ALS News Today Forums » All Posts https://alsnewstoday.com/forums/forums/forum/boosting-our-voices/feed/ Fri, 24 May 2024 04:28:16 -0500 http://bbpress.org/?v=2.5.14-6684 en-US https://alsnewstoday.com/forums/forums/topic/acapela/#post-25523 <![CDATA[Acapela]]> https://alsnewstoday.com/forums/forums/topic/acapela/#post-25523 Mon, 20 May 2024 00:48:35 +0000 Patty I saved my voice on acapela.which app is easiest to use with it? I tried T D Talk. But I couldn’t find the phrases that I recorded on it.

]]> https://alsnewstoday.com/forums/forums/topic/practical-guide-to-als/#post-24855 <![CDATA[Reply To: Practical Guide to ALS]]> https://alsnewstoday.com/forums/forums/topic/practical-guide-to-als/#post-24855 Wed, 15 Nov 2023 20:59:59 +0000 Dagmar I compliment you on having a great resource and descriptions of shower chairs!

]]> https://alsnewstoday.com/forums/forums/topic/practical-guide-to-als/#post-24850 <![CDATA[Practical Guide to ALS]]> https://alsnewstoday.com/forums/forums/topic/practical-guide-to-als/#post-24850 Wed, 15 Nov 2023 10:44:37 +0000 fred-schreiber I wish to announce to the ALS community my website, “Practical Guide to ALS” at: https://guidetoals.com/.

This is a work in progress. There will be more entries to this website over the coming weeks as my editor readies them. It is free to access.

Our son, who passed away on 10.29.21 at age 42, wrote a book with his eye-gaze device, “Never Say Invisible” which is available on Amazon at https://www.amazon.com/Never-Say-Invisible-Memoir-Living/dp/195486101X. His book covers two topics: his ALS journey and the discrimination that the disabled encounter. He also created his own website, https://www.neversayinvisible.com/, which will be updated. The “Practical Guide to ALS” is based on the four years of experience caring for our son.

Currently, my website Practical Guide to ALS at https://guidetoals.com/ has the following entries:

https://guidetoals.com/head-and-neck-support/

https://guidetoals.com/shower-chairs/

https://guidetoals.com/our-sons-als-journey/

https://guidetoals.com/thoughts-on-causes-of-als/

https://guidetoals.com/patient-advocates/

https://guidetoals.com/doctors-you-should-visit/

https://guidetoals.com/als-and-the-medical-profession/

https://guidetoals.com/patient-lifts/

guidetoals.com

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]]> https://alsnewstoday.com/forums/forums/topic/is-there-anyone-like-me/#post-24645 <![CDATA[Reply To: Is there anyone like me?]]> https://alsnewstoday.com/forums/forums/topic/is-there-anyone-like-me/#post-24645 Thu, 21 Sep 2023 21:56:22 +0000 Eric Jensen Thank you Andrea for sharing. I am so sorry for your husband.

]]> https://alsnewstoday.com/forums/forums/topic/is-there-anyone-like-me/#post-24644 <![CDATA[Reply To: Is there anyone like me?]]> https://alsnewstoday.com/forums/forums/topic/is-there-anyone-like-me/#post-24644 Thu, 21 Sep 2023 20:33:39 +0000 Andrea McClain My husband has had a similar course as yours. His began with weakness in his right knee. In December ‘21. Over several months he developed foot drop. X-rays and CAT scans showed lumbar compression and he had a laminectomy. Shortly after surgery he went to the ER due to rapid heart rate and difficulty breathing. His troponin was very elevated. He ended up with a heart cath but all was normal. Within 2 weeks of surgery he developed fasciculations of both upper extremities. The neurologists dismissed my concerns that he could have ALS (I’m an RN with many years working in neuroscience). They reluctantly agreed to order an EMG of his legs which showed motor neuron disfunction but would not call it ALS. I made an appointment with a neurologist at Rush hospital in Chicago. Mayo Clinic confirmed the diagnosis a month later.

My husband is now confined to a power wheelchair. His decline has been rapid in both muscle function and respiratory decline. This disease is relentless. I feel so helpless to slow it down

]]> https://alsnewstoday.com/forums/forums/topic/is-there-anyone-like-me/#post-24643 <![CDATA[Is there anyone like me?]]> https://alsnewstoday.com/forums/forums/topic/is-there-anyone-like-me/#post-24643 Thu, 21 Sep 2023 17:27:30 +0000 Eric Jensen 2020, I had trouble walking and went to the ED. They diagnosed me with Rhabdomyolysis. CK was in the 500’s(not Rhabdo). MRI showed encroachment in my lumbar spine. I had fusion surgery of S1-L3 and this did not help my weakness. Right calf atrophied and I learned to live with a cane. 2022, I had weakness in my left leg. All my EMGs show possible Radiculopathy and/or motor neuron disease. My CK is now always 300-500 and my troponin levels are also always elevated. 5 neurologists all have different, subjective, neurological assessments. I was a body builder and have always been strong. Now, I am in a power wheelchair and both calves are very atrophied. Two neurologists have seen UMN dysfunction but the EMGs do not match my physical disabilities. I found another patient, in a forum, presenting the same as me. Is there anyone else like this? Help.

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