March 19, 2020 at 12:46 pm #14894NicolParticipant
My ALS symptoms started in Feb 2018, with a left foot drop. So I have limb onset ALS as diagnosed in Dec 2019. In the past several months, my speech and swallowing have declined significantly, where I cannot speak clearly and am having difficulty eating. My question is: Once these bulbar symptoms occur, does that mean I am in the end stages?
March 19, 2020 at 2:31 pm #14895Jonathan L MaddockParticipant
Oh, my….I certainly hope not or we’re both in the same place.
Nicol, I’m at work right now, so I can’t go into any length. I just want you to know that the fact that you can still eat and communicate verbally, albeit not the way you used to, says to me that you are not in an end stage.
I don’t know the definition of end stage, but I perceive this as needing help with everything you want/need to do.
Keep up your optimism. One day at a time.
March 19, 2020 at 2:59 pm #14896Lisa BonahoomParticipant
Mine started with Bulbar symptoms 3 years ago. Your doctor can advise you! Breathing is the issue. If your breathing is good, you are good! Lisa
March 19, 2020 at 3:34 pm #14898Jon CarlinParticipant
Everyone is different. My partner, for whom I was caregiver, lost strength in her hands first and was diagnosed around March 2017 with ALS. She took Radicava infusions for more than a year with hopes this would slow progression. She was 76 when diagnosed and did not want a feeding tube (recommended by her neurologist) or intubation. Today there are new developments all the time with the hope that one or more of these developments will slow down or reverse the disease. My partner’s disease progressed rapidly which does not occur with many ALS patients that we met at group sessions. Some patients were going strong after 10 years. Keep strong mentally and physically and use all available resources to slow disease progression. The cause of ALS may still be a mystery but treatment to slow and reverse muscle deterioration will happen just as sure as polio and other serious diseases were prevented years ago. Never give up but try to be at peace and stay confident. You have many friends that have hope and pray for each person with ALS.
March 19, 2020 at 4:26 pm #14899Mike MinardiParticipant
My wife started slurring her speech in the spring of 2018 with right hand and arm weakness. She was diagnosed with bulbar ALS at the end of Sept 2018. She can no longer speak or swallow, but she is still breathing on her own and we have gotten great support from the team at Mass General and the Sean M. Healey and AMG Center for ALS in Boston. She has been on an experimental treatment (RNS60) through the Healey Center expanded access program since June 2019. We know her condition is caused by a genetic mutation (c9) and we remain hopeful that one of the genetic therapies in the pipeline will become available and effective sooner rather than later. Wishing you all the best.
March 19, 2020 at 5:45 pm #14900Dagmar MunnKeymaster
I am where you are Nicol, and have been for about 7 years. I had foot drop, and 3 years or so later began to have swallowing and speech issues. Then, nothing else changed.
I wouldn’t get hung up on “stages” – – ALS doesn’t seem to be that linear. Just address the symptoms as they appear and find ways to adapt and…continue on. I’ve written a lot about how I’ve continued speaking by learning breathing and pronunciation techniques. I thicken my beverages and continue to eat normal foods. Posture, diaphragmatic breathing all are essential. I say: adapt, adapt, adapt 🙂
Hope these are of help 🙂
March 19, 2020 at 6:55 pm #14901NicolParticipant
Thank you all for your kind responses – it is helpful to hear from others in the trenches. My diagnosis journey was such a saga that I have only been to my ALS neurologist for the initial consultation after confirming the diagnosis. I was supposed to have my first clinic visit, where he has all the various therapists come in to see his ALS patients in one setting, next week. But they just called to cancel the clinic visit, in light of the corona virus battle. So, I haven’t been able to see any therapists yet. Thanks again for your encouragement!
March 19, 2020 at 8:39 pm #14902AmandaKeymaster
As you can see by the responses, the so called “stages” of ALS are not linear and everyone progress differently. My cousin lived over 16 years after her diagnoses. Just continue to work with your doctors, and communicate with other pALS to determine how you can live the healthiest life style possible. I would highly encourage you to read Dagmar’s column, Living Well with ALS. She has such a positive attitude and has wonderful suggestions and ideas. Please feel free to post any questions on the forum. We have a very supportive community and our members are willing to share information and experiences.
- This reply was modified 2 years, 8 months ago by Amanda.
March 19, 2020 at 9:31 pm #14905AnonymousInactive
Nicole, My speech problem started around 2011-12. I can still speak somewhat but it is difficult to understand especially in the evenings when I’m more tired. I don’t think anyone knows what your ‘stage’ is other than yourself. Neurologists can test you but they don’t really know for certain. They follow certain guidelines based on patient experiences. Just take it one day at a time and try to shift your focus to things other than ALS. That’s what I have doing and it worked for me for 13-14 years.
March 22, 2020 at 2:10 pm #14917Ronald James SpitlerParticipant
I’ve had ALS for nearly 3 years but was treated for Lyme until a year ago. My Bulbar started over 2 years ago and the team at Henry Ford Hospital in Detroit got right on it. First, a bi-pap machine assists breathing and saves energy…the best thing you can do. Nudexta got rid of the involuntary laugh/cry problrm. A speach therapist was great for training me how to eat,swallow, breathe and speak better. She also suggested a “Breather” to strenghten my lungs. My lung capacity is above average for my age( a spry 77). I’m holding my own for now. We’re “baracaded” in our home waiting for this crisis to pass.
March 23, 2020 at 5:13 pm #14927Dagmar MunnKeymaster
I heartily agree with you Kasper!
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