[alex-telenson]

Kevin – it’s funny you mention this.  I got my last dose about a week and a half ago and I feel great. Prior to that however – especially the few weeks leading up to it – I was feeling quite fatigued by things that otherwise hadn’t previously made me tired. I knew I had the shot coming up so I wasn’t sure if it was a sort of placebo. And I know the feeling of “having energy” is subjective and difficult to measure for clinicians, but every time I get a dose I feel like I have so much more energy for the next 3 or so months. It’s not as if I am getting stronger. I still can’t lift my arm very high, but I swear by the increase in energy, which in turn feeds forward and improves my mood which I know is not an effect of spinraza, but definitely a secondary downstream effect of having more energy. Additionally – and this point is critical – prior to the injections I had felt myself getting weaker over a time course of a year or so in that I lost the ability to do certain things I was able to do prior. I have not experienced that since getting the injection. If the natural history of our disease is to slowly decline, then halting any further progression – in my opinion – is by definition improving. Aka spinraza = big fan.

So in short, yes. I experience exactly what you are talking about.

[alex-telenson]

I am going! But I registered for the research portion, but there is definitely overlap.

[alex-telenson]

I would not personally do it, but I am fortunate enough to incur the costs. However, this is largely in part because I find the conference of such value that I actively budget to accommodate for what is essentially a vacation. Any medical reason or necessity to attend this conference is mitigated by simply speaking with a neurologist. While I completely understand that the expenditure of ~$2,000 is by no means a negligible amount, the price is not such that it is unfeasible and warrants a gofundme. Compare this to say a gofundme trying to raise funds to receive Spinraza. If insurance doesn’t pay, it is actually impossible to afford it. Additionally, there are ways to reduce the cost for the conference. For example, using a credit card to accrue points which could be put towards flights and hotels or waiting till the conference is at a closer location. Would the individual be able to go in the near future if it was held – for example – in New York, LA, or Chicago?

I understand that some may be in a situation where I would believe it justifiable to start a gofundme, but this warrants additional information and requires a case by case evaluation. If this was a once in a life time conference, or the location was the same every year, my thoughts may be different, but this is not the case. I do mostly agree, although remain somewhat equivocal, that an individual with SMA should attend this conference at least once, but I am pretty sure – at least for most people – that this does not warrant a gofundme.

 

[alex-telenson]

I’m late to the party on this posting!

The way I’ve come to manage this is a bit ridiculous, but works for me. Since I do love to eat, but I know that putting on weight is an issue, I basically allow myself one meal a day – usually around lunch. So if I want a double bacon cheeseburger with large fries, I can justify eating 1200 calories in one meal because that will fill me up for the day. This also regulates my bowel movements pretty well where my body knows it has to wait till the evening before it can start giving me troubles.

This is certainly not for everyone, but you do what you got to do.

[alex-telenson]

Hey Lydia – I just wanted to add that I started receiving Spinraza about 3 months ago and I had it done in Philly at Penn. The doctor who administered it was Bryan Pukenas and supposedly he’s one of the best in the world. He’s a really nice guy. I too have a complete fusion (ie luki rods from my neck to butt) and under the guidance of the CT machine mentioned by DeAnn, he was able to find an available opening in the spinal cord for the injection with little trouble. As far as the effects of the treatment, I’ve noticed a significant decrease in my fatiguability and an overall increase in my energy. However, I do have type III, but the treatment essentially increases your SMN protein levels, so at worst, starting treatment ought to at least halt any further progression of SMA (which is huge because I need to keep every last bit of strength I have) and at best you may get stronger and have more energy! Hope this helps ..

[alex-telenson]

I only half wish (maybe more like 60-40) that Elon Musk would have a child with a disability just so we can get Tesla Wheelchairs up and running

[alex-telenson]

I’ve given up having them take samples from my upper forearm area because of the aforementioned reasons. I now only have them take it from the top part of my fist/hand. They tie that rubber strap real tight around my wrist and smack my hand a few times and a vein almost always pops up. Maybe give that a try?

[alex-telenson]

I took full advantage of every and all opportunity that became available through my schools disability resource office. Through there summer internships I was able to land a government job almost immediately post-graduation. Although I no longer work for the government (long story), the opportunity was invaluable as the government is one of the most accommodating institutions there is. Highly recommend getting as involved with the disability office as much as possible.

[alex-telenson]

First time posting, long time reader. These forums are great! For sure keep em’ coming (I’ll try and be more active).

The improvement in the time it takes to fatigue is the largest improvement I’ve noticed since receiving injections. I’ve only had the loading doses, but my energy levels seem what they were when I was younger, which is a blessing (fingers crossed insurance stays fine). I’m not much of a napper because I’m border line insomniac and I can’t afford getting in bed and tossing and turning because I slept during the day, but what I’ve been able to do is workout (pool therapy, etc.) and feeling better (maybe even stronger!) after each session. Before Spinraza I felt weak after I worked out, and weak when I didn’t work out. It was a lose-lose. Things are starting to turn, however – oh so slowly, but better than nothing.