Kathy stitz
Forum Replies Created
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Hi Susan,
Is the cost you listed for a one month’s supply or for longer than this? Thanks!
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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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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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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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Ok thanks Ginger. Take care.
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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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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 their caregivers.
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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 sitting there watching them. For me it feels embarrassing to not be able to speak. It makes me not want to be around others. I use pen and paper or text to speech on my phone to communicate but it’s still so awful to try to cope with these changes.
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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, grief, and frustration has been very difficult for me. Knowing that there is no cure for ALS and that I’ll never get better has been shocking and overwhelming. I grieve for all that has been lost. I am afraid of dying and the average life expectancy after diagnosis is only 2 to 5 years. I tend to worry about what the future holds instead of trying to enjoy each day. I feel so bad for all of us who are suffering every day and I wish I could make it better for all pALS.
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Andrea recently completed her marathon goal. Congratulations Andrea!
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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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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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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 something I have shared could help someone else. Maybe something one of you have shared could help me. Let’s all continue to support each other. Thanks so much.
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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 gets progressively worse over time. It’s so difficult to lose the functioning in your body ( the ability to eat, speak, move, and breathe). There is little that the doctors can do about it. As far as the issue of excess saliva, I have tried several treatments for that without success. Recently I tried Botox injections into the salivary glands. Next I’ll be trying radiation to the salivary glands. Iancu, best wishes to you and your husband and children.
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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 functioning in your body that occurs. There is depression and anxiety and fear about what the future will be like. There is no cure for ALS and little that the doctors can do about it. Sometimes you are unable to eat, speak, or walk and your breathing gets worse until most ALS patients pass away due to respiratory failure. This usually happens a few years after being diagnosed. Some forms of onset, like respiratory and bulbar, have a worse prognosis than limb-onset. I hope your symptoms can be treated, Mike, and that you will feel better soon. Best wishes.
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Thanks Dagmar!
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Hi John,
There is another federal program called Supplemental Security Income (SSI). This program helps those who are disabled but did not have enough work credits to qualify for SSDI. You get a payment each month with SSI and you also qualify to receive your state’s Medicaid. However, there are asset and income limitations to qualify for SSI. You can call the Social Security office where you live about this.
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Lisa, I’m so sorry for the loss of your sister.
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We will be thinking of you on Tuesday then! Let us know how it goes when you have time.
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Hi Lisa, We will be thinking of you on Wednesday for the filming! Hope everything goes well for you.
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Thank you so much Amanda! I will wait to hear more about this soon.
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Thank you for your suggestions, Jennifer, and best wishes to you.
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Marcie, I am so sorry about the loss of your daughter. How old was she when she was diagnosed with ALS?
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Kathleen, I understand your frustration and sometimes I feel angry at the doctors for not having a cure for ALS. I agree with Dagmar that all we can really do is try to take care of ourselves mentally and physically as best as possible. I’m not saying this is easy because it’s extremely challenging.