This book recommendation came around again to me recently and I thought I'd pass along the title here. The recommended book is:
"AfterShock: What To Do When The Doctor Gives You - Or Someone You Love - a Devastating Diagnosis"
by Jessie Gruman, PhD
$12 new or $1 used on amazon.com
On Friday, someone on an online MSA support group noted that Dr. Gruman was on the Martha Stewart show on Friday 3/27. I dug around on marthastewart.com but couldn't find any segments from that Friday show available online. (Maybe the segment with Dr. Gruman will be posted later.) The Martha Stewart website did have some additional info on "Dealing with a Devastating Medical Diagnosis":
"What would you do if you were diagnosed with a life-threatening illness? How would you handle this news? While shock, fear, and even hysteria might be normal reactions, it's helpful to have a guide for what's often a very tumultuous road ahead.
When you're given the news that you have cancer, HIV, or another serious diagnosis, it may feel as if your world has shattered and all of your plans for the future have vanished in a flash. You feel fear, despair, anger, sadness -- often all at once. It's understandable; a serious diagnosis is a crisis, and you should treat it as one. Don't force yourself to go to work or make big decisions while you're really upset. Give yourself time to pull it together: Spend time with loved ones; don't forget to eat; nap if you can; cry if you feel like it. There are no rewards for being tough. It's a tribute to human resilience that as you learn more and adjust to the shock, you'll find you regain some focus and are able to take the important next steps.
Finding a good doctor is really important -- begin by looking for a specialist who has extensive experience treating the exact disease you have. Finding that person can be a puzzle. There are many referral sources, and none of them will tell you everything you need to know. The tried and true way is to ask a physician you know and like to refer you to another physician that he or she has worked with before. ...
Often, friends, family members, and co-workers don't know how to respond. They should begin by acknowledging the difficult situation. People say they're uncomfortable raising the topic with someone who is sick and that they don't want to remind the sick person of it or make them cry, but saying nothing is far more damaging. Say this: "I hear you've had some bad news. I'm so very sorry. I hope everything goes OK." It means so much.
Also, don't talk about a friend or family member's illness without his or her permission, even to other family members. Ask what information can be shared and with whom. And then listen -- many people with a serious illness swing between hope and fear.
When it comes to health care, you have to force yourself to act like a consumer. Things have changed a lot in health care in the past decade. Advances in surgery and drugs and diagnostics mean it's now possible to live long and well with diseases that were a death sentence as recently as 10 years ago. But we will only benefit from these advances if we are involved. We have to decide which doctors to visit, get the tests, take the pills, and seek help when we can't manage on our own. Patients have a critical role in the success of our health care."
http://www.marthastewart.com/article/de ... ewart-show
There's a list of online resources available.
This page on Dr. Gruman's website gives a great description of the book:
http://www.aftershockbook.com/book_inde ... troduction
Below is an email I sent out in June '07 to the local support group in which a social worker recommended "AfterShock" and gave some additional ideas for self management of long-term conditions.
Date: Mon, 18 Jun 2007 17:34:47 -0700
From: Robin Riddle <email@example.com>
Subject: "Self Mgmt of Long-term Conditions" (Meeting Notes)
I attended the Palo Alto Parkinson's Disease support group meeting last week where I picked up one book suggestion and a few general suggestions that I thought I'd pass along. The speaker was Kate Lorig, Patient Education at Stanford Hospital. The topic was Self Management of Long Term Conditions.
Here's some general information on Stanford's workshops and programs to help people live with long-term health problems: http://patienteducation.stanford.edu/programs/
Some programs are meeting-based and others internet-based.
This particular support group is mixed with caregivers and those with Parkinson's Disease. The speaker asked those with PD "what are the biggest challenges of living with PD?" and, for the caregivers, "what are the biggest challenges of living with someone who has PD?" Then the group voted on the top challenges, which were:
* living with ever-diminishing hopes
* sense of loss
* comparing how things used to be ("the good ole days") to how things are now
* balance/coordination/muscle weakness
On the psychological issues of ever-diminishing hopes and a sense of loss, the speaker said that once you have a chronic condition, death is a reality. She highly recommends a new book called "After Shock" by Dr. Jessie Gruman. (You can find info on this book at http://www.aftershockbook.com/
. You might listen to some interviews with Dr. Gruman before purchasing the book.) None of your family and friends know how to deal with the "new you."
The speaker recommends planning at least one thing every day that the patient and caregiver can still enjoy -- such as having an ice cream cone, watching the news, or travelling. She thinks it would be best to have several small things every day planned.
She emphasized that it's the patient's job to tell other people exactly what they can do to help. Again, she thinks that having something small planned is worthwhile, such as telling someone "you can invite me to a movie once a month."
The speaker believes that doing volunteer work is useful: "helping others will help you." A meeting attendee recommended the website dosomething.org for volunteer activities of any time duration.
The speaker says that most people with chronic conditions and most people caregiving for those with chronic conditions are depressed -- some sub-clinically (ie, not needing therapy) and some clinically. She recommends that everyone have a specific thing to do or think about if they perceive they are having negative thoughts. A specific thing to do might include going to the movies, exercising, or baking. A specific thing to think about might include polar bears or penguins. (These were her examples!)
The speaker addressed the challenge of balance/coordination/muscle weakness by saying that these issues can be addressed through exercise. She recommended that everyone with a chronic health problem get exercise that doesn't hurt. In particular she likes tai chi, and recommends the tai chi tapes of Paul Lam (see taichiproductions.com) and Jon Kabat-Zinn. JKZ also has mindfulness training tapes.
If you fall, don't ask someone to lift you as they probably don't know what they are doing and will hurt themselves or you. Instruct any helper to get others to help, particularly others who are trained in helping get people up off the floor.
She said that everyone using a cane, walker, or wheelchair needed lessons on using these tools properly.