Sunday, May 17, 2009
Older Americans Month, May 2009
Tuesday, April 14, 2009
A different view of Alzheimer's
Wednesday, March 25, 2009
Thank you but no thank you: Managing information and advice during a critical illness
When I felt that I had enough information to make informed medical decisions for myself, it became easier to deal with unsolicited advice. I discovered that the reason people gave unsolicited advice was either because they were trying to help me or help themselves feel less helpless. I learned that it was not my duty to listen to someone’s advice, regardless of whether the motivation was altruistic or fear based. Once I understood that, I was able to thank people for their caring before they launched into unsolicited advice giving. I often reassured them that I was under the best care possible. Controlling the medical information coming my way helped me keep my level of distress at a minimum. Sometimes, stopping a conversation before advice giving began, made room for other, more valuable, kinds of caring and support to take place. What I needed most wasn’t information; I needed to speak truthfully from the heart.
Sunday, March 15, 2009
Meningioma: meningo-what-now?
In early August, I was sitting at my computer at home when my left ankle went limp. As near as I could tell, my symptoms fit the description of someone having a stroke. I’d studied age related diseases so I was familiar with the simple “Act F.A.S.T.” test to do if you think someone is having a stroke. So I compared movement on both sides; I lifted my right leg and rotated my foot at the ankle and wiggled my toes. Then I tried to do the same with the left foot. I could barely raise my left leg and I could not “think” my foot or toes into moving. That was when I knew I was in trouble. With a stroke, brain cells are dying and the faster you can get help the better the chance you have of a good recovery. So I rolled my office chair to the phone and called 911. The paramedics arrived before I’d gotten off the phone. By the time they arrived I was already getting some movement back. I began to think I’d made a big deal out of nothing. Thank goodness the paramedics convinced me that it was better to go to the ER and see if I could find out what it was.
After questions, blood tests, neurological exams, two CT scans, and an MRI, it was determined that I had a Meningioma brain tumor, which is usually a benign, very slow-growing tumor of the brain or spine. They are quite common; 4% of cadavers have them, and those people never knew it. I have since learned that they usually are detected in people between the ages of 40- 60 and are found more often in women than in men.
Because meningiomas grow slowly, they may not produce symptoms for years, which was true in my case. The neurologist believed it had probably been forming for the last 10-20 years. My meningioma was pressing against my right side motor-control center, which is why I was exhibiting symptoms on my left side. My husband and I recalled a few past, very similar episodes of weakness in the left leg, but we’d always come up with more prosaic explanations for them (leg falling asleep, my being klutzy and my getting older).
Because of the slow growth of meningiomas, one treatment may be to monitor it. Whether or not to monitor the growth depends on the location and size (usually under 2 centimeters). Mine measured 4.3 centimeters. It was large enough to warrant surgical removal- the treatment most often used to treat meningiomas.
As someone who watches TV and loves the cinema, it was difficult to connect the MRI images I was being shown to myself. It was like watching an episode of Grey's Anatomy -- only I was the patient and McDreamy forgot to show up to deliver the news. Although everyone who dealt with me at the CPMC Emergency Rooom was fantastic: concerned about my comfort, safety and privacy, I simply could not take it all in. I don't think the news would have sunk in at all if it had not been for the manner in which the CPMC doctors delivered my diagnosis: straightforward, honest, compassionate, and in a gentle tone of voice. People thought I was pretty calm when I heard the news. I was calm; I suppose I was in shock. I was trying to accept and absorb the news.
(Next: Thank you but no thank you)
Thursday, March 5, 2009
Gerontechnology: Eldercare-at-home startup seeks beta testers
Should you have clients, friends or relatives you're caring for in the greater Bay Area who might benefit from this type of service, please contact Maham or Heather directly. Their contact information follows along with some information about their concept:
- make it safer
- (ex. install grab bars, handrails, better lighting, etc.)
- do maintenance that will prevent bigger problems down the road
- (ex. replace smoke detector batteries, fix leaky sinks, etc)
- set up technology to keep them connected to their family
- (ex. digital picture frames, phones with amplification, etc)
Again, this is a totally free service, and your family will get a customized strategy with specific recommendations for your unique home, situation, and health status. It can serve as a useful roadmap for planning to help your loved one stay in their home with a high quality of life.
Drop me an email if you are interested.
Thanks,
Maham
--
Maham Daher
Masters in Public Health & MBA
University of California, Berkeley
Haas School of Business
Cell: 617-319-6290
maham_daher@haas.berkeley.edu
(Next: Meningioma: The brain and other grey matters)
Sunday, March 1, 2009
The emerging uses of gerontechnology
A New York Times article, “Sensors Help Keep the Elderly Safe, and at Home” suggests that the use of technology can support aging in place (staying in ones home). The article describes a system (eNeighbor) that helps an older person live alone independently and provides protection if they have a health incident. The system consists of twelve different devices, including:
- a personal emergency call button that a person can push to get assistance,
- a camera,
- a telehealth device that can check on symptoms and measure vital signs in the home,
- sensors which identifies changes like if a refrigerator has been opened or closed, if medication has been taken, or if they have they gotten out of bed.
- Dissertation on the use of telehealth devices to support under-served medical regions.
- Link2Care - an internet site offering information on every facet of caregiving for dementia, care planning, decision-making, and consultation - free.
I’m not suggesting that technology is a substitute for social support. The benefits of having close, personal relationships is well documented. But if technology in someone’s home can improve their health outcomes and provide a safer environment (at a lower cost than assisted living), I'm all for trying it. And giving caregivers a tool that lightens their burden is an added bonus.
(Next: Berkeley grads seeking some Bay Area contacts to road-test their ideas for keeping seniors in their homes.)
Monday, February 23, 2009
Meningioma: Skillful means - getting support during critical illness
I just left the hospital after a visit with a dear friend. She has metastatic colorectal cancer and just had her liver resected (surgical removal of a part of the liver). What struck me most, about our visit, was her amazing spirit and her comment about how much she appreciated the support she’d received from friends and family.
Once more, I was reminded that the people in our lives can be a deep source of healing. Even though I know (on an intellectual level) that studies about the relationship between physical health and physical recovery show that emotional support is associated with better physical and psychological recovery outcomes and that emotional support reduces stress associated with the recovery from illness, there is nothing like being critically ill to bring the point home.
In my previous post in this series, I said that I learned how to interact with others, tell them about my illness and ask for support by watching a friend skillfully do these things for herself just a few weeks before my own diagnosis. Cynthia and I belong to a women’s sangha (a Buddhist group that supports each other). At a meeting in late July, she shared the news that masses were discovered on her ovaries two weeks prior and surgery was imminent. Hearing the news that someone I care about has just been diagnosed with a critical illness was devastating and frightening. What will I say that is adequate? What if I say the wrong thing? I’ve experienced times when I was so afraid of saying the wrong thing that I said nothing at all or tried to “act normal”. So my friend’s consideration of these things, from the beginning, was a great kindness. By gently and skillfully expressing her wishes for how she’d like to be supported during the days that would follow, she got the kind of support she needed and inadvertently taught me what to do when it was my turn to be faced with a critical illness.
First, Cynthia asked that we not share stories or medical information about ovarian cancer, good or bad. As a health care educator, she was very aware of the information that was out there. She said that for the moment she was fine. This did not mean she had not had “wobbly legs” from time to time, while she had been deciding what treatment path to take. She wanted us to support her with “just this”- i.e. not adding any of our own layers of reactions to this news on top of those she already carried… to let her have her own experience, to not try to fix it or take it away- just being present and being ourselves was enough. She let us know that she would not be informing members of her immediate family. Their proneness to excessive worry was too much for her. She wanted to wait until after the surgery when she knew what she was dealing with. She asked one of us to be with her at the hospital and to be the contact person through whom we could all get information about her status, need for visitors and so forth. This supported her but it also supported and connected her friends.
From my experience I know that a potential cancer diagnosis brings with it an incredible sense of powerlessness. Being able to determine some things for oneself, such as the type of support one wishes to have, is very empowering. Having asked for support we can take the next step into the unknown feeling a little less alone.
(Next: News Flash)