adozi
Distinguished member
- Joined
- Dec 28, 2011
- Messages
- 233
- Reason
- PALS
- Diagnosis
- 03/2012
- Country
- US
- State
- KY
- City
- Louisville
I think this warrants its own post. Hope it helps people!
"Dealing with any chronic or terminal illness is challenging for anyone. It's OK to not be OK with it," said Kraunelis. "The hand that’s dealt to us isn’t always fair. But how we play that hand is within our control. We can choose to make things better or worse depending on how we think about them. Our thoughts are powerful and have a tremendous impact on the way we feel and communicate, so learning to manage them effectively can help make the journey through ALS a little less distressing."
Recognize that knowledge can be a double-edged sword. Some recently-diagnosed people will find information about ALS to be comforting, as it will stop them from wondering about the “unknowns.” Others will find excessive information overwhelming and upsetting. Joe suggested that people keep an ongoing list of their questions and concerns to discuss with their healthcare team whenever they're ready to learn more.
Know that ALS doesn't define you. "No one can ignore the fact that they now have ALS, but ALS doesn’t define anyone. When we allow any illness or disease to claim part of our identity, we're no longer in control of our own lives. It can be very empowering to know that you're still you, and you didn't instantly lose all of the wonderful qualities that define you. ALS doesn’t change that," Joe explained. Kraunelis agreed, adding, "Even when our bodies can't do what we want or need them to, that does not take away our value. You are more than your illness. You can still do many meaningful things such as inspire, love, care, pray, believe and hope, to name a few."
Go through the emotional stages. ALS typically means a loss of life as you once knew it, which is painful and can feel quite similar to the unexpected loss of a loved one. People with ALS (PALS) will typically go through the normal stages of grieving after receiving their diagnosis, including denial, anger, bargaining, depression, and finally, acceptance. Experiencing these emotions is nature’s way of promoting healing. Not everyone goes through every stage (or experiences them in the same order.)
Recognize and redefine. "It can be helpful for PALS to first recognize and acknowledge all the things they've been able to do. Realize your life has already been full of good experiences that can't be taken away by any diagnosis," Joe explained. "Redefining is harder. A person with ALS must redefine what gives their life meaning. If you've lost the ability to drive, it’s okay to mourn that loss, but dwelling on the loss is self-defeating. Think about why driving was such a meaningful part of your life and determine how you can fill that void with something else. Set realistic and manageable goals and accept that your goals will be different today than they were pre-diagnosis."
Surround yourself with positive things and people. Mobilize a team of loved ones who are good problem solvers and can explore possible resources for you. Utilize your support system. Family members, friends, co-workers and neighbors want to help; let them.
Focus on small steps. "While it's natural to jump ahead and start thinking about what the future holds, this can be overwhelming. Breaking things down into small steps and staying in the present can help keep intense negative emotions from taking over your mind. Practicing coping skills - such as mindfulness - can be a very effective way to manage emotions and stay mentally strong," Kraunelis explained.
Laugh when you can. There's obviously nothing funny about having a disease like ALS, but when we can experience humor and joy - even in small ways - it helps create balance and makes things more tolerable.
Have tough discussions early. While it can feel uncomfortable, talk to your loved ones about a variety of issues before your disease progresses. Many people are frightened to have these conversations, but it can actually be comforting for both parties when, for example, a daughter knows how her dad wants to be remembered. PALS want to live their lives with as much dignity as possible, while ensuring that they're authoring their own powerful legacies.
Keep your routine as "normal" as possible. There will come a time when this becomes more challenging and the routine will likely need to change. But, in general, the more familiar we can keep our routines, the less distress we experience.
Control what you can. Participate in - and have some control over - what you can. Much of the distress that comes along with having a debilitating illness is associated with the lack of control we feel over our bodies and situation. Be involved in your health care decisions and voice your opinion over treatment options, for instance.
Don't ignore your feelings. "Too many people try to ignore their depression or frustration, which is counterproductive and more damaging," said Joe. "Be open and honest about your feelings with people who are good listeners and have your best interests at heart." If physical activity is still a viable option, engage in it whenever possible. Write about your feelings in a journal, or put your writings in a box, which allows you to acknowledge the feelings, then "put them away," even for just that moment. Participate in online discussion forums or support groups to share your feelings and recognize that you're not alone.
(Lindsay R. Joe, Ed.D., LCMHC, based on New Hampshire's Seacoast & Kristen Kraunelis, RN,BC,LICSW, the Director of Quality Improvement and a psychotherapist at The Mental Health Center of Greater Manchester. Mental Health and ALS: Staying Mentally Strong After an ALS Diagnosis)
"Dealing with any chronic or terminal illness is challenging for anyone. It's OK to not be OK with it," said Kraunelis. "The hand that’s dealt to us isn’t always fair. But how we play that hand is within our control. We can choose to make things better or worse depending on how we think about them. Our thoughts are powerful and have a tremendous impact on the way we feel and communicate, so learning to manage them effectively can help make the journey through ALS a little less distressing."
Recognize that knowledge can be a double-edged sword. Some recently-diagnosed people will find information about ALS to be comforting, as it will stop them from wondering about the “unknowns.” Others will find excessive information overwhelming and upsetting. Joe suggested that people keep an ongoing list of their questions and concerns to discuss with their healthcare team whenever they're ready to learn more.
Know that ALS doesn't define you. "No one can ignore the fact that they now have ALS, but ALS doesn’t define anyone. When we allow any illness or disease to claim part of our identity, we're no longer in control of our own lives. It can be very empowering to know that you're still you, and you didn't instantly lose all of the wonderful qualities that define you. ALS doesn’t change that," Joe explained. Kraunelis agreed, adding, "Even when our bodies can't do what we want or need them to, that does not take away our value. You are more than your illness. You can still do many meaningful things such as inspire, love, care, pray, believe and hope, to name a few."
Go through the emotional stages. ALS typically means a loss of life as you once knew it, which is painful and can feel quite similar to the unexpected loss of a loved one. People with ALS (PALS) will typically go through the normal stages of grieving after receiving their diagnosis, including denial, anger, bargaining, depression, and finally, acceptance. Experiencing these emotions is nature’s way of promoting healing. Not everyone goes through every stage (or experiences them in the same order.)
Recognize and redefine. "It can be helpful for PALS to first recognize and acknowledge all the things they've been able to do. Realize your life has already been full of good experiences that can't be taken away by any diagnosis," Joe explained. "Redefining is harder. A person with ALS must redefine what gives their life meaning. If you've lost the ability to drive, it’s okay to mourn that loss, but dwelling on the loss is self-defeating. Think about why driving was such a meaningful part of your life and determine how you can fill that void with something else. Set realistic and manageable goals and accept that your goals will be different today than they were pre-diagnosis."
Surround yourself with positive things and people. Mobilize a team of loved ones who are good problem solvers and can explore possible resources for you. Utilize your support system. Family members, friends, co-workers and neighbors want to help; let them.
Focus on small steps. "While it's natural to jump ahead and start thinking about what the future holds, this can be overwhelming. Breaking things down into small steps and staying in the present can help keep intense negative emotions from taking over your mind. Practicing coping skills - such as mindfulness - can be a very effective way to manage emotions and stay mentally strong," Kraunelis explained.
Laugh when you can. There's obviously nothing funny about having a disease like ALS, but when we can experience humor and joy - even in small ways - it helps create balance and makes things more tolerable.
Have tough discussions early. While it can feel uncomfortable, talk to your loved ones about a variety of issues before your disease progresses. Many people are frightened to have these conversations, but it can actually be comforting for both parties when, for example, a daughter knows how her dad wants to be remembered. PALS want to live their lives with as much dignity as possible, while ensuring that they're authoring their own powerful legacies.
Keep your routine as "normal" as possible. There will come a time when this becomes more challenging and the routine will likely need to change. But, in general, the more familiar we can keep our routines, the less distress we experience.
Control what you can. Participate in - and have some control over - what you can. Much of the distress that comes along with having a debilitating illness is associated with the lack of control we feel over our bodies and situation. Be involved in your health care decisions and voice your opinion over treatment options, for instance.
Don't ignore your feelings. "Too many people try to ignore their depression or frustration, which is counterproductive and more damaging," said Joe. "Be open and honest about your feelings with people who are good listeners and have your best interests at heart." If physical activity is still a viable option, engage in it whenever possible. Write about your feelings in a journal, or put your writings in a box, which allows you to acknowledge the feelings, then "put them away," even for just that moment. Participate in online discussion forums or support groups to share your feelings and recognize that you're not alone.
(Lindsay R. Joe, Ed.D., LCMHC, based on New Hampshire's Seacoast & Kristen Kraunelis, RN,BC,LICSW, the Director of Quality Improvement and a psychotherapist at The Mental Health Center of Greater Manchester. Mental Health and ALS: Staying Mentally Strong After an ALS Diagnosis)
