Nerve biopsy test: Is it done by a neurologist or rheumatologist?

@sunnyflower I looked online at the dream wear mask you mentioned. It's one of several that I tried at my last fitting, and one of the two finalists that I brought home. I found that the air fit 20 suited me best. The mask issue is complicated by my also having to wear a chin strap to keep my mouth closed - theoretically. I have finally found one that does a pretty good job.

One important consideration for me is having gear that will stay in place when I move around. Right now I'm wearing the chin strap over the nasal mask headgear. It really does well stabilizing the mask.

As you say, we all have our various pieces of medical equipment. We have a corner of the garage dedicated to crutches, walkers, walking boots, toilet seat extenders, ice machine, and sundry braces. We like to be prepared.

Jim

@sunnyflower I looked online at the dream wear mask you mentioned. It's one of several that I tried at my last fitting, and one of the two finalists that I brought home. I found that the air fit 20 suited me best. The mask issue is complicated by my also having to wear a chin strap to keep my mouth closed - theoretically. I have finally found one that does a pretty good job.

One important consideration for me is having gear that will stay in place when I move around. Right now I'm wearing the chin strap over the nasal mask headgear. It really does well stabilizing the mask.

As you say, we all have our various pieces of medical equipment. We have a corner of the garage dedicated to crutches, walkers, walking boots, toilet seat extenders, ice machine, and sundry braces. We like to be prepared.

Jim

@sunnyflower I looked online at the dream wear mask you mentioned. It's one of several that I tried at my last fitting, and one of the two finalists that I brought home. I found that the air fit 20 suited me best. The mask issue is complicated by my also having to wear a chin strap to keep my mouth closed - theoretically. I have finally found one that does a pretty good job.

One important consideration for me is having gear that will stay in place when I move around. Right now I'm wearing the chin strap over the nasal mask headgear. It really does well stabilizing the mask.

As you say, we all have our various pieces of medical equipment. We have a corner of the garage dedicated to crutches, walkers, walking boots, toilet seat extenders, ice machine, and sundry braces. We like to be prepared.

Jim

@jimhd Jim you made me chuckle with your "We like to be prepared" summation. I know what you mean. I also know what Sunny meant when she mentioned how much of an effort it would be to travel given all the paraphernalia she would have to drag along. Nothing about our lives gets less complicated the older we get or the sicker we get. Linda does have her own set of stuff built up since the neuropathy took hold, but I just thought a picture of her sleeping arrangement would convey the complication factor the best. She is sleeping right now but knowing her she won't mind me showing it.

In the photo below you can see the covers are pulled back to the other side of the bed so you can see what all she sleeps on. You can see the foam cushion I told you about for her apnea, the fan on a small table (right side of photo) for her feet which she sticks out beyond that round cushion you see at the right, and all the various pillows and cushions, blue heating pad, etc. And she has never slept better since this was all put together in the last couple years (her bed looked much more normal before). But imagine trying to set something like this up wherever you are traveling. And just the dragging alone is something else. Thank goodness, in that way at least, she does not travel any more, although I'll deal with it in a heartbeat whenever she decides to travel again. We both really want for her to be able to go up to Hartford to see my mom and family after the pandemic is over, so I am not giving up hope that that will happen. On the other hand I'm having a hard time actually visualizing her "on the road again". We'll see I guess. Best, Hank

Jim @jimhd I also settled on the ResMed AirFit F20 full face mask. I had used the Dreamware full face and Amara View and both worked well for a few weeks but then I had one of those nights and ripped them both off because I couldn't breathe. Both of the other masks fit under the nostrils and worked well as long as I could breathe through the nostrils. Once my nose plugged up all bets were off. I think that's part of being a "mouth breather" and has something to do with my deviated septum. Although when I mentioned the deviated septum to my sleep medicine doctor, he didn't think it would make any difference.

@johnbishop @jesfactsmon @sunnyflower and whoever else reads this conversation

John, I use the air fit 20 nasal cushion mask. I used a full face for many years, but they aren't compatible with a beard. Sunny, I'm pretty sure I kept the mask like yours (I guess that goes without saying, being a moderate hoarder), and I'm going to give it another try.

We have a firm memory mattress, can't remember the brand. It's too firm for me. It hurts my joints and hurts where my scs implant is. I don't have any body fat to cushion everything. So, I have an egg crate foam pad on my side of the bed. It irritates my wife because it makes the mattress too tall for our fitted sheets and mattress cover. But that's nothing compared to the blanket lifter. I've adapted it so it's high enough for my big feet, and I extended the legs that go between the mattresses. The sheet and blankets are draped over it. The top blanket that we use in the winter season is big enough to tuck in the corner, and keeps everything in place. I need to sew an extension on one of the year round blankets. Think about hauling that around and setting it up every night, Hank. I already pack my Bipap, 3 or 4 pillows, multiple pairs of shoes, a bag of medications, 2 dog beds and 2 dogs. It seems like a lot of stuff, but nothing compared to what Linda or Sunny would need. If we need much more, we'll have to drive the Cadillac, which would be fine with me. I like driving it more than any compact - for one thing, there's enough legroom for me to be able to move my feet around. When I drive, I have to move my feet every couple of minutes because of pain. Some of you know what that's about. Thank God for cruise control.

Jim

@jimhd Jim you made me chuckle with your "We like to be prepared" summation. I know what you mean. I also know what Sunny meant when she mentioned how much of an effort it would be to travel given all the paraphernalia she would have to drag along. Nothing about our lives gets less complicated the older we get or the sicker we get. Linda does have her own set of stuff built up since the neuropathy took hold, but I just thought a picture of her sleeping arrangement would convey the complication factor the best. She is sleeping right now but knowing her she won't mind me showing it.

In the photo below you can see the covers are pulled back to the other side of the bed so you can see what all she sleeps on. You can see the foam cushion I told you about for her apnea, the fan on a small table (right side of photo) for her feet which she sticks out beyond that round cushion you see at the right, and all the various pillows and cushions, blue heating pad, etc. And she has never slept better since this was all put together in the last couple years (her bed looked much more normal before). But imagine trying to set something like this up wherever you are traveling. And just the dragging alone is something else. Thank goodness, in that way at least, she does not travel any more, although I'll deal with it in a heartbeat whenever she decides to travel again. We both really want for her to be able to go up to Hartford to see my mom and family after the pandemic is over, so I am not giving up hope that that will happen. On the other hand I'm having a hard time actually visualizing her "on the road again". We'll see I guess. Best, Hank

Hank @jesfactsmon - The picture looks pretty close to the zero gravity position on my adjustable base bed. We recently bought a Ghostbed Split California King adjustable base bed (2 TwinXL Frames pushed together). The ZG (zero gravity) position is really comfortable and takes pressure off of the lower back. https://www.ghostbed.com/products/adjustable-base

@johnbishop I can see what you mean John. Linda is SO finicky though that even if we didn't already have too many beds (including one of those Big $$$ Sleep Numbers that is now in storage) I don't think she would be happy without sticking in a few odd pillows and other accoutrements here and there and god knows what all, and even then it might take her 5 months to get everything "just perfect". I think I'll pass on showing this to her, just in case she might fall in love with it if you know what I mean. 😉 Hank

Hank @jesfactsmon - The picture looks pretty close to the zero gravity position on my adjustable base bed. We recently bought a Ghostbed Split California King adjustable base bed (2 TwinXL Frames pushed together). The ZG (zero gravity) position is really comfortable and takes pressure off of the lower back. https://www.ghostbed.com/products/adjustable-base