Mike B

Thanks for responding so promptly Michael. My reading was, one of the Jewelfish study prerequisites included prior treatment by one of the SMA drugs specified. Since Zolgensma is a one time treatment I believe those individuals previously treated with Zolgensma, now enrolled in Jewelfish would be considered as receiving combination therapy? I…[Read more]

I am curious as to what you found out Michael? It would at least be a “combination trial” for those individuals that were previously treated with Zolgensma, right?

I tried Gabapentin in the late 1990’s when some medical professionals opined it might be beneficial for SMA patients. There was a clinical trial. I experienced a strong drunken/dizziness side effect when I first started taking it but there were some overall positive effects also. I believe each person’s body chemistry is a little different so you…[Read more]

Good column Brianna, I checked out SMA My Way after reading it. There seems like some really good content on the site, but the contributor voices all seem like white people in roughly the same age group (20’s). I guess I’d suggest some more diverse voices?

I believe there is a current clinical trial with 174 participants that is studying this combination therapy: NCT03032172

If you liked 2020 Oscar Best Picture winner Parasite, check out the South Korean film ‘Burning’ which is available on Netflix.

i recently read Margaret Atwood’s The Handmaid’s Tale which has been on my to-read pile for years, along with the sequel The Testaments. Both books provided ample escape from the somewhat surreal daily life we’re a…[Read more]

Ignorant comments like those sound like people just wanting to talk about their own medical condition, as they make your circumstance about them. Sure makes me appreciate a genuine nice nod or smile.

Typically Medicare requires a Face to Face evaluation with your doctor to substantiate the need for a power chair as well as an evaluation from a PT/OT that the doctor needs to sign off on also. The F2F evaluation can be quite extensive and doctors grow frustrated by the paperwork, as in the past they used to be able to write a simple letter of…[Read more]

While there is much negativity and divisiveness in the news and our daily lives, for me the SMA conferences display and bring out the positives and best of humanity. A unifying collective spirit towards common goals is something I find uplifting. I was hesitant to attend my first conference back in 2015, but now have attended 3 of the last 4 and…[Read more]

Great topic Kevin. I’ve found having activities and events that I enjoy on my calendar helps motivate me to get through the daily grind. For me that’s usually having a music concert or live sporting event to look forward to on my calendar.

I ended up liking Laughing at My Nightmare much more than I thought I would. Shane’s humor and attitude were refreshing and I’m glad find out that his story has resonated with a broader audience. The funniest and favorite parts for me were the snippets of conversation between Shane and his brother. Several years ago (probably when he was finishing…[Read more]

Great video DeAnn. I’ll chime back in after I see the film. Seeing you deal with the snow and cold brought back experiences I certainly don’t miss!

Great article Kevin. Glad to read some positives about The Upside and I look forward to seeing it soon. I was wondering how people thought it compared to The Intouchables, which I found to be a fantastic movie when I saw it back in 2012.

I just ordered the book today and look forward to joining the discussion.

Patrick had some great advice above. I made the move from Michigan to Florida about 20 years ago and it took at least 18 months of planning and logistics to make it happen. I aimed for moving to cities where there was a university, as they seemed to trend towards broader healthcare services and better public accessibility. I also found that…[Read more]

I watched this film several months ago and thought it was solid and well acted, but perhaps a little overly ambitious in the number of topics it encompasses. Certainly there were many relatable issues; from running off a curb to roommate and caregiver problems to relationships and earning a living while disabled.

Thanks DeAnn, that site looks great! I’m going to look into getting my thermostat and window blinds voice activated as well.