Speech Deficit

Speech
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

speech issues
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