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Brain Tumors and Aphasia

Posted by @hopeful33250, Nov 15, 2017

Hi All:

As we know, the ability to communicate is important to all of us, whether we are introverts or extroverts – we all need to talk to others. However, often brain disorders like tumors, neurological disorders like MS or Parkinson’s (to just name a few) can affect our communication efforts. We might have a difficult time finding the right words, or we might find the words, but discover that they are coming out sounding garbled or not in the right order. These problems affecting speech can be referred to as Aphasia. The National Aphasia Association recently sent out information about a new book that addresses this. Written by Joe Biden, whose son had brain cancer, here is the link to this article, https://www.aphasia.org/stories/beau-biden-aphasia/

What has been your experience with Aphasia? Have you or a family member been affected by a communication disorder? If so, please share with us.

Teresa

REPLY

Hi, @hopeful33250. Thanks for this post — really does sound like aphasia is something important to address.

I see that @dianaodecatur, @mkf1, @KMH, @ikampel2, @Gray,@parker80138, @patrassi, @techi, @gremeika, @ditim, @ndapanda, @marieelise,@joturner3,@gremeika, @aphasia and @dianaodecatur have talked about this or other speech issues from brain disorders, and thought they might have some experiences to share. I also believe that @cynaburst, @IndianaScott or @dawn_giacabazi might have some insights on this topic.

Wondering if you could share any ways aphasia may have affected you or a loved one, as well as what may have helped?

@lisalucier

Hi, @hopeful33250. Thanks for this post — really does sound like aphasia is something important to address.

I see that @dianaodecatur, @mkf1, @KMH, @ikampel2, @Gray,@parker80138, @patrassi, @techi, @gremeika, @ditim, @ndapanda, @marieelise,@joturner3,@gremeika, @aphasia and @dianaodecatur have talked about this or other speech issues from brain disorders, and thought they might have some experiences to share. I also believe that @cynaburst, @IndianaScott or @dawn_giacabazi might have some insights on this topic.

Wondering if you could share any ways aphasia may have affected you or a loved one, as well as what may have helped?

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Yes, I have two years of Hyperbaric Oxygen Chambers and the last two years have had Stem cell treatment in Freeport, Bahama. This in connection with Vascular Dementia, probably Alzheimer and TBI.  The diagnoses is over 7 years and with other mind games I have slowed down the progress of  terrible disease.    Jay

@lisalucier

Hi, @hopeful33250. Thanks for this post — really does sound like aphasia is something important to address.

I see that @dianaodecatur, @mkf1, @KMH, @ikampel2, @Gray,@parker80138, @patrassi, @techi, @gremeika, @ditim, @ndapanda, @marieelise,@joturner3,@gremeika, @aphasia and @dianaodecatur have talked about this or other speech issues from brain disorders, and thought they might have some experiences to share. I also believe that @cynaburst, @IndianaScott or @dawn_giacabazi might have some insights on this topic.

Wondering if you could share any ways aphasia may have affected you or a loved one, as well as what may have helped?

Jump to this post

Hello Jay, @aphasia

Thanks for sharing your story with us. How wonderful that in spite of your diagnosis over 7 years ago that you have been able to slow down the progression. No doubt that took a lot of intentional effort on your part. Congratulations on your success.

If you are comfortable doing so, can you share with us the ways in which Aphasia affected you? Did you have word finding problems or speech that was not easily understood? Also, you mentioned “other mind games.” Are you referring to some type of cognitive/speech therapy or puzzles, and/or word games?

Thanks again for your contribution to this discussion!

Teresa

My interest in communication problems came about several years ago. I was diagnosed with a paralyzed vocal cord and was told this was the reason for my communication difficulties (soft, raspy voice along with garbled words, etc). The speech therapist explained that since I had only one working vocal cord all of my energy was being used-up creating sound.

Needless to say, during this time I had become very quiet because I needed to conserve my energy. Any effort to talk after the early morning hours were difficult and strained. I used my words sparingly and often not at all. The inability to express myself when and how I wanted to, resulted in a lowered self-esteem and anxiety. (Yes, communication is important!)

I had the recommended surgery to put an implant in the paralyzed vocal cord and also continued with speech therapy. I also use a vocal cord strengthening device called an EMST 150 (expiratory muscle strength trainer) which I purchased online. The combination of the surgery, speech therapy and daily use of the EMST 150 has resulted in better communication as well as a more positive feeling about my own ability to express myself.

We would love to hear from all of you about your story of a communication disorder. As you are comfortable doing so, will you share with us?

Teresa

@lisalucier

Hi, @hopeful33250. Thanks for this post — really does sound like aphasia is something important to address.

I see that @dianaodecatur, @mkf1, @KMH, @ikampel2, @Gray,@parker80138, @patrassi, @techi, @gremeika, @ditim, @ndapanda, @marieelise,@joturner3,@gremeika, @aphasia and @dianaodecatur have talked about this or other speech issues from brain disorders, and thought they might have some experiences to share. I also believe that @cynaburst, @IndianaScott or @dawn_giacabazi might have some insights on this topic.

Wondering if you could share any ways aphasia may have affected you or a loved one, as well as what may have helped?

Jump to this post

Hello Jay, @aphasia

I was thinking about you and wondering if you could share with us any speech therapies you have found helpful. I have personally found that reading out loud and singing to be very good therapies for speech problems.

What has been most helpful for you?

Teresa

@lisalucier

Hi, @hopeful33250. Thanks for this post — really does sound like aphasia is something important to address.

I see that @dianaodecatur, @mkf1, @KMH, @ikampel2, @Gray,@parker80138, @patrassi, @techi, @gremeika, @ditim, @ndapanda, @marieelise,@joturner3,@gremeika, @aphasia and @dianaodecatur have talked about this or other speech issues from brain disorders, and thought they might have some experiences to share. I also believe that @cynaburst, @IndianaScott or @dawn_giacabazi might have some insights on this topic.

Wondering if you could share any ways aphasia may have affected you or a loved one, as well as what may have helped?

Jump to this post

Please send me your email address, 

@lisalucier

Hi, @hopeful33250. Thanks for this post — really does sound like aphasia is something important to address.

I see that @dianaodecatur, @mkf1, @KMH, @ikampel2, @Gray,@parker80138, @patrassi, @techi, @gremeika, @ditim, @ndapanda, @marieelise,@joturner3,@gremeika, @aphasia and @dianaodecatur have talked about this or other speech issues from brain disorders, and thought they might have some experiences to share. I also believe that @cynaburst, @IndianaScott or @dawn_giacabazi might have some insights on this topic.

Wondering if you could share any ways aphasia may have affected you or a loved one, as well as what may have helped?

Jump to this post

Hello @aphasia

If you would like to send me a private email message, please go to the top of this screen and click on the little envelope icon. That will take you to a place where you can send a private message. When you get there hit, “Compose” and then put in “hopeful33250” (no @ sign here) and then my name will come up below. Just click on that and then you can compose a message to me. This will not post on the public conversations.

Teresa

Hello All:

I found this article regarding the power of singing in order to help restore speech after a stroke. I thought you would find it interesting, https://www.npr.org/sections/health-shots/2011/12/26/144152193/singing-therapy-helps-stroke-patients-speak-again.

Do you know of any experiences with singing helping your speech?

@dianaodecatur, @mkf1, @KMH, @ikampel2, @Gray,@parker80138, @patrassi, @techi, @gremeika, @ditim, @ndapanda, @marieelise,@joturner3,@gremeika, @aphasia and @dianaodecatur @aphasia

@hopeful33250

Hello All:

I found this article regarding the power of singing in order to help restore speech after a stroke. I thought you would find it interesting, https://www.npr.org/sections/health-shots/2011/12/26/144152193/singing-therapy-helps-stroke-patients-speak-again.

Do you know of any experiences with singing helping your speech?

@dianaodecatur, @mkf1, @KMH, @ikampel2, @Gray,@parker80138, @patrassi, @techi, @gremeika, @ditim, @ndapanda, @marieelise,@joturner3,@gremeika, @aphasia and @dianaodecatur @aphasia

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What is my correct P?W ? 

@hopeful33250

Hello All:

I found this article regarding the power of singing in order to help restore speech after a stroke. I thought you would find it interesting, https://www.npr.org/sections/health-shots/2011/12/26/144152193/singing-therapy-helps-stroke-patients-speak-again.

Do you know of any experiences with singing helping your speech?

@dianaodecatur, @mkf1, @KMH, @ikampel2, @Gray,@parker80138, @patrassi, @techi, @gremeika, @ditim, @ndapanda, @marieelise,@joturner3,@gremeika, @aphasia and @dianaodecatur @aphasia

Jump to this post

@aphasia

Are you referring to password? I would not know what that is.

Teresa

@hopeful33250

Hello All:

I found this article regarding the power of singing in order to help restore speech after a stroke. I thought you would find it interesting, https://www.npr.org/sections/health-shots/2011/12/26/144152193/singing-therapy-helps-stroke-patients-speak-again.

Do you know of any experiences with singing helping your speech?

@dianaodecatur, @mkf1, @KMH, @ikampel2, @Gray,@parker80138, @patrassi, @techi, @gremeika, @ditim, @ndapanda, @marieelise,@joturner3,@gremeika, @aphasia and @dianaodecatur @aphasia

Jump to this post

?????????????????????

@hopeful33250

Hello All:

I found this article regarding the power of singing in order to help restore speech after a stroke. I thought you would find it interesting, https://www.npr.org/sections/health-shots/2011/12/26/144152193/singing-therapy-helps-stroke-patients-speak-again.

Do you know of any experiences with singing helping your speech?

@dianaodecatur, @mkf1, @KMH, @ikampel2, @Gray,@parker80138, @patrassi, @techi, @gremeika, @ditim, @ndapanda, @marieelise,@joturner3,@gremeika, @aphasia and @dianaodecatur @aphasia

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Hi Aphasia,
I removed your private email address from your message above. Connect is a public website and we recommend not sharing personal contact information. We don’t want you to get unwanted spam emails.

I see that you would like to connect with Teresa by private email. You can send members a private message following these instructions:
1. Click on the member’s name. In this case @hopeful33250
2. Click on Send Private Message.
3. Write your message.
4. Click Send message.

However, I strongly encourage you to post a message to Teresa here in this discussion. There are many people living with aphasia who would appreciate connecting and sharing experiences with both you and Teresa. By replying to her in this discussion, more people will join in and we can form a support group.

I look forward to hearing from you too.

@hopeful33250

Hello All:

I found this article regarding the power of singing in order to help restore speech after a stroke. I thought you would find it interesting, https://www.npr.org/sections/health-shots/2011/12/26/144152193/singing-therapy-helps-stroke-patients-speak-again.

Do you know of any experiences with singing helping your speech?

@dianaodecatur, @mkf1, @KMH, @ikampel2, @Gray,@parker80138, @patrassi, @techi, @gremeika, @ditim, @ndapanda, @marieelise,@joturner3,@gremeika, @aphasia and @dianaodecatur @aphasia

Jump to this post

  

@hopeful33250

Hello All:

I found this article regarding the power of singing in order to help restore speech after a stroke. I thought you would find it interesting, https://www.npr.org/sections/health-shots/2011/12/26/144152193/singing-therapy-helps-stroke-patients-speak-again.

Do you know of any experiences with singing helping your speech?

@dianaodecatur, @mkf1, @KMH, @ikampel2, @Gray,@parker80138, @patrassi, @techi, @gremeika, @ditim, @ndapanda, @marieelise,@joturner3,@gremeika, @aphasia and @dianaodecatur @aphasia

Jump to this post

Hello @aphasia

It looks like you tried to post a message here. Try again or let us know if you need assistance.

Teresa

June is National Aphasia month and I would like you to know about a program that will be available on Friday, June 22, online. This program will introduce you to a therapy called, "Work Out Your Words." This program synchronizes language and cognitive tasks with movement. Sounds like a great idea to me for movement and speech problems which I have that occur very unpredictably. I am looking forward to watching this, please join me! Here is the link, http://workoutyourwords.com/pdf/Work%20Out%20Your%20Words%20flyer%20June.pdf

Teresa

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