeth afterwards so it was my fault that her teeth were ruined.

 

 

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swamper    59

Dear miracle seeker:  first of all, you are too hard on yourself!  You were not the cause of your mother's teeth falling out---you provided her relief from her dyskinesia symptoms, which I am sure she needed badly.  How were you to know that she needed to brush after the almonds?  I have similar mouth chewing issues as a form of dyskinesia, and have struggled to find relief. I have tried all sorts of things and have come to the conclusion that this is the price I must pay for control of my PD symptoms.  Fwiw I admire your dedication to your mothers care.  She is blessed indeed to have you!

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Ndayitund    0

One thing/symptom I failed to express earlier: the suspicion that my two middle lower level teeth have shifted up and in, and/due to the pressure exercised by my jaws when my lips are tightening or "collappsing". I have a dentist appointment next week to double  check on this very recent observation.

And to go back to one of my original questions, is it fair to think that Sinemet is the med mostly associated mouth,  tongue and lips movements for PwP?

I really appreciate all the comments I have seen on this topic, even those from 2011. 

Grand merci!

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