SMA News Today Forums | diana-a | Activity https://smanewstoday.com/forums/members/dianaalb/activity/ Activity feed for diana-a. Thu, 16 Apr 2026 20:45:16 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 99485956677b3bc3a30504370dfa2ec1 diana-a replied to the discussion What is the most accessible place you have traveled to? in the forum Welcome Lounge https://smanewstoday.com/forums/forums/topic/what-is-the-most-accessible-place-you-have-traveled-to/#post-32949 Wed, 09 Jul 2025 18:57:26 -0500 Reply to What is the most accessible place you have traveled to?

This is great to hear!!! We’re headed to Spain next month and I’m a bit nervous about the travel. I was there many years ago when I was stronger and ambulatory. I use a walker now but will take my wheelchair too. We’re planning on renting a car. Any other towns, etc. that are nice to visit? Any must see places? We’re there for 2 weeks. …

Read more

]]> b84bfdac09ded9aeba55d8b0a9202a6a diana-a replied to the discussion Left side versus right side in the forum Welcome Lounge https://smanewstoday.com/forums/forums/topic/left-side-versus-right-side/#post-32813 Sun, 18 May 2025 18:59:49 -0500 Reply to Left side versus right side

I’m also type 3 with 4 copies of SMN2. I’m 63 yrs old and ambulatory using a walker. I’m right hand dominant and my right side has always been stronger. Going up the stairs to lifting heavy objects, etc. were always accomplished using my right side. My left side is getting weaker I feel by the day. My left hip is unreliable and I lose…

Read more

]]> a9529460195f8630e573cff2b721ce98 diana-a replied to the discussion I'm finally at a point where I might be able to get treated so... in the forum Treatment Questions and Stories https://smanewstoday.com/forums/forums/topic/im-finally-at-a-point-where-i-might-be-able-to-get-treated-so/#post-31891 Thu, 29 Feb 2024 22:24:52 -0600 Reply to I'm finally at a point where I might be able to get treated so...

I’ve been on Spinraza since September 2017 and have been quite pleased. I personally prefer dealing with my treatment every 4 months instead of daily. Fortuntely it is a painless and quick treatment for me. I’m in and out in 15 minutes from the procedure. It’s costly and fortunately my insurance covers it. It seems that every four months…

Read more

]]> c0771369ab439ecf4f20c8e566c5cb71 Diana A. changed their profile picture https://smanewstoday.com/forums/activity/p/16300/ Thu, 16 Mar 2023 19:58:51 -0500 0 67d6f05d1d56518c334388a490ce6509 diana-a replied to the discussion Testing, testing, are you here? in the forum Welcome Lounge https://smanewstoday.com/forums/forums/topic/testing-testing-are-you-here/#post-30733 Thu, 16 Mar 2023 19:33:52 -0500 Reply to Testing, testing, are you here?

All good here!  Looking forward to St. Patrick’s Day tomorrow.  Wear green  LOL

 

]]> 9929bb387e0b837b7515242163083704 diana-a replied to the discussion ???? Hello ???? in the forum Welcome Lounge https://smanewstoday.com/forums/forums/topic/%f0%9f%91%8b-hello-%f0%9f%98%8a/#post-29644 Thu, 16 Jun 2022 22:25:40 -0500 Reply to ???? Hello ????

Welcome Robin!  Look forward to meeting you someday. I’m 60 years old.  SMA 3  4 SMN2 copies.  I was diagnosed at a very young age. My older brother also had SMA and had been diagnosed with Duchenne MD.  It was in the early sixties and they did not know about SMA.  They knew to be observant of my walking, etc.  I’m still ambulatory but use a… Read more

]]> da5035a3c7250c5c34dd4d1a8fe89d86 diana-a replied to the discussion Treatment Updates in the forum Treatment Questions and Stories https://smanewstoday.com/forums/forums/topic/treatment-updates/#post-29638 Wed, 15 Jun 2022 12:50:57 -0500 Reply to Treatment Updates

I’ll be receiving my 18th dose of Spinraza 7/1.  Spinraza has been effective for me.  I wish that they would increase the dose for adults.  Prior to every dose, I start feeling weak and need my “juice”.  Once every 4 months is easier for me and my schedule than dealing with my treatment daily.  Fortunately I don’t experience any side effects… Read more

]]> 627d79aee3daca421e8e618dd5609395 diana-a replied to the discussion Spinraza Cycles in the forum Spinraza (nusinersen) https://smanewstoday.com/forums/forums/topic/spinraza-cycles/#post-29262 Mon, 21 Mar 2022 14:44:25 -0500 Reply to Spinraza Cycles

I had my 17th dose two weeks ago.  I’m very much an advocate for Spinraza. My strength skyrocketed when I started my loading doses.  Over the years, my strength has weakened some (probably due to age). I’m 60 years old and feel the slump before every maintenance dose.  I wish that Biogen would increase the dose for adults.  I’ve never… Read more

]]> b879861a412f59fe1d7690048a3425c0 diana-a became a registered member https://smanewstoday.com/forums/activity/p/14440/ Mon, 13 Dec 2021 03:29:05 -0600 1