Having back problems

[Lilacs53]

Hi everyone,

For the last few days I have been having problems with my back and I'm not sure if it's ALS related or not. Maybe some of you would know and I would have more of an idea to make an appointment with the Dr or not.

It's not the muscles of my back, but my spine, specially the middle of my spine is where the pain is coming from. It doesn't bother me when I'm sitting, but when I go to move or stand up is when it hurts and a little while standing. That area of my spine is very tender to the touch as well. Does this sound familiar to any of you?

My family and I have noticed that my voice is changing. Wondering what type of software works the best to record my voice for future use. I tried to download the ModelTalker Voice Recorder, but my virus scanner wouldn't let me.

Dinner is almost done, so I should get off of here and get myself in the living room. Hope you all have a good evening/day depending on when you read this.

 

[GregK]

I'd give your GP a call about the back.

You should be able to temporarily disable your antivirus software, this is a fairly common practice.

 

[Graybeard]

My spine problem started at the same time I lost my appetite in Sep 2012. It gradually got worse to where I have L5-S1 bone on bone, so can't walk upright. My voice changed nine months after that, nearly two years ago. I still have voice but my words are garbled.

 

[Lilacs53]

Thank you both so much. I will put a call into my doctor.

Sucks that we all have to go through this. My prayers are with us all.

 

[patrick123]

I never had back issues. During my diagnosis process they of course did an MRI. No spinal issues at all. The issue noted was my muscles on the left side were smaller than the right side. Doc said it was part of the atrophy going on. I do have back pain at take meds for it.

Patrick

 

[Lilacs53]

Thank you Patrick, wonder if that's what's going with me then. My weak side is my right side and I noticed this morning that is where the bulk of the pain is at in my back and now my hands, but more my left hand than the right.

 

[gooseberry]

My husband has a voice recorder by zcom or 2com the h1 handy voice recorder. It is a simple recorder that works with memory cards. You just record what ever sayings or stories you want to for your loved ones.

 

[lgelb]

Lilac, small-of-back pain in someone losing mobility suggestings going back first to the sleeping position/support. As the muscles around the spine lose function, the spine itself is bearing more weight and less able to compensate.

In particular, I would make sure your pillow is providing enough shoulder support and that your back is angled, not flat. If you don't have a bed that will do that, I'd get one. I would also consider a foam overlay to better distribute your weight, however small (your weight, not the overlay).

 

[patrick123]

I just got a hospital bed yesterday. Hope it helps my back issues.

 

[lgelb]

Hope it helps, Patrick. Start w/ your head and feet each at a 15-or-so degree angle and go from there.

 

[Lilacs53]

Thank you all so much. I am thinking about a hospital bed, but kind of would prefer a sleep number bed, so that my husband & I can still share the bed, but that might be way too expensive, and not sure which would be better. I hope it works out good for Patrick, I think my problem is the weakness spreading like yours. I mostly lay on my sides and rarely my back. My back isn't hurting as much now, but the length of time that I can stand in place has shortened. My hands are to the point now that typing and texting wears them out and holding things tires them out. This is getting really scary. I have a doctors appointment on the 10th with my primary care doctor, hopefully she can help wit this too.

Gooseberry, I will look those up. I'm thinking about using the ModelTalker, but not sure yet. Has your husband tried it?

 

[lgelb]

Lilac, while I certainly understand your wanting your husband to share a bed, be very clear that something like the sleep number bed is not nearly the same as a hospital bed. Even their "adjustable" bases only move the head, not the feet (which need support to alleviate your back pain, probably, even now) and certainly not the entire bed height as you need to have for a lift to get in and out of bed. And the SN beds are not cheap.

Also, as your disease progresses, you will be less and less tolerant of pressure anywhere on your body -- that includes cuddling. You're probably going to want to sleep at a different temperature, with different bedding, supports, etc. that would make it difficult for your husband to "share." And it is very difficult to care for someone if you can't easily reach her from both sides, standing next to the bed. Think about anything from eye drops to transfers, sling placement, BiPAP adjustments, positioning.

You can always push beds close enough together so he can touch you when he's in bed -- an adjustable bed needs a couple of inches to move, is all. That's what we did. But unless your progression is very slow, and it doesn't sound like it is, I would opt for a hospital bed. Remember, the bed doesn't need a headboard, footboard or rails unless/until you need these things (we never did, though we did install a side rail and kept it lowered, as a parking space for the bed control). It therefore doesn't need to scream "institutional" or wall you off from your husband.

 

[Lilacs53]

Thank you lgelb, we have decided to try to get a hospital bed. We read that insurance and medicare usually does pay for it, or at least a good chunk of the price. We now have to figure out how to get a bed for my husband, for there won't be room in our bedroom for the bed we have now, plus a hospital bed. Eventually tho we will get this all figured out.

Last week my back didn't give much trouble and neither did my hands. It's like God took that away so that I could enjoy my birthday, which was on Friday. Yesterday we had a little party and we all decided to sit outside. I sat in a chair that I normally do sit in out there, but this when I went to get up I wasn't able to and Gerard had to help me. Since then my back has been bothering me, so I guess I won't be sitting in that chair again. Such a drag what this disease does to us all.