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Speech Deficit

connsteele
Posts: 232
Joined: May 2011

Antiquiimom and Surviormannc have both posted about speech deficits. Our son (age 34, dx AA3, 4-13-11, inoperable) also is dealing with this, among other deficits (gross and fine motor). His tumors are located in the cerebellum. I think that the speech impairment is the hardest to deal with as it is very isolating for him. Most of the time, we can understand him. But often times, we have to ask him to repeat himself, and he gets very frustrated that we can't understand what he's saying. And for those not around him 24/7, they have an even harder time understanding what he says, which makes them uncomfortable. You can see it in their body language...looking away, appearing impatient like they want to get away, or just simply nodding their heads like they understand. The result is that other than a friendly hello, they don't engage him a conversation. Can't really blame them...before this happened to us, I would have probably acted the same.

The result is that I think our son decides just to shut down, and isloate more.

Cognitively, he is still pretty sharp, albeit slower to process information, like SurvivormanNC has described.

He was in speech therapy for a while, which I think helped some. Also, the Speech therapist said a good exercise is for him to look at a picture, and describe what's going on in the picture.

Brain cancer is its own beast...not like other cancers. Somedays I wonder how we can go on. But then a sunny day comes along, and I know there is hope for better days.

Hugs and prayers for all of us going through this.

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

Dear Connsteele,

It must be so hard; it must be a constant reminder of the MONSTER in your son's brain; it must be very isolating for him. My sister is lucky in the sense that her tumor was located in the right frontal lobe and that by being right handed most of her eloquent speech is on the left. Secondary speech centers could have been on the right, and she was terrified the day of the surgery that she would loose some ability to speak. After the surgery, she had me bring in her music sheet in the ICU, to see if she could still humm a melody by reading it; she made sure she would carry her conversations in french, english and italian. So she came out of the surgery untouched. But the radiation fatigue make her have concentrate more to be able to have a conversation.

Once she broke down and screamed in rage: "Why does it have to be a brain tumor? The brain is who I am! I would rather have any other cancer!"

I still cry when she cannot see me; I still feel despair and a lot of anger; some people have their faith to carry them through this journey and I am envious of the support this can provide.

From a practical side, can your son continue with speech therapy? Are there any group therapy he can go to (if he wants to go... I still think my sister would benefit from a brain cancer support group but she does want to go; she doesn't want to see a private psychologist: "The people who don't have brain cancer will look at me with pity and think, thank God I am not her."

Does your son sees a neuropsychologist? they work on goals for cognition, speech etc.. I think you mentioned at one point he was and he had reach his goals. Maybe setting new goals? If describing a picture is good for him, then maybe private tutoring?

I remember our NO at Hopkins said: keep the mind active.

A study showed that people who are able to speak multiple languages have a lower and a delayed incidence of Alzeimers.

With all my love,

Julia

connsteele
Posts: 232
Joined: May 2011

Thanks for the reply. I know what your sister is saying: if one has to have cancer, why brain cancer? Not that other cancers are a cake walk. But brain cancer strikes at the very essence of a person.

It helps to hear someone else who feels this way.

I like what you said about the bell curve approach to having hope. When our son was first diagnosed at the age of 8, he was given a 20 percent chance of surviving ten years. Well, it's been 26 years. That's definelty on the far end of the bell curve, so I know it can happen.

Yes, the previous radiation he had at age 8 is what caused this second tumor. But if radiation gives your sister another quarter century of quality life, who knows what amazing breakthroughs in treatment will come about during that time. Stay the course. And seize the moment: skiing and traveling sound like good medicine.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Connsteele and Julia:

Yes, the speech impairment is heart wrenching. My daughter has cried and said the same thing Julia's sister said, "Why not any other cancer, why my brain?! I would take any other cancer Mom!" My heart breaks for her because she is so intelligent. She has always been an honor student and now she stuggles with her handwriting and her speech. Her speech has gotten better with the speech therapist, but it is not like before.
I am still worried sick about her. I have not been getting on here because sometimes I get too worried about what might happen to her. We are still deciding between MD Anderson and UC San Francisico. We have a lot of word games at our house and Sarah likes to play them, but she is frustrated too.
Keep praying! I pray for all of you. Wishing you all life's blessings each day.

Edna

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

David had speech issues when he did the BBBD treatment last month. It was weird...he said it took a supreme effort to talk. But when he talked, you could understand him easily and he made sense. But he had a flat intonation to his voice, and he talked a little louder than usual. Like a deaf person. His response time was delayed too. It took him about 3 seconds, sometimes 5 or more seconds, to reply. It doesn't sound like a big deal, but it was very noticeable and disturbing.

At first, he didn't talk at all. I begged him to say just one word...just say "Mom." Or "No." He looked at me like he was scared and he took a breath and then he exhaled it with a groan, like he tried but didn't remember how to actually talk. It was so devastating. I thought it was permanent. The nurses tried to tell me that he was being "passive-aggressive" because sometimes he could talk, and sometimes he couldn't. They thought he was just refusing to answer. I don't blame them....they have some patients who are upset about their situation and refuse to cooperate. But David isn't like that.

I agree with you....being unable to talk does isolate you. Our NO told us that we should ask a lot of questions and allow David extra time to answer. We also had David look at pictures and tell the therapist what the pictures were all about. It helped him talk and it helped with his memory. Actually, he didn't even have any trouble with his memory at all. He remembered every little detail in the pictures, down to the name of the restaurants, where they were, and what he had for dinner. He remembered more than I did.

I hope that your son can keep working with his speech therapist and that his speech will improve. One of our therapists told us that the brain can learn new pathways to accomplish tasks, and that exercising and challenging the brain can produces some amazing results. I hope that your son doesn't lose heart, and that he will keep pressing on and working at his speech. Not being able to talk to people must be so lonely.....

Love and blessings,
Cindy in Salem, OR

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