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Dennis Turner

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@forgetitdennis

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  • Profile picture of Dennis Turner

    Dennis Turner replied to the topic Covid has entered the building in the forum Coronavirus (COVID-19) and SMA 3 days, 14 hours ago

    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

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    Dennis Turner replied to the topic Building Back Stamina in the forum Adults ​With​ ​SMA 6 days, 1 hour ago

    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]

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    Dennis Turner replied to the topic Building Back Stamina in the forum Adults ​With​ ​SMA 6 days, 21 hours ago

    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.

  • Profile picture of Dennis Turner

    Dennis Turner replied to the topic Building Back Stamina in the forum Adults ​With​ ​SMA 1 week, 3 days ago

    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!

  • Profile picture of Dennis Turner

    Dennis Turner replied to the topic Building Back Stamina in the forum Adults ​With​ ​SMA 1 week, 5 days ago

    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]

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    Dennis Turner replied to the topic Building Back Stamina in the forum Adults ​With​ ​SMA 2 weeks, 1 day ago

    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]

  • Profile picture of Dennis Turner

    Dennis Turner replied to the topic Building Back Stamina in the forum Adults ​With​ ​SMA 2 weeks, 5 days ago

    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.

  • Profile picture of Dennis Turner

    Dennis Turner replied to the topic Wheelchair Woes in the forum SMA Assistive Technology/Equipment 2 weeks, 5 days ago

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

  • Profile picture of Dennis Turner

    Dennis Turner replied to the topic Wheelchair Woes in the forum SMA Assistive Technology/Equipment 2 weeks, 6 days ago

    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]

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    Dennis Turner replied to the topic Building Back Stamina in the forum Adults ​With​ ​SMA 3 weeks, 2 days ago

    Me too.

  • Profile picture of Dennis Turner

    Dennis Turner replied to the topic Spinraza Cycles in the forum Spinraza 2 months ago

    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.

  • Profile picture of Dennis Turner

    Dennis Turner replied to the topic Spinraza Cycles in the forum Spinraza 2 months ago

    <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]

  • Profile picture of Dennis Turner

    Dennis Turner replied to the topic Treatment Check-in in the forum SMA Treatments: Questions, Stories, etc. 3 months, 2 weeks ago

    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]

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    Dennis Turner replied to the topic Hospital Essentials to Take With You in the forum Adults ​With​ ​SMA 3 months, 3 weeks ago

    Kindle, phone charger, warm shirt, paper & pen

  • Profile picture of Dennis Turner

    Dennis Turner replied to the topic Everyone Staying Healthy? in the forum Adults ​With​ ​SMA 4 months, 1 week ago

    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]

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    Dennis Turner replied to the topic Wheelchair Repair Woes in the forum SMA Assistive Technology/Equipment 4 months, 2 weeks ago

    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.

  • Profile picture of Dennis Turner

    Dennis Turner replied to the topic Did everyone have a nice Christmas? in the forum Adults ​With​ ​SMA 4 months, 2 weeks ago

    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]

  • Profile picture of Dennis Turner

    Dennis Turner replied to the topic Possessed Wheelchair in the forum SMA Assistive Technology/Equipment 6 months ago

    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.

  • Profile picture of Dennis Turner

    Dennis Turner replied to the topic Have You Seen the Music Video for "Spaces" by James Ian? in the forum Disability in Media 6 months ago

    Loved it and shared it with others.

  • Profile picture of Dennis Turner

    Dennis Turner replied to the topic Spinraza adherence and cost article in the forum Spinraza 6 months ago

    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.

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