After the initial application, the paperwork mostly concerns the non-profit that pays my copay.  They also pay certain Medicare costs, including Part D premiums, and miscellaneous other expenses, like travel to and from a neurologist.  That’s where a lot of paperwork comes in.  You have to file for each expenditure that qualifies for… Read more

I’m on Medicare parts A, B, and D.  My Part D doesn’t list Everysdi in their formulary but they cover it.  The co-pay is around $1500.00 per shipment.  Genentech referred me to an organization that picks up the co-pay, plus all my medicare part B, plus other miscellaneous expenses like trips to my Neurologist.  What the status of the “doughnut… Read more

Hi again Alex,

I’ve always experienced involuntary twitches, but my hands are OK except for the tremor.  I only occasionally have cramps, and I believe my Spinraza treatments have eliminated those, knock on wood.

With me it’s always been my legs that are weaker than my arms and hands, so I can’t give you advice about your fingers.

For me,… Read more

Another type iv here. I can relate to your guitar troubles.  My bug a bear was the piano. I could never get a gentle touch.

As for hard physical labor, I did that as a young man into my thirties, and I don’t think it did me any harm; in fact it probably helped keep my legs stronger.  But as time passed it became less and less possible.

I’m not… Read more

Thanks for your support Kevin. I admire your attitude. I think your story of dancing in your wheelchair is fantastic – I wish I’d seen it.

I’ve run into some problems posting.  I will continue when I can.

I have been following this forum for a while, but have not registered or posted before now because I’m embarrassed at how lucky I am in comparison to most.  I am a male with SMA Type IV.  I have no functional smn1 gene, but at least four copies of the smn2 gene.

 

Here is my story.

 

The actual onset of symptoms occurred when I was… Read more

I am a male with SMA Type IV.  I’d be glad to share my experiences with you.