Recent content by ColleenMarie

Thank you so much for your kind and generous reply. I am trying to pace myself and save energy, to be careful. This week I got a cough assist and Trilogy machine and I meet with a surgeon for a feeding tube in September. Time goes by, things change. I think the psychological challenges are...

Aaron - I wonder too. When we think what we "discovered" just in the last 100 years here it does make you realize there is an infinite number of wonders out there. Knowing that is truly magical. So Incredible. My energy is really an issue so I am hoping this helps. From what I have read...

The information, thoughts and generosity in sharing your experiences truly keeps me going. I can only say I send you each my gratitude and love. Without this community, without you I would have been in more darkness. To take time to communicate when we all know time to be this precious is a...

I am having my visit with the ALS Clinic today and they feel like I need a cough assist machine and Trilogy. Are these items typically supported by insurance? To those who have Bulbar, I worry about how fast things progress once you are using trilogy, any exercises you found helped...

I am so very, very sorry.

I am here and I apologize for the lack of postings. I am so grateful to everyone here and people who are devoted to helping, sharing information. If not for this, I would be truly more bereft.

Thank you Nikki!!! I have signed up and will take your advice of not waiting, trying to find trials

Thank you for your response! My husband grew up surfing as a kid in California (we are both from California) and that was always his favorite thing in the world. We live in North Carolina now so the surfing is not easy to reach or good enough often. I am glad you still Kayak, stay positive...

Hello Everyone. I was offered genetic testing and that was sent out yesterday. I was told they have clinical trials, but that has not been discussed yet. I met with Dr. Li at Duke ALS Clinic. I see her again on April 5th. When I met with Dr. Cartwright at the Wake Forest Baptist...

Hello SuziQ - Thank you for the kind words. When did you first notice symptoms of speech changes? I realized I did not have any videos on my phone or anything with my speaking so I could hear myself when I think it begin for me to compare. People thought I was hitting pandemic wine too hard...

Thank you so much Nikki. I will be starting Riluzole probably tomorrow. I think voice banking is something I will work on right away and I agree, medication to cope with the shock, grief, anxiety is needed. Going in again today I saw other people at the clinic and it is distressing. People...

As if yesterday I was diagnosed with Bulbar ALS by the second ALS Specialist I saw and concluding all of my tests I have done for many months. If there is anyone out there who can share some of what they felt if they have Bulbar as things progressed. I was told that my speech would get worse...

These are wonderful suggestions. Your generosity in responding to me is truly a gift. I am going to ask about an anti-depressant next week from my GP. I know that fear, anxiety, stress is not doing me and my psyche much good right now! Once I have my bloodwork back, also Rizuole. I will try...

I would so appreciate any details you are willing to share. Sadly, most of what I have read is dire, quickly progressing. Because your husband had slow progression, how long did it take to get something of a prognosis? In the first year, were there enough dramatic changes to speech that you...

Hello Everyone. A bit of an update and thank you for your generous thoughts / advice. I did see an ALS specialist today which was a relief. They are sending out my bloodwork to check for other issues. The Doctor felt that I could have Bulbar ALS and it may be slightly slow in progression. I...