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Kathy stitz started the topic Thanksgiving 2022 in the forum Living With ALS 6 months, 2 weeks ago
For those of you who will be celebrating Thanksgiving in a few days: What are you thankful for this year? What will you be doing this Thanksgiving? Is there anything about Thanksgiving that is difficult or challenging for you?
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Kathy stitz replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 10 months ago
Hi Susan,
Is the cost you listed for a one month’s supply or for longer than this? Thanks!
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Kathy stitz replied to the topic Hospice for ALS in the forum Living With ALS 10 months, 1 week ago
Amanda, Thank you for your help. This is a difficult subject to think about and come to terms with but I guess it’s best to look into it in order to be prepared for the end-of-life. Thanks again.
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Kathy stitz replied to the topic In memory of Marianne Opilla in the forum In Loving Memory 10 months, 1 week ago
Amy, thank you so much for your post and I’m so sorry for the loss of your mother. ALS is such a horrible disease and causes so much suffering. We will miss Marianne!
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Kathy stitz replied to the topic In memory of Marianne Opilla in the forum In Loving Memory 10 months, 2 weeks ago
Thank you Dagmar for providing the link to Marianne’s obituary. I do not know how to do that so I appreciate your help. RIP Marianne
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Kathy stitz started the topic In memory of Marianne Opilla in the forum In Loving Memory 10 months, 2 weeks ago
Marianne Opilla passed away from ALS at age 67 on June 16, 2022 after an almost 3 year battle with this horrible disease. Marianne was featured in our ALS Awareness Month member spotlights in May 2021. She was an registered nurse for over 30 years and enjoyed being with her family and friends and being active. She was kind and caring and will…[Read more]
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Kathy stitz started the topic Hospice for ALS in the forum Living With ALS 10 months, 3 weeks ago
Is anyone receiving hospice care and has it been helpful for you? Thanks so much.
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Kathy stitz replied to the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 11 months, 4 weeks ago
Ok thanks Ginger. Take care.
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Kathy stitz replied to the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 11 months, 4 weeks ago
I have a few containers of high calorie Boost each day and water or Gatorade several times a day. Sometimes I try to eat some pudding or mashed potatoes.
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Kathy stitz replied to the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 12 months ago
Hi Ginger,
Thank you so much for your post and for your suggestions. I am not married. I live with my mother. That’s wonderful that you have a supportive husband and that you are doing activities that you enjoy. I was diagnosed with ALS 2 years ago and it is definitely life-changing. Take care and best wishes to you and to all pALS and th…[Read more]
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Kathy stitz replied to the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 12 months ago
I agree that not being able to eat or talk are also very big adjustments to have to make when living with this terrible disease. I also have a feeding tube and miss being able to eat. I have lost a lot of weight. It’s also hard to be at family gatherings or out with friends and everyone else is eating and enjoying their food and I’m just si…[Read more]
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Kathy stitz replied to the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 12 months ago
I was diagnosed with ALS 2 years ago, in June 2020. I am now 45 years old. For me there have been so many challenges and it’s hard to single out one thing as being my biggest challenge. I guess I would say emotionally with accepting this diagnosis and dealing with all of the feelings that result from it like depression, anxiety, anger, gr…[Read more]
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Kathy stitz replied to the topic ALS on national TV! in the forum ALS Awareness Month 1 year ago
Andrea recently completed her marathon goal. Congratulations Andrea!
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Kathy stitz replied to the topic A cure and hope for ALS (also wanting to know about treating excess saliva) in the forum A Forum for ALS Caregivers 1 year ago
How is the care for ALS different in countries outside the United States? Is that common that they don’t have ALS clinics or ALS Associations and it’s difficult to get any help?
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Kathy stitz replied to the topic “the luckiest man on the face of the earth.” in the forum Living With ALS 1 year ago
That’s true, Richard. Many people don’t even know what ALS is. Unfortunately people usually don’t focus on caring about or supporting a medical condition unless it impacts them personally where they have it or a family member or friend have it or have passed away from it.
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Kathy stitz replied to the topic A cure and hope for ALS (also wanting to know about treating excess saliva) in the forum A Forum for ALS Caregivers 1 year ago
Jim, doctors are familiar with Scopolamine patches. I had tried them without success. I’m happy to hear that the Scopolamine patches worked well for you. However, it just depends. What works for one pALS might not work for another pALS. It’s still important to share ideas and information about what has helped or not helped. Maybe somet…[Read more]
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Kathy stitz replied to the topic A cure and hope for ALS (also wanting to know about treating excess saliva) in the forum A Forum for ALS Caregivers 1 year ago
Unfortunately there won’t be a cure in time for any of us who have ALS now to benefit from it. This has often made me angry. I’m so sorry that your husband has ALS and that you are afraid of losing him. We all have the fear of losing our lives to this horrible condition. At some point that will happen since there is no cure for ALS and it get…[Read more]
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Susan and
Kathy stitz are now friends 1 year, 1 month ago
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Kathy stitz replied to the topic Long Journey in the forum Diagnosis Information and General Questions 1 year, 1 month ago
I agree with the advice that has been given above but would also like to add that I sincerely hope you don’t have ALS. In my opinion, the hardest part is actually being diagnosed with this horrible condition and your life after that is never the same. You know you’ll never get better and you’re totally aware of the progressive loss of fu…[Read more]
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Kathy stitz replied to the topic Applying for disability and medicare in the forum Living With ALS 1 year, 1 month ago
Thanks Dagmar!
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Great discussion topic Kathy! I am grateful for the opportunity to get to know each of our forum members. I grateful that we have this forum that allows us to support each other and share ideas. I am grateful that I am able to participate in research to help find a treatment and possibly a cure for ALS. I am grateful for each of you allowing me…[Read more]