[jeremiah-kelley]

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 hole” is I don’t know, but I’ve been on it for for nearly six months with no hitches.

I recommend talking to Genentech.  I find them far more helpful that my Spinraza representative was.  My rep texts me every time a shipment is due and texts me again to make sure it arrived safely.  The only disadvantage is a certain amount of paperwork which is YOUR responsibility to complete.  I do have a copay with Accredo, which is the drug company that mixes up the drug in a solution and ships it out, but that’s only $15.

[jeremiah-kelley]

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, the changes have been gradual, with a slow deterioration throughout my adult life.  I’ve never experienced fluctuations, except now that Spinraza is available, I do seem to get a little weaker when close to my next treatment, after three and a half months, say.  I was able to do real physical work for quite a while, but no longer.  I can still stand and walk unaided, but with my quadriceps completely shot, it’s more a question of balance than muscular control.

– All best, Jeremiah

 

[jeremiah-kelley]

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 sure what the effect you’re seeing in your hands actually is. I have a pronounced tremor.  But overall it’s my legs that are affected.

[jeremiah-kelley]

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

[jeremiah-kelley]

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 thirty.  I was at a party and dancing when it suddenly felt as if the rug had been pulled out from under me, and I ended up flat on my keister. I could tell it wasn’t simply a loss of balance.  It felt more like my legs just weren’t there for a split second.  Very disconcerting.  I pretty much stopped dancing at that point.

 

A few months later I discovered that I could no longer run without falling down.

 

Symptoms continued over the years, getting gradually worse.  Sometimes I would fall down while simply standing in place.  It always felt as if my legs had “disappeared” for a split second.

 

I started to see a neurologist about twenty-five years ago, who commenced to treat me for “drop attacks”.  He was convinced I had a form of epilepsy. I spent more hours in an MRI than I care to recall.  I complained of weakness in my legs, and pointed out that I could only get out of a chair by using my arms, but he’d just suggest another MRI.  He prescribed various anticonvulsant drugs. He finally retired

[jeremiah-kelley]

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

[jeremiah-kelley]

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 reimbursement  separately.  If it’s a recurring expense, like monthly Medicare premiums, you have to file claims monthly.  The only claim you don’t have to file for is the actual co-pay – they work that out with Accredo I believe, the supplier of the Evrysdi solution.  It’s not as complicated as all that may sound, but you just have to stay on top of it if you want reimbursement.

[jeremiah-kelley]

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.