Dennis Turner

Dodgeball- exactly!

When it went through my house in December my visiting son, daughter-in-law, grandkids, and my wife all had it but I didn’t get it.

Go figure.

Stay well Alyssa

My pulmonologist has, at this time, not determined that I need a bipap. She expected I would before doing many lung tests. For whatever reason I am ok as long as I have a cpcp. Doing without even that for the past two months was very difficult,  but between my cpap breaking and the nationwide shortage right now, there were no loaners…[Read more]

Started this week with the same energy I have had since last Monday.  I still don’t understand it, but I will take it!

I have a official PT measurement set on Thursday, wonder if it will show the same improvements?

Also I got my repaired CPAP back Saturday which is definitely helping.

Day 3 and 4 were also great! As my wife said, however, maybe use some moderation…

Yes I have much more energy and can do so much more, but my muscles still get sore from the unexpected activity.

Still don’t know why this treatment worked, no change in my dose or other habits, but WOW!

Is this too early for an update?

After only 4 days, I felt the difference. I have been able to not only get outside, but do my yard work like a couple years ago. AND, I didn’t feel so exhausted that I needed a nap either yesterday or so far today.

I don’t quite understand why, it has never worked so quickly or at this level before. Praying it…[Read more]

She acknowledged what I had said and was not dismissive. Some of the studies she is following are suggesting that the Spinraza dosing level should be determined by body mass, i.e. larger needs more medication to reach same results.

Alyssa, I shared that another person on a SMA forum had related the lack of effectiveness this past dosing round and…[Read more]

I had an appointment with my new Neuro yesterday and shared how I hadn’t seemed to get the boost from my last Spinraza injection. My next is Thursday. I am hoping it makes a difference this time. Usually my stamina improves after a couple weeks.

Or we might just create a new cushion we could all agree does not seem to work for us ;<)

I have a Jay Hybrid seat. It has foam edges and a ROHO style center.

I think I hate it, but just can’t figure out why. If I over inflate it, I feel like I am going to fall out of the chair. If I under inflate it, it just hurts. I can’t seem to find a good spot, but always struggle with it.

The only good thing is it has helped with my circulation…[Read more]

Me too.

Diana,  I understand being older, I will turn 63 soon. I am taking part in a couple trials,  but I figure that is really to help others down the road.

My hope is that they will increase the dosage soon.

<p style=”text-align: left;”>Usually I have a similar cycle to yours Alyssa. This latest time however, I never felt the boost, just a slow stop in slump. I have a scheduled appointment in a few weeks and plan to discuss options with my Neuro</p>
I’m really not interested in switching to Eversdy,  Spinraza has generally been good for me. I think…[Read more]

I had my 9th Spinraza injection last month. Can’t say I feel like it did it’s magic this time.

Also feel like the 4 months between shots, might be too long. By the last two weeks before my next injection I am pretty much exhausted and struggling to get through the day.

With the Eversdy I would be concerned about cost, and those pesky GI issues I…[Read more]

Kindle, phone charger, warm shirt, paper & pen

Yup, seems it is everywhere. I think it tore through my house over the holidays, my wife, son, daughter-in-law and my grandkids were all sick. We could not access any test kits and nobody was extremely sick so I can’t say it was Covid for certain.

I am just grateful everyone seems better now. I did not feel sick at any point which I really…[Read more]

My new chair Permobil F3 came with these gel covered armrests too squishy for me. I had them changed to the ones you had/have. I kept the gel pads in case I start having issues.

Way late seeing this, but for the most part it was wonderful.

I enjoyed Christmas with my grandchildren, 2.5 and 5, for the first time( they live overseas).

I think we had a visit from Omicron, everyone but I were struggling with bad cold like symptoms. Fortunately we have all recovered,  it lasted from Christmas eve until New Years…[Read more]

That has happened to me twice, minus the permobil rep part and my chair was stuck in the extreme high position!

I understand getting insurance approval, but come on, this is ridiculous. I often feel unheard by the company that provided my chair. Enough that I changed companies for my new one.

Let’s see if this new provider is any better.

Loved it and shared it with others.

I thought the same, but I pray not.  For me, Spinraza has meant that my loss of independence has slowed instead of increasing. It would be a very great personal loss to need to stop it.