ALS News Today Forums | katy1985 | Activity https://alsnewstoday.com/forums/members/katy1985/activity/ Activity feed for katy1985. Tue, 14 Apr 2026 08:33:49 -0500 https://buddypress.org/?v=2.19.0 en-US 30 hourly 2 bf1e1b3d00f060bd3a6c1bcf9474af3c katy1985 replied to the discussion SPG302 EAP from Spinogenix in the forum ALS Progress https://alsnewstoday.com/forums/forums/topic/spg302-eap-from-spinogenix/#post-27108 Wed, 08 Apr 2026 16:20:26 -0500 Reply to SPG302 EAP from Spinogenix

Hi Randi, I just saw Dr Jenkins yesterday. I really like her. The communication is great. I feel like they connect more with the individual there. Chow has also been great facilitating things for me. Technically I live in California but I spend at least half my time in Mexico. They help me work with that while being in their program. I did…

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]]> e7aa88d73a0a858e96370b5356016f81 katy1985 replied to the discussion SPG302 EAP from Spinogenix in the forum ALS Progress https://alsnewstoday.com/forums/forums/topic/spg302-eap-from-spinogenix/#post-27098 Tue, 31 Mar 2026 21:13:09 -0500 Reply to SPG302 EAP from Spinogenix

I have taken it for 3 wks through the EAP. Too early to tell.. I am a slow progressor. UMNd ALs so we will see. Dr Rowe in Australia thought possible slowing in slow progressors but no affects on fast progressors. I have not had any side affects .

]]> a175c6f313401e5dbe6123a914c4aef8 katy1985 replied to the discussion SPG302 EAP from Spinogenix in the forum ALS Progress https://alsnewstoday.com/forums/forums/topic/spg302-eap-from-spinogenix/#post-27002 Fri, 06 Feb 2026 21:29:52 -0600 Reply to SPG302 EAP from Spinogenix

Thank you for posting your experience Monica.

]]> 1e6005e969e18022fedd9058d12430e7 katy1985 replied to the discussion SPG302 EAP from Spinogenix in the forum ALS Progress https://alsnewstoday.com/forums/forums/topic/spg302-eap-from-spinogenix/#post-26989 Fri, 30 Jan 2026 15:03:23 -0600 Reply to SPG302 EAP from Spinogenix

Thanks, if all goes well at the screening I am supposed to start the meds early March. We are working the timing around a long planned Europe trip in June. To keep me on schedule for the follow ups. I will keep in touch .

]]> 9218fb8cc651296afa9c700e1ea036e9 katy1985 replied to the discussion SPG302 EAP from Spinogenix in the forum ALS Progress https://alsnewstoday.com/forums/forums/topic/spg302-eap-from-spinogenix/#post-26979 Wed, 28 Jan 2026 14:26:24 -0600 Reply to SPG302 EAP from Spinogenix

I have an appt for a screening in Feb. I have read that Dr Rowe from the Australian trials was positive about results in slow progressors but said it did not work in fast progressors.

]]> 3d62b75d71c60b5fcebd4dba77dc5bc5 katy1985 replied to the discussion When did you first know you were a slow progressor? in the forum People with slow ALS progression https://alsnewstoday.com/forums/forums/topic/when-did-you-first-know-you-were-a-slow-progressor/#post-26841 Fri, 07 Nov 2025 16:07:09 -0600 Reply to When did you first know you were a slow progressor?

I was diagnosed dec 2023. I had very minor, intermittent slurring. No one believed me or could hear it but me.. everyone now says they thought it was just my Massachusetts accent. That was before covid. I was also flying from the west coast to Mass. frequently to help take care of my elderly, not well mom.. a lot of stress and not…

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]]> 8907553838234a66d946c83e34a3f01f katy1985 replied to the discussion Are you comfortable talking about how ALS is impacting your life? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/are-you-comfortable-talking-about-how-als-is-impacting-your-life/#post-26840 Fri, 07 Nov 2025 15:37:40 -0600 Reply to Are you comfortable talking about how ALS is impacting your life?

I don’t mind talking about it at all. Maybe because I worked in healthcare for 25+ yrs I am used to talking about our bodies and issues that come up. What has surprised me is how little people know about ALS. Even MDs, Rn, PAs and all the rest. I have a PA friend that is insistent that slow progressing ALS (thats me!) is the same as the other…

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]]> c3faf72667cda68831e99fb65e2ffe33 katy1985 replied to the discussion Slow Progressors may be a hope for a cure/treatment in the forum People with slow ALS progression https://alsnewstoday.com/forums/forums/topic/slow-progressors-may-a-hope-for-a-cure-treatment/#post-26711 Sat, 30 Aug 2025 02:11:23 -0500 Reply to Slow Progressors may be a hope for a cure/treatment

Thank you for posting this. My husband and I just finished watching. I have not introduced myself yet on this forum but I am a slow progressor. I have lost about 1 pt per yr at most since my Dx almost 2 yrs ago. My symptoms were finally consistent enough that someone besides me would notice or believe me 3 yrs ago. I check out the.…

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]]> 205ffa3b17e4da27fbde2af98e869d04 katy1985 became a registered member https://alsnewstoday.com/forums/activity/p/24653/ Mon, 17 Feb 2025 15:24:08 -0600 2