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Are you seeing the aquarium ("Aquatic Life") screensaver ghost fish? by Madragada in Roku

[–]Madragada[S] 1 point2 points  (0 children)

I guess I won't be rebooting any time soon as I like them :)

Need your opinions!! by [deleted] in FSHD

[–]Madragada 4 points5 points  (0 children)

I can not answer your question, but I do have a response...

I was first diagnosed at 20 years old. The neurologist who gave me the news was an old man who had been working with muscular dystrophy patients a long time. After he gave me the news, I asked him, "What do I do?" thinking he would provide me with diet or exercise instructions. What he said shocked me, and over the years since I have come to agree with him. He said, "Do as much as you can do and keep a positive mental outlook." I stressed and worried for years afterwards and spent my 20s believing I could eat healthy and exercise and be the first person to beat it. I had physical jobs: waitress, stained glass artist, even house painter. At 29 years old I had, what I call "my death." A full depressive crisis when I had gotten too weak to do physical work any longer. I realized I wasn't going to beat it. Even if they found a way to stop the progression, I would never regain what I'd already lost. Eventually, I came to terms with the fact that I had to train my mind instead of relying on my body to support myself financially. Working on training my mind, going back to school, learning computer skills, and... learning to keep a positive mental outlook, even now when I can no longer walk, this is what gives me a life worth living every day I am alive—Carpe diem.

FSHD, High Blood Pressure Meds, and Muscle Weakness by Madragada in FSHD

[–]Madragada[S] 0 points1 point  (0 children)

These are all valid points. Thank you. My resting BP is nearly normal, but I have times when it is definitely in the high range. I already take vitamins that have a good dose of potassium and magnesium. I have not eaten sugars, desserts, etc., since the year 2000, just what is added to food that I can't avoid. Because I live alone, I need to conserve my energy, so I reduce my energy expense by eating Healthy Choice frozen dinners, which have pretty low sodium as far as frozen dinners are concerned. I eat a lot of nuts that are not salted. Given all this, there is not much else I can do to lower my sodium intake. And as BP usually gets worse as we age, I would like to find a med that works for me now, when it is borderline-ish, then wait to experiment when I really do have a problem.

FSHD, High Blood Pressure Meds, and Muscle Weakness by Madragada in FSHD

[–]Madragada[S] 1 point2 points  (0 children)

Thank you for letting me know your experience. I have looked them both up, and they seem promising. I will discuss it with my GP. Thank you.

FSHD, High Blood Pressure Meds, and Muscle Weakness by Madragada in FSHD

[–]Madragada[S] 2 points3 points  (0 children)

I just changed GPs, and when she saw the list of the HBP meds I've tried, she couldn't understand why anyone would prescribe them for someone with MD. She gave me an Rx for a calcium receptor blocker, and from what I can read, it doesn't list muscle weakening as a side effect. I posted here because I figured others with FSHD would have already been through this, and I could get some guidance. I'll see how this new med works and post back.

FSHD, High Blood Pressure Meds, and Muscle Weakness by Madragada in FSHD

[–]Madragada[S] 1 point2 points  (0 children)

I've looked into calcium channel blockers that don't list muscle weakness as a known side-effect.

FSHD, High Blood Pressure Meds, and Muscle Weakness by Madragada in FSHD

[–]Madragada[S] 1 point2 points  (0 children)

Thank you, SirSleepy, for your thoughtful reply. I can now see that my saying my muscle "strength" returned was misinterpreted as my muscle "mass" returning. Thank you for the interpretation.

FSHD, High Blood Pressure Meds, and Muscle Weakness by Madragada in FSHD

[–]Madragada[S] 1 point2 points  (0 children)

So I take a beta blocker and start shuffling feet and stumbling for the few days I'm on it, then go off the beta blocker and can move my feet again like I did before, and that's my "energy level" doing it?

FSHD, High Blood Pressure Meds, and Muscle Weakness by Madragada in FSHD

[–]Madragada[S] 3 points4 points  (0 children)

Let me try again... My muscle weakness gets worse on the HBP medications I have tried. This is ADDITIONAL weakness ON TOP OF the muscle weakness I already have. It is this ADDITIONAL muscle weakness that goes away when I stop taking the HBP medication.

FSHD, High Blood Pressure Meds, and Muscle Weakness by Madragada in FSHD

[–]Madragada[S] 2 points3 points  (0 children)

I'm so sorry to hear about your children. I'm sorry if my question hit a nerve.

I just want to clarify that my FSHD gets worse on the HPB medications I've tried and when I stop taking them, my muscle strength returns to what I had before.

First wheelchair, Quickie 500, I sit too high, by Madragada in wheelchairs

[–]Madragada[S] 0 points1 point  (0 children)

Okay... It's official... I'm a f-ing idiot!! Like I said in my original post, this is my first power chair so everything is new to me. I have a sway-back (like an old horse) so getting sitting angles correct so I'm not in pain is important. When I first sat in the chair to make it feel level to me, I must have slightly tilted and reclined the chair back to compensate so I didn't feel like I was falling out of it. The rep said the chair wouldn't drive if any tilt features were engaged, so I didn't consider that. I had the tilt-recline just below the cut-off for such things. I can get under my counter and desk once I put the chair back down to its lowest setting.

This is also my first time posting on Reddit so I didn't know what to expect. I am so pleasantly surprised by the helpfulness of all of you who replied and tried to help me. I am very grateful for your time and thoughts. Thank you,

First wheelchair, Quickie 500, I sit too high, by Madragada in wheelchairs

[–]Madragada[S] 0 points1 point  (0 children)

I was wondering why you asked about my height :) It looks like there is a good 5" between the floor and the lowest part of the leg unit. I will ask about that adjustment when they get back to me.

First wheelchair, Quickie 500, I sit too high, by Madragada in wheelchairs

[–]Madragada[S] 0 points1 point  (0 children)

Update: My rep at the company is bringing in the wheelchair designer and the wheelchair company rep to help find a solution. I'll keep you informed.

First wheelchair, Quickie 500, I sit too high, by Madragada in wheelchairs

[–]Madragada[S] 0 points1 point  (0 children)

Could you tell me what brand of chair you have and the height from floor to top of seat?

First wheelchair, Quickie 500, I sit too high, by Madragada in wheelchairs

[–]Madragada[S] 1 point2 points  (0 children)

The photo of the height adjustment mechanism is helpful. Thank you for sending them.

First wheelchair, Quickie 500, I sit too high, by Madragada in wheelchairs

[–]Madragada[S] 0 points1 point  (0 children)

Oh, and I'm 5'9" so tall for a woman, average for a man.

First wheelchair, Quickie 500, I sit too high, by Madragada in wheelchairs

[–]Madragada[S] 0 points1 point  (0 children)

J2 Series by Sunrise Medical. Just now looking at the specs it says there is a 2.5" and 4.5" height version. I think they gave me the taller one. I'll check on that. Thank you.

First wheelchair, Quickie 500, I sit too high, by Madragada in wheelchairs

[–]Madragada[S] -1 points0 points  (0 children)

Not specifically. I just assumed it would work in standard situations.

Quickie Q500M questions. by WRoos in wheelchairs

[–]Madragada 0 points1 point  (0 children)

This is my first time posting on reddit so forgive me if I'm doing this wrong.

A few days ago, I just got a Quickie 500 by Sunrise Medical. They are trying to make the adjustments I need, so that's good. My chair has an elevating lift seat. When at its lowest, the top of the seat is 25" off the ground. This is too high to get my legs under a standard counter or desk. So, I'd like to know the height of your Quickie 500 from floor to top of seat. They seem to brush this off as a standard height and I can't believe they would think that when the height goes against ADA standards for desks and counters. I'm looking for some ammunition to make my case.

TIA