Marilyn Martone's Blog, page 5
November 26, 2013
Happy Birthday Michelle
It’s almost 16 years since Michelle was hit by a car and suffered a traumatic brain injury. Although she has multiple disabilities, she has taught us the true meaning of love. She composed a song, “I am Surrounded by Love.” She is surrounded by love because even on her worst days she teaches us what love is all about. Happy Birthday darling daughter.
October 21, 2013
Family Friendly Work
For those of us who are caregivers, here’s a sign of hope.
http://www.clasp.org/issues/pages?type=work_life_and_job_quality&id=0043&goback=.gmr_1905451.gde_1905451_member_5798054778000924674#!
September 26, 2013
Nutrition and Disability
An interesting article in the Lancet on nutrition and disability.
http://www.thelancet.com/journals/langlo/article/PIIS2214-109X%2813%2970056-1/fulltext
August 5, 2013
CAREGIVING
CAREGIVING
August 5, 2013 by Marilyn Martone | Edit
The music from the local fire house’s annual outdoor party blasts from five blocks away. I imagine what it would be like to be there – talking, having a drink, and maybe even dancing. But I’m a caregiver and my daughter’s aide is on vacation this week. Besides I’d probably find it hard to go without my daughter because everyone else seems to have forgotten that she exists and I am her connection to the larger world.
Besides there’s too much to do. My husband is having surgery on his back this week and I need to take him to do his pre-op work on Tuesday and then spend all day Thursday with him at the hospital. I also need to take my daughter into the city on Wednesday to see her neurologist.
In a few hours my two young granddaughters are coming for dinner so my son, who is now raising the children by himself, can have some free time.
My husband also wants to know why I don’t spend more time with him and my friends are telling me that I need to take care of myself.
Just as I’m wondering who I should take care of first, my daughter gets a large gash in her knee as she is transferring into her wheel chair. Blood is gushing out all over. I rush her to the car and as I brace her legs for the transfer my white slacks get covered in blood.
Nine stitches and three hours later I return home. I’ve disappointed my granddaughters, my son, and my husband again. I clean up the blood, turn my daughter over to the evening aide who is not on vacation, listen to the music from the firehouse, and wonder if loving is always so fragmented and at times so lonely.
Posted in brain injury, caregiving, disability | Tagged Brain Injury, caregiving, disability, TBI | Leave a Comment
July 23, 2013
Mayo Clinic Scholarship
The Mayo Clinic is in the midst of sponsoring a scholarship for their Social Media Conference in October. I am one of the entrants and as far as I can tell the only one representing brain injury. If you would like to see me win please click on the link and vote for me by hitting the like button next to facebook. If you are not on facebook you can also vote by posting a comment. Spread the word on your web sites. Many thanks.
http://network.socialmedia.mayoclinic.org/discussion/marilyn-martone-patientcaregiver-scholarship-2013
July 4, 2013
VP Shunts and TBI
Most often when individuals have VP shunts to remove fluid from their brain, malfunction is indicated by cognitive deficits. CAT scans are used to determine this malfunction.
In Michelle’s case, however, she experienced a year of physical regression. CAT scans indicated that her shunt was functioning fine. Health-care professionals allocated her deficits to a progression of her initial brain injury. They treated the symptoms but were not searching for the cause. I was not satisfied with that explanation and continued to prod trying to discover what was causing her regression. She had been walking with a walker and now she could do no weight bearing. Her transfers were maximal assist and in many cases two people were needed to transfer her. If she went down on the floor it was almost impossible to get her up because she was dead weight.
Out of frustration I took her into NYC to see a neurosurgeon who specializes in shunts. There we discovered that her shunt was fractured in her pelvic area. It was repaired in May. Since surgery she is doing weight bearing again although she still has a long way to go to get back to where she was. It took us a year to have her condition properly diagnosed and I can’t help but wonder what condition she would be in now if her shunt had been repaired much earlier. I also wonder how much discrimination played a role in her care. The underlying attitude on the part of health-care professionals was, she’s brain injured what do you expect. I expect the same level of care that anyone else would receive.
May 15, 2013
Michelle is Home
Michelle is home and doing well. Thank you everyone for your love and support.
May 14, 2013
Surgery is Over
Just talked to the neurosurgeon. Surgey went very well. They did not need to go into the brain and were able to repair the fractured part of the shunt, which was in the pelvic area. She will probably go home tomorrow. We are so blessed.
She’s in surgery.
She’s in surgery.
She’s in surgery.
She’s in surgery.
