Talking to your doctor

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ViewsAskew
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Talking to your doctor

Post by ViewsAskew »

We Move sends out newsletters every so often regarding patient doctor communication.

They sent one this weekend that I thought was very helpful.

They suggested using a "used to" vs "now" story when a doctor asks you how much pain or how much sleep, etc.

So, if the doctor says, "How much pain is this causing on a scale of 1-10?", the answer might be something like this,"Well, let me put it this way. I used to be able to get on the ground and kneel and garden. These days, I can't even bend over."

On my walk this morning, I was thinking about how I could use this regarding RLS. For example, my cognitive function has decreased significantly in the last 5 years, but the last 6 months has been a true challenge. So, I might say, "I used to be the first one done reading something in a meeting and immediately understood what it meant. Now, not only am I the last one done, but I can't understand all of what I read until I read it several times."

I'm not sure how well this works, but it certainly seems worthwhile to explore and think about before going to the next doctor's appointment for whatever is ailing.
Last edited by ViewsAskew on Sun Mar 29, 2009 9:11 am, edited 1 time in total.
Ann - Take what you need, leave the rest

Managing Your RLS

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Aiken
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Post by Aiken »

Yeah, that's a good idea. Quality of life can be difficult to evaluate subjectively, because we get used to things, but our doctors would probably be better off with an objective evaluation.

It's actually kind of upsetting to think about the "used to" part, though. :/
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

Polar Bear
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Post by Polar Bear »

Hmmmm... 'the used to'..... which we can sometimes make the mistake of putting down to middle age :roll:
Betty
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ViewsAskew
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Post by ViewsAskew »

I HATE the used to part.

When I started doing this yesterday, I almost hyperventilated and today have had a hard time not going into a depressive spiral.

As you said, Polar Bear, this can be hard to differentiate from the general aging process. My DH is having significant issues (he has autoimmune issues) and we never know what's aging, what's a potential AI involvement, etc. His doctor thinks he's just aging. But, when we did this activity yesterday about his losses, it definitely seems the used to items happened much too quickly and there are many more than there should be.
Ann - Take what you need, leave the rest

Managing Your RLS

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woodsie357
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Post by woodsie357 »

I used to recognize family members. I've now seen my 8 year old daughter twice and didn't recognize her as anyone I knew.

First time was at Chuck E Cheese:

I saw a kid about 10 feet from me and thought now thats a chubby kid too much pizza for her. Her parents should lay off the pizza. Several mins. later I realized that was my Jodie. She's not even chubby she's under weight for her age. So why would I think she was someone else, and then think she was chubby on top of it. /Boggle

The second time was tonight at Costco:

This time I saw a young girl kinda cute, putting Ketchup on her hot dog, I was in line behind her about 3 feet away. At least this time she was a cute young girl to me, still not mine but cute.

Feels pretty bad when you don't recognize your kids, I mean we got there in the same car, we sat at the same table. She's been my kid for 8.5 years now.
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ViewsAskew
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Post by ViewsAskew »

Woodsie, I can imagine how frustrating this must be to you. I truly mean that, although what I'm about to type may make it sound like I'm laughing at you...that couldn't be farther from the truth. I am laughing with you and hope you're going to be laughing with me, too.

My SIL's father is a brilliant man. He's a mathematician and worked developing computers in the 50's through the 80's. He is well known in some circles, as I understand it, for his inventions that helped create the computer as we know it today (or some parts of it - maybe hard drives?). He's one prestigious awards for some of his work. He can quote complex mathematical formulas and can work out things in his head that most of us couldn't do on paper.

He also cannot remember the names of anyone, including his children. Well, now in conversation he usually can get them right, but not if he doesn't think about it or is put on the spot. Throughout their childhood he referred to them as "the girl" and "the boy" much of the time. At work, he could not remember the names of people he worked with and sometimes had to take reminders with him when he met with superiors or had meetings. Adminstration people? They were all called "you" or "dear soul" or some such. This became harder when things like "sweetheart," "dear" etc. became politically incorrect.

When he visits his daughter these days and we all get together for dinner, my SIL gives him a refresher course regarding who all of his inlaws are. My SIL has been part of the family for almost 20 years, FYI. If they are coming to visit us while he is here, the car ride is filled with a drill exercise to help him from having to point and say, "hey you" when in conversation.

Between the two of you, you'd know both who your children were and what they were named.

Hope that made you giggle at least.
Ann - Take what you need, leave the rest

Managing Your RLS

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Wayne
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Post by Wayne »

Most of the literature about RLS says that people have a hard time describing their symptoms and so did I when I first saw my doctor. But here is what I've come up with for mine.

Question: Have you ever road a motorcycle or sat in a massage/vibrating chair for a length of time and then when the engine is shut down or the massage chair turned off, you can still feel the (ghost) vibrations for a few minutes? Well that's how my legs are all the time.

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woodsie357
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Post by woodsie357 »

Ann - Yes I did chuckle. I can relate a bit.

I don't know if it's the same or different from looking at your own child and your brain tells you they are a stranger.
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Neco
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Post by Neco »

That's a good description Wayne.. It's like some kind of ringing vibration that keeps going with a sort of added numbness to it when I smoke and my meds haven't kicked in yet.

Wayne
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Post by Wayne »

Interesting Zach. I smoke too, but don't notice any increase in the RLS during or afterwards. I'm a light smoker (avg 7-10 per day).

I don't notice any difference even when I'm forced to go without. like a recent cross country flight that ended up being 12 hours because of a cancelled connecting flight and rerouting, my RLS was at about the same level as usual. I really wanted a smoke though.

Flying doesn't seem to aggravate my RLS, but driving a car long distance will (big time) I have to hit a rest stop every two hours. Strangely though just being a passenger in a car will not aggravate it.

Ok I'm getting off topic. Off to look for smoking and driving discussions.

Neco
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Post by Neco »

We must be real backwards..

I smoke about a pack a day, and with pretty much every cigarette, except when my meds are peaking, I feel something. Sometimes not very severe, other times the first or second drag will hit me with that numb ringing and sometimes a little pain.

Also, I can't stand being a passenger much, but when I drive I am more OK as I chock it up to paying more attention to another activity instead of being idle.

mackjergens
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Post by mackjergens »

I smoked for 25 yrs and was up to 3 pkgs aday when I quit. that was in the days when I could find NO help for my rls, but when I quit and I quit cold turkey after hospital stay of 9 days, I have never noticed any difference in my rls. it was still as strong as when I was smoking, but of course my nerves were worse for a long time. just trying to adjust to no smokes. Its been 9 yrs this Oct since I quit and I still want a cig, and I still love to smell smoke from a cig. but I hate the smell of cig smoke on people I come in contact with.

I have said over the last 9 yrs if I had known how bad I Smelled while smoking and how offensive that smell is to others, I would have quit along time ago! *L* it really does stink to others non smokers..

Aiken
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Post by Aiken »

My parents smoked like chimneys nonstop during my entire life with them. When I moved out and got used to a smoke-free home, I found out just horrible I must have smelled to my friends, because running into people who lived in smokers' homes was quite unpleasant. I'm surprised I had any friends. I must be more fun than I think I am.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

Neco
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Post by Neco »

When we moved into this house we made a rule that any smoking is done in the kitchen, at the stove with the fan on.. We also have a fan built into one of the walls that came with the house, so that helps too when parents have company.

Wayne
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Post by Wayne »

I grew up in a house were both parents smoked too. It wasn't until I went to college that I noticed the smell when visiting on breaks. I didn't smoke then, I started my senior year in college.

When I moved out I had a non-smoking roomate so I always smoked outside. To this day I still do because I don't want the smell in my house, or car either. Most people usually act quite surprised when I tell them or they see me smoking. So I guess I'm succesful in keeping the smell from getting into my clothes

I know, I really should quit though

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