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Tagged: ALS, Caregivers, diagnosis, fALS, newly diagnosed
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What do newly diagnosed ALS patients want to know?
Posted by Dagmar on January 30, 2024 at 1:01 amAs a newly diagnosed ALS patient, what are the top three questions you have right now?
What is on your mind, and would like to have answers to?
Amanda replied 2 months, 2 weeks ago 3 Members · 3 Replies -
3 Replies
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When I was newly diagnosed my top 3 questions were:
– What is ALS?– How did I get it”
– What is the cure?
….now 14 years later, I’m still waiting for the answers! But, seriously, what are YOUR questions, and how can we help you?
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Hi Ginny,
First, I wanted to respond to some of you questions. I also wanted to make sure my statistics were accurate so I did a web search and below the next paragraph is the information I found.
Secondly, it is likely that one of your doctors or another member of your care team has already discussed this with you, but just in case I wanted to mention that we all grieve when we are diagnosed with an illness like ALS. The grieving process and Grief Cycle in nonlinear and we move in and out of the different phases. The Grief Cycle includes Anger, Barginin, Depression and Acceptance. Each pALS has a uniquely different experience and it depends on how their mental health is, what kind of support they have and how ALS is affecting them. We lose the use of different muscles and how that limits us not only impacts our physical health, but also our mental health. We need to focus on the positive and on what we can still do. I know that is hard to hear, at least it is for most of us at times. Saying, “Stay Positive!” to someone with ALS often sounds condescending and insensitive. Allow yourself to move through each phase, but try not to get stuck. If you have the inclination, I strongly encourage you to talk to a counselor, psychologist, or psychiatrist about your illness and how you are feeling. They may have some exercises or suggestions that may be helpful. Below is some explanation about the Grieving Cycle for pALS.
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Anger:
Frustration and rage directed at oneself, the situation, or even healthcare providers due to the loss of control and the progressive nature of the disease.
Bargaining:
Attempting to make deals or promises to change the reality of the diagnosis, often accompanied by “what if” thinking.
Depression:
Feeling overwhelmed by sadness, hopelessness, and a loss of purpose as the physical limitations become more apparent.
Acceptance:
Gradually coming to terms with the diagnosis, finding ways to live a meaningful life despite the challenges, and focusing on quality of life.
“According to most medical sources, around <mark>5-10%</mark> of ALS cases are considered hereditary, meaning they are familial and caused by a genetic mutation passed down through families, while the remaining 90-95% are considered sporadic (not inherited).
There is no cure for Amyotrophic Lateral Sclerosis (ALS), but there are treatments that can help manage symptoms and slow the disease’s progression:
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- Medications: Some FDA-approved medications that may help include:<ul jscontroller=”M2ABbc” jsaction=”jZtoLb:SaHfyb” data-hveid=”CDYQAQ” data-ved=”2ahUKEwiGut71kYmKAxWTVTABHcvAM8EQm_YKegQINhAB”>
- Riluzole: An oral medication that may slow the progression of ALS by reducing glutamate levels
- Edaravone: An antioxidant that may slow functional decline in some patients
- Sodium phenylbutyrate/taurursodiol: An oral medication that may prevent nerve cell death
- Tofersen: A spinal injection for patients with a mutation in the SOD1 gene
- Physical therapy: Can help muscles work better and improve general health
- Speech therapy: Can help people who have difficulty speaking
- Nutritional counseling: Can help patients eat healthy meals and avoid foods that are hard to swallow
- Breathing support: Noninvasive ventilation (NIV) can make breathing more comfortable
- Palliative care: Can enhance the quality of life for patients and their families
- Psychotherapy: Can help with anxiety and depression”
Here are some resources that may be helpful.
https://alsnewstoday.com/columns/5-types-grief-als/
https://www.als.org/blog/grief-loss-exploring-emotional-impacts-als
https://www.iamals.org/resources/als-and-loss/
Ginny, I hope some of this information is helpful. If you want to chat, please know that you are welcomed to message me. Sometimes it is hard to express what we are feeling to non-pALS. We are experiencing things no one can understand unless they are in a similar situation. They want to help “fix” the “problem,” understandably. We know that they can’t, and sometimes we just need to express ourselves in a safe environment. If you can’t reach me on ALS News Today, I’d be happy to share my personal email address. I can also be found on facebook, Amanda Ann Sifford.
Sincerely,
Amanda
alsnewstoday.com
Identifying 5 Types of Grief That Accompany ALS – ALS News Today
Columnist Kristin Neva delves into the various types of grief she's experienced due to the progression of her husband's ALS.
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