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Sandra Mikush became a registered member
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Hello Sandra,
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a keyword in the forum’s search bar. If you have any questions, concerns, or even suggestions, just let me or Amanda (who shares co-moderator duties with me) know, and we will do our best to help you.
Please note that this forum’s purpose is to discuss issues related to ALS, not to provide diagnosis or medical advice.
Again, thank you for joining our forum – – We look forward to your comments and I look forward to chatting with you! Dagmar
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Thanks so much for this forum. I’ve also enjoyed your website and have shared your book with several family members. I feel like I’m drinking from a fire hose as I try to take in so much information in my first week post-diagnosis. My main questions are about how much to share and when about my diagnosis. My only outward sign of ALS is a weak left (non-dominant) hand, so it’s a bit strange to share beyond immediate family and my closest friends. Thanks for being such a good role model and resource!
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Hi Sandra, I understand your hesitancy in sharing your diagnosis with friends and family. I think back and can see my own hesitancy was from feeling embarrassed (how silly of me!), unsure of what to tell them, and not wanting their pity. Looking back, I realized that I needed to accept my diagnosis, it was up to me to show others I was doing OK and to teach them how they could help. I wrote several articles on these topic, hope they will be of help to you.
Closing the Gap Between Diagnosis and Acceptance
Here’s How to Help Friends When They Ask to Help You https://alsnewstoday.com/columns/2017/09/12/als-patients-heres-how-to-help-your-friends-help-you/
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Thanks. I saw those and found them helpful. My husband and I are working through sharing my diagnosis with our family and closest friends now. A cute story: My youngest son is high-functioning autistic, so I used the concept of ALS and MND as a “spectrum” similar to Aspergers/Autism when I explained my diagnosis. I told him I had very early stage ALS, and he said “you have high-functioning ALS!” Humor helps!
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What a thoughtful and unique way to explain your ALS to your son!
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Hello Sandra, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost my father, grandfather, both aunts, and a several cousins to ALS. My family has been volunteering for medical research for over a decade, and I believe we are getting closer to finding away to stop the progression of ALS.
Other members are pALS, caregivers and medical professionals. Please review the ongoing discussions and join in at anytime. You are also welcomed to post discussion topics, ask questions and respond to other members. The more we share, the better we all are in this community.
Please feel free to contact myself or Dagmar if you need any kind of assistance. Again, welcome to the forum!
Amanda-
Thank you for your welcome and for moderating this forum. I’m so sorry that your family has such a history with ALS and am grateful for your volunteering for research. We thought my father had sporadic ALS, but now I’ve begun the genetic testing and my siblings and children are concerned about what this may mean. When I get my results, I may reach out for more advice about next steps. Thanks so much.
Sandra
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