Kathy stitz
Forum Replies Created
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Thanks for your post, Marianne.
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Another thing to consider is the type of ALS that you have. Most people have limb-onset which tends to progress slower than bulbar-onset.  Bulbar-onset tends to be more aggressive and progress faster. In my opinion, it is worse to have bulbar-onset since it affects your eating and speaking fairly quickly and often requires getting a feeding tube.  Like Dr.Bedlack said, though, there are a lot of variations and it’s difficult to predict how long someone will live with ALS. It’s just such a sad and devastating condition to be diagnosed with and causes a great deal of suffering.  It’s really disappointing that there are no effective treatments and no cure for ALS.
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Congratulations Lisa and best wishes!
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Thanks so much, Duane.
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Gunnar, was your question: What is an AFO?
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Lisa, thank you for the information and for your suggestions.
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Thank you for this information Dustin.  Best wishes to you.
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Amanda, I am so sorry to hear this and I will be thinking of you during this difficult time.
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Thanks so much, Fran.
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Do all pALS need to make the decision at some point of whether or not to have this done?
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Amanda and Dagmar, thank you for all that you do to help and support pALS and their caregivers!
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Best wishes to you Carol. I hope you get answers about what is causing your symptoms and that you can get treatment and feel better soon.
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Hi Maya,
My name is Kathy and I was diagnosed with ALS about a year and a half ago. I am 45 years old. For me, it has been like a nightmare. I wish I could just wake up one day like this never happened.  I have had a lot of difficulty with coping with this diagnosis.  I have been depressed and anxious and I am afraid of dying.  A lot of my symptoms have been getting worse now so this has been very upsetting for me. I can’t really speak anymore and I feel so embarrassed about this. Last year in June, I had to get a feeding tube. I am mentally and physically exhausted. I grieve for all that has been lost because of this horrible condition.
This community has been wonderful, though. I have greatly appreciated being able to communicate with others who understand what this experience is like. The moderators, Amanda and Dagmar, are always there to offer help, support, advice, and encouragement.  Many of the members have already given you great advice that I agree with wholeheartedly. I would just add to try to do things you enjoy and focus on what you are still able to do. Happy New Year to all of you and I hope there’s a cure for ALS in 2022!
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Marianne, best wishes to you and your husband.
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Thank you for your responses and Happy Thanksgiving to all of you.
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I will ask about palliative care and thank you so much for your help.
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Thank you for your response and those are great suggestions!
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Janice, thanks so much for your response.  I’m glad that the supplements and powders are helping you to feel better. Best wishes.
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Thank you so much for your response, Dagmar. I really appreciate it! Thank you for all that you do to help pALS and their caregivers.
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Janice, what supplements and powders do you take?
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Wow Richard! That’s quite an extensive list of information and resources.  Thank you so much for providing it. I’m sure it will be helpful to the new members. Welcome and please don’t hesitate to reach out for support! ALS is a devastating diagnosis and it can be a very isolating experience.  Know that you aren’t alone as you face this and we all want to help pALS and their loved ones and caregivers.
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Hi Jan,
I also have bulbar ALS and take Gabapentin for pain.
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It’s admirable that you care so much about your brother-in-law and want to help him as much as possible.  ALS can indeed be a very isolating experience. Does your brother-in-law have any family members or friends that text him or come to visit him? I agree with Dagmar that you could encourage him to join this forum in order to communicate with other ALS patients.  Here he will find other pALS who understand what he is going through and can offer support and encouragement.  These are people who still want to help others, even though they are suffering greatly themselves.
All of us pALS fear what our lives will be like in the future and fear death. There’s no cure for ALS and it has a poor prognosis.  Many pALS only live for a few years after being diagnosed.  I hope your brother-in-law will reach out for support because it’s so important to do so and I wish him all the best!
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Thank you for your response, Marianne.  I am so sorry for what you are going through.  It must be very difficult for you and for your husband and your family.  ALS is such a devastating condition and it’s horrible that there is no hope of getting better.  I had been hoping for a cure but that hope is fading, to be honest.  Best wishes.