Mother of daughter with short term memory

by Cindi Wilkof
(Canton, Ohio, USA)

My daughter is 39 in a few days. It was 14 years ago as she was graduating from college that she was diagnosed with a brain tumor.

memory problems story
She had to undergo treatments because surgery was too risky. But the tumor returned. She then went to NYC for a STEM CELL TRANSPLANT done at MEMORIAL SLOAN-KETTERING. They saved her life.

But she needs to meet others like her to talk to. So please feel free to contact Heather.

If you want to know more about her, our local newspaper published a big article on her. If you just google "canton repository" and put in "Lutton". You will see article "Mom seeks support for brain-injury sufferers".

I, her mother, wrote the article, except for a few quotes and picture by the editor.

(Here is a direct link to the article: Mom seeks support for brain-injury sufferers)

The main thing my daughter is experiencing now is depression because she cannot find a job with her memory problems. She could if an employer would have patience with her. If Heather would be shown what to do and it was repetitive, she could learn it.

Then it's hard to find friends, the kind that relate to her DISABILTY. So as a result she is very lonely. The only social life she has is with her family.

She never married, as this happened when graduating. In fact most of her friends didn't even know what had happened. But if they did, they still didn't stick around. Very sad.

I am trying to form a social group with people like my daughter. Her disability is so slight you wouldn't even notice any visible signs. Just after spending time with her would you notice some repetition. But if I can find enough people for a group, then we can do some activities together.

Doug's Reply. Cindi, I admire your determination. Clearly you are willing to do whatever it takes to help your daughter achieve her potential despite her mild memory-related disability. I agree 100% that everyone, whether they have a disability or not, deserves the chance to find fulfillment and happiness.

Even though faced by challenges relating to both her brain injury and life circumstances, she seems to have the right
attitude, the desire for something more out of life:
I want to do more for myself. I want to know what there is out there for me.
- Heather Lutton
If I could offer one piece of advice, it would be for Heather to start writing in a journal. Keeping a journal is a way to essentially transfer information from short-term memory to a hard copy book for later review.

You mentioned in the article that Heather has some trouble recalling daily events. A journal is the perfect place to record the details of daily life that are so easily forgotten (and not just by people with memory loss).

Now this is only a suggestion, and I don't know if it will work for her, but one approach would be for her to carry the journal everywhere she goes. Perhaps she could keep it in her purse. Immediately following events or experiences, she could find a quiet place where she could open her journal and write an outline of what had just occurred, who was there, and so on.

Then, in the evening, Heather could re-read what she had written during the day, as a way to jog her memory of the day's events and help put as many details as possible into long-term memory.

She could also re-read entries from previous days, as far back as she cared to. Through this review, memories written on paper while fresh could help strengthen the actual memories in her mind later.

Keeping a journal might be a challenge at first depending on how much of an experience she instantly forgets. But getting her recollections, such as they may be, onto paper (together with re-reading earlier entries), could, I suspect, help tie up loose ends and perhaps set her on the road to weaving a more complete set of episodic memories.

I wish you both the very best of luck going forward, and I'll keep you in my thoughts and prayers. I'm sure the visitors to my site who read this page will do likewise.

Best regards,
This is information only. It is not medical advice, diagnosis, or treatment.

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May 09, 2013
Courage & Inspiration
by: Anonymous

Reading this article is an amazing story ...A mother's love for a daughter that is not just a survivor but also an inspiration to others that anything is possible to over come ... my heart goes out to both of them for having faith and her daughter will over come obstacles ...True friends and family and love is a bond that every one needs in there life life to the fullest ...treasure the goodness and ask God to give you strength ...

Apr 08, 2012
Advice for your daughter in regards to memory loss
by: Gweneviere

I had a brain tumor and stroke and also suffer from short term memory loss. I would like to offer some suggestions for your daughter. It takes time to learn how to function without a memory, but once you have some standard practices in place, life is much easier for the memory impaired.

1. Get Neuropsych Testing done. The Neuropsych Testing will pinpoint exactly where her strengths and weaknesses are, which will help get her the right cognitive rehabilitation. Her doctor can write a prescription for her and recommend a place to have it done.

2. Once she has the Neuropsych Test Results, she can get into private cognitive rehabilitation. The doctor who oversees your daughter's case (for me it was my Neurologist) can likely give her some recommendations on where to get the cognitive rehab. I live in New York City and was able to go to Rusk Institute which was great.

3. Have your daughter use memory tools. Some suggestions are:

- Keep a journal. Write in it 3 times a day. Set alarms on a phone or watch as a reminder to journal or she will likely forget. My journal helps me so much. I can read about what I've been doing, friends I've spent time with, etc. It helps me feel much more connected to my life.

- Keep a digital camera on her at all times. She can take photos of experiences she has during her day to remind her of what she's been doing, and to help her feel more connected to her life.

- Keep a monthly whiteboard calendar in the kitchen or elsewhere in the house where it will be seen often. Keep all appointments (medical and personal) on this.

- Get a pack of Index Cards. Write a daily schedule on it for her to keep in her pocket. She should schedule specific times for each activity she does and mark off each task as she does it.

- Get into a support group. Her doctor should be able to lead her to a listing of some. Other options would be contacting a hospital for a list of support groups. Support groups have really helped me. Regardless of how much love and support friends and family can give, there is something comforting in knowing someone who has traveled a similar road to you.

Good luck to your daughter. I'm glad she has you looking out for her.


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