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Recommendations for brain cancer survivor for home therapy?


summerreading
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My friend had a stage 4 brain tumor removed 3 years ago, has gone through radiation and oral chemo, which she took for a while. I'm so happy she is healthy, thank God. She does struggle though. The cancer and surgery affected the speech areas of the brain. She received a little speech therapy and then insurance stopped paying for it and her family is very low income. Having a conversation is difficult as she can't remember names and words and her memory seems to be poor.

 

Is there anything she can do at home that would help? I'm not interested in trying to help her find state services, etc. I have tried to help them with their insurance and it's complicated and I can't get involved anymore. 

 

I am trying out Lumosity for my family and I think it might be too hard for her for comprehend the directions. Is there something simpler but effective I could show her?

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Most realistically, no. Her aphasia could have been caused by tumor or surgery or treatment and depending on what was damaged, recovery is difficult. Speaking is a complicated thing--it involves memory, retrieval, and motor patterns.

All of those things are in different places in the brain. If she is bilingual, one language may even be more affected than another...

 

Please continue to be her friend, even if it's difficult for her to get her words out. Is she able to have more fluent conversations by text?

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Most realistically, no. Her aphasia could have been caused by tumor or surgery or treatment and depending on what was damaged, recovery is difficult. Speaking is a complicated thing--it involves memory, retrieval, and motor patterns.

All of those things are in different places in the brain. If she is bilingual, one language may even be more affected than another...

 

Please continue to be her friend, even if it's difficult for her to get her words out. Is she able to have more fluent conversations by text?

 

She is bilingual and I think she speaks better in her native language. No her texts are ok, but not fluent.

Thanks for the encouragement to keep visiting her. 

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Music can be helpful.  Maybe you could pull up some things for her to listen to that were popular in her native language when she was a child.

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To add to the music suggestions...if she likes to sing, I notice that fluency is easier with music. Perhaps a community or church choir would give her a sense of accomplishment and connection. The words just come out easier and memory binds them together in a special way. 

 

If there are organizations in the area for her first language, it might be easier for her to connect with that. 

 

Sometimes it helps to be involved in a volunteer organization where she can help people physically without the need for speech. Generally the feeling of acceptance among the volunteers and focusing on others can build feelings of accomplishment and connection. 

 

 

My MIL underwent a similar procedure when dh was in middle and high school. There isn't necessarily a standard therapy for recovery. With that kind of diagnosis you are considered lucky to be alive and having affected speech, motor, memory is expected. There is enough physical debilitation that therapy is rarely prescribed (which is frustrating for people with lesser impairment who may or may not get something out of it...but what do I know  :glare: ). 

I didn't know MIL before the situation, but from what I've seen with her it's important that the person have a positive connection to their community and to be able to contribute in their own way to the people around them. It's easy to fall into isolation and then depression. MIL walked all over their small town and volunteered at church. She made friends with people who had their own struggles and was a great listener. We would roll our eyes at the people she brought home sometimes. I miss those days. Now she's going through some mental deterioration and can't walk or talk much. Her frustration is so evident. 

 

I would say, stay connected and do your best to help your friend to connect to others. Accepting limitations is important but having goals and positive work/impact with the people around her is also important. I'm sorry I can't help you more. 

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Does she have an iPad?  There are so many apps now for aphasia practice at home.  Some are free, and some have a fee.  

 

There are also workbooks she could get, like this one:

 

https://www.amazon.com/Aphasia-Workbook-Daily-Living-Book/dp/0967750644/ref=sr_1_4?ie=UTF8&qid=1498052736&sr=8-4&keywords=aphasia+workbooks

 

Sometimes just reading out loud, making sure to point to and say each word, can help.

 

Many cities have free aphasia support groups that meet.

 

And the above idea of singing old familiar songs is a great idea.

 

Language is very complicated, and there are many, many aspects to it that all work together.  A qualified speech therapist can be so helpful, first in discerning exactly which speech components were affected, and then targeting those particular areas.  I'm sorry her therapy ended.  Some people, even with very severe aphasia, can make a tremendous recovery over the years if they are very determined and with a lot of work.  However, I'm most experienced with post-stroke aphasia, not post-tumor aphasia.

 

It is very, very kind of you to want to help her.

 

 

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Does she have an iPad?  There are so many apps now for aphasia practice at home.  Some are free, and some have a fee.  

 

There are also workbooks she could get, like this one:

 

https://www.amazon.com/Aphasia-Workbook-Daily-Living-Book/dp/0967750644/ref=sr_1_4?ie=UTF8&qid=1498052736&sr=8-4&keywords=aphasia+workbooks

 

Sometimes just reading out loud, making sure to point to and say each word, can help.

 

Many cities have free aphasia support groups that meet.

 

And the above idea of singing old familiar songs is a great idea.

 

Language is very complicated, and there are many, many aspects to it that all work together.  A qualified speech therapist can be so helpful, first in discerning exactly which speech components were affected, and then targeting those particular areas.  I'm sorry her therapy ended.  Some people, even with very severe aphasia, can make a tremendous recovery over the years if they are very determined and with a lot of work.  However, I'm most experienced with post-stroke aphasia, not post-tumor aphasia.

 

It is very, very kind of you to want to help her.

 

I think this workbook would be very helpful. She does have iPad. I'll look through it with her next time.

 

Thanks!

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If she qualifies for Social Security Disability then she should be able to get on Medicaid as secondary to the family's private insurance & they will pay for rehab services that the primary doesn't (or pick up the deductible/co-pays when the primary does cover it). Applying for SSI is a real pain but can be a big financial help.

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 She received a little speech therapy and then insurance stopped paying for it and her family is very low income. Having a conversation is difficult as she can't remember names and words and her memory seems to be poor.

 

Is there anything she can do at home that would help? I'm not interested in trying to help her find state services, etc. I have tried to help them with their insurance and it's complicated and I can't get involved anymore. 

 

 

You can try contacting Austin speech labs http://austinspeechlabs.org/

They help low income families. 

http://austinspeechlabs.org/services/client-services and they are located in Austin and they do  Teletherapy and are well regarded in the Austin area.

 

HTH.

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I was going to suggest this, along with an iPad to type conversation, if she can manage it.

Depending on the severity of the problem, you could make her a picture board with pictures of common needs and wants.


Sent from my iPhone using Tapatalk

 

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