"Hope is a self-awareness,” said Ron Trasky, a licensed therapist with 36 years of experience in the mental health field and the facilitator of the MDA/ALS support groups in Denver and Colorado Springs, Colo. “It’s an inner understanding, an inner strength or force that allows an individual to move forward emotionally and physically.”
Without hope, the world would be an extremely dismal place, said Trasky. Whether you have ALS or are a caregiver for a relative with the disease, hope is what keeps you from giving up. This inner force tells you to keep persevering in the face of the life-threatening disease.
“The emotional side of this can really make or break a patient or a caregiver,” said Trasky, who does mental health counseling and research for the Veterans Administration and owns a private practice in which he works with couples, families, sex offenders and clients with obsessive/compulsive disorders. “You don’t want to lose hope in life, because once you lose hope you’re basically pretty much done. I think hope is what keeps us moving forward both as individuals and as a society.”
Here are some strategies for promoting hope in the face of the sadness, anger and uncertainties that come along with a diagnosis of ALS.
Acceptance is the first step in realizing hope, said Trasky. It’s an individual strength or understanding about what’s going to happen to you in the future.
|MDA’s ALS support groups allow people with ALS and their loved ones to share practical information and find emotional support.
“You have to get past the shock, past that grief that doesn’t give you hope,” he said. “Once you get into the acceptance of it and say 'I don’t have the ability to do this any more but I accept all my disabilities for what they are,' then you can move on in life.”
Sometimes, you accept that you have this life-threatening disease, while your caregiver is unable to find acceptance; or it may be the other way around. You can’t force somebody to the point of acceptance — it’s a process he or she has to go through. And you have to understand and accept that he or she may never accept the disease.
Communication is another way to build hope. Through MDA support groups, many individuals with ALS find hope and comfort by talking openly with others who are going through similar situations. In sharing experiences, group members give one another hope for a slow progression, possible treatments and cures and the strength to deal with challenges ahead.
It’s also healthy to laugh, cry, scream, swear and vent in any way you choose. It may help to journal the process of life and write down your thoughts, feelings, wishes, hopes and dreams. Trasky’s support group uses scrapbooking as a way for members to gather thoughts and feelings and reflect on their lives.
“I think talking about the disease is how hope is perpetuated in my group,” said Trasky, who says his group uses a lot of dark humor. “People look forward to coming to the next group so there’s a bit of hope there.”
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Arming yourself with knowledge is another way to promote hope. Trasky’s support groups often have doctors talking about the latest ALS research or medication regime. Learning about advances in research gives you comfort that your hopes aren’t unfounded.
Other experts offer hope as well. An occupational therapist may show you a safe way to transfer your husband into and out of his wheelchair, which gives you both hope for a safer future. Hope can be provided by your dietician when he or she suggests a feeding tube to improve your health.
Learn as much as you can. You may find that there’s a piece of equipment that will allow you to once again participate in your favorite hobby, providing hope for an improved life with ALS.
Besides learning about progress made in the fight against ALS, take an active role in fighting ALS. Taking part in MDA’s clinical trials helps initiate hope because you know that you’re doing everything possible to forward scientific research that can lead to treatments and a cure.
Most people hope that researchers will find a cure for ALS before they pass away. You can also find hope in knowing that, even if there’s not a cure in your lifetime, you’ll be instrumental in the development of a drug that will one day save the lives of many.
The same idea holds true for exercise or taking medication: Your active involvement in making yourself healthier can be a source of inner strength.
Some individuals find hope in spirituality. The feeling that someone or something is helping them get through life gives some people hope that everything will ultimately be okay. Whether they believe in heaven or some other kind of afterlife, spiritual people tend to envision a peaceful future without the pain and suffering of the physical world.
It’s important not to push your religious beliefs on others, however, said Trasky. Upsetting people diminishes hope.
When you receive a diagnosis of ALS, it’s natural to lose hope and have a difficult time moving forward emotionally. That’s why rebuilding hope is so important. You have to keep hope alive so that hope keeps you alive.