[Chaz&Nina]

Nina has noticed lately that her spasticity has got worse. Her legs have always been tight, but it has seemed to have got a little stronger.

She is supposed to take 40mg of Baclofen a day, (morning, lunch, late afternoon, night) but even with alarms on her phone, and me reminding her, she still manages to forget the late afternoon one, and sometimes the lunchtime one, but 90% of the time she will have taken 30mg a day.

Now I know that the cold weather effects it, and I have heard people increase their dosage in the winter months. So should she be increasing her dosage in the winter months? And if she was to increase it, is it vital that she consults her doctor? Because this this could take sometime (due to her, and her Mum being very busy) .

Another possibility, is that she used to have physio twice a week, but due to her moving colleges she has had do decrease that to once a month! Which can't have had a good effect on her muscles. She goes in her standing frame half an hour every day which helps, and she also walks with sticks occasionally. But she doesn't do, and has never been given other stretches to do which I have seen other people speak about.

She regularly checks her skin, and has good sensory feeling, so sores aren't a possibility. She has had urine infections in the past month but has done a full course of anti-biotics and does fairly regular urine tests. I'm no expert, but I personally think it's due to the weather and her lack of excersise.

So would you recommend updating her Baclofen? Or at least asking about it? And in the mean time, is there any simple excersises she could do in the morning to help her loosen up?

Thanks in advance,

Chaz..

[Tetracyclone]

OK, Chas, you asked. I passed on responding the first time you posted this because you wish to be responsible for Nina's health care. I know, I can hear you objecting "You are wrong! I only want to help and advise!" But If Nina is complaining but still not taking her baclofen correctly you have someone who refuses to care for her health, preferring to complain about spasms as though the Spasm Grinches were after her instead of admitting she probably brings it on herself.

You remind her but still she misses her dosage? Then what does it mean to you that she chooses to ignore you?

It looks like she does not want your help, but only wants someone to feel concerned about her self-created drama. Is that the relationship you want?

It also sounds as though here education is her major focus right now and that the spasticity is a secondary annoyance about which she chooses to do nothing. You could offer a beautiful list of exercizes and stretches and Nina will "forget" to do them.

Until SHE comes on the forum with her own questions I cannot justify the time.

It is beautiful and warm to care deeply for someone, yet at some point, if you try the same thing over and over and it does not work- if once a month she has a beautiful opportunity to learn the things that will minimize her pain yet she does not practice them-
something is broken and neither information nor love will fix it.

I know... " I don't understand"

Keeping you both in my prayers,

Pwuff

[qbounce]

Wow Pwuff,
That was pretty insightful! Can't see anything more to add except, stretches work. I also hear from others on here that running hot water over the legs works for them also.

But, as Pwuff said, if she isn't willing to try these methods on her own, than maybe it isn't as big a problem as you think.

Also, I've never heard of taking more Baclofen in the Winter months and less in the Summer. Then again, I live in temporate Southern California.

[Tetracyclone]

qbounce, on Dec 24 2009, 01:47 PM, said:

Wow Pwuff,
That was pretty insightful! Can't see anything more to add except, stretches work. I also hear from others on here that running hot water over the legs works for them also.

But, as Pwuff said, if she isn't willing to try these methods on her own, than maybe it isn't as big a problem as you think.

Also, I've never heard of taking more Baclofen in the Winter months and less in the Summer. Then again, I live in temporate Southern California.

Q- someone mentioned more Bac in winter a few weeks back, I think, in the spasms area. I'm glad you miss the experience of what cold can do. I was even warned of it in steamy Taiwan, where people put on their down jackets when the temp goes down to 55 F.

[qbounce]

55F??--Brrrrrrr, I shudder to think! Well, those taiwanese don't have much coverage on their little bones. So I can see where some extra insulation might come in handy.

Now, I'm thinking if one decides to up their dosage, the doctor would HAVE to be notified in order to adjust the refills accordingly.