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Post by wonk on Aug 26, 2019 5:23:19 GMT -5
I am not sure how or why the disdain for gloves came about, maybe it's a macho thing. I know I wouldn't be caught dead in them.
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Post by JW on Aug 26, 2019 17:28:34 GMT -5
Everyone's spasms are different depending on the type and level of injury etc. I used to take baclofen for mine years ago, but had to stop because it started to aggravate another medical condition that I have. Aside from baclofen, regular and consistent stretching is the only thing I have found that helps to reduce the spasms.
I don't know of any big issues with the fingerless gloves. I used to wear them all the time myself in the first few years after my accident. I don't anymore because they are too inconvenient to put on and take off, especially since my right hand has nerve damage from the accident.
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Post by propheticstature on Aug 26, 2019 19:03:50 GMT -5
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Post by linda on Aug 26, 2019 23:06:17 GMT -5
đ made my day, propheticstature. Very appropriate indeed! If only they were fingerless ,,,
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Post by linda on Aug 26, 2019 23:43:18 GMT -5
Oh, I have one more question. How do you deal with temperature regulation? Itâs been quite hot these days, and my friend tells me he can sit in the sun feeling perfectly alright, but then all of a sudden he starts seeing stars. Is there any sign of warning before itâs too much? Thanks again. Youâve been of great help so far.
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Post by britishtetra on Aug 27, 2019 2:00:54 GMT -5
Temperature regulation is the worst thing, for me when I get hot I stop hot, I cannot sweat to cool down. Yesterday in England it was nearly 30° and I stopped in bed, and got up on the evening. It is an absolute nightmare to be honest, and the same in the cold itâs impossible to get warm. I would suggest putting cream on areas that you cannot feel, I wear leather wrist splints, and both my knuckles are brown. Wear loose clothing, preferably white, I go out like a cricket umpire sometimes. I have now got a bag on my wheelchair, where I keep bottles of water, GTN spray, and I have even got a cap with a fan on. It can be a serious issue, I always have my nieces and nephews touch my head and ask am I hot. Thank God it is cloudy today so I can get up in the afternoon, although the district nurse is coming to do my bladder washout. Happy days.
Also if you think he is getting hot, tell him because sometimes you donât realise until itâs too late. I once went fishing, I didnât realise that the Sun was shining off the lake, got burnt, and it took me three days to cool down.
Cheerio for now, Pete
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Post by linda on Aug 27, 2019 22:36:08 GMT -5
Oh Pete, that sounds horrible! Iâm really sorry that you are having those problems. Well, I guess thatâs a totally different story then. Thanks for your advice! Linda
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Post by britishtetra on Aug 28, 2019 2:12:54 GMT -5
Linda, I think it is the normal for tetraplegics with temperature, I have a friend whose body is like a block of ice in hot temperatures. Okay, letâs say like an ice lolly đ luckily last night was only 18° so I got some sleep. Umm, okay I was completely naked, with a sheet on and the fan. Happy days
Pete đ
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loreley
Full Member
Posts: 204
Gender: Female
Dev Status: Devotee
Relationship Status: In a relationship
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Post by loreley on Aug 28, 2019 5:13:25 GMT -5
My partner has no SCI, but MS and also can't tolerate the heat well. We bought a cooling vest, which definitely makes life easier. It is a vest with gel-filled chambers that you put in cold water till the chambers have filled up. Then just let the excess water drip off for a bit and put it on. It has been a life-saver in this hot weather and keeps you cool for hours. He also has a bandana for his head and wrist cuffs.
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Post by pumafreak on Aug 30, 2019 22:07:45 GMT -5
Surely he takes medication to help with the spasms, like baclofen ? Has he spoken to his consultant? Perhaps he could increase the dose or look at a pump ? I think he really needs to push his doctors into finding a way to reduce the spasms so he can transfer etc The best remedy for spasms for a high level complete injury is to lie in your stomach for at least an hour a day. This is easier said than done, but it does really help and can give you a good few hours relief. Baclofen and CBD also help, but in small quantities. The stiffness comes from your hips being in a sitting position for two long. Laying on your tummy will really stretch out the hips.
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Post by linda on Sept 2, 2019 22:33:50 GMT -5
Thanks again for all the helpful answers.
The spasms of my boyfriend have gotten so bad these days that itâs just terrible. He has done some research and found out that there is a thing called secondary lactose and/or fructose intolerance which causes exactly his symptoms: circulatory problems already after only eating a little bit, desire for sweets, sleeping disorder (how can you even have sleeping disorder on top if you have to get up every 4 hours only to shift the position or take medications...) This secondary intolerance can be caused by trauma or severe life course events. So now the question is if there is a chance that the spasms in the stomach at this point are not really regular spasms but a reaction to an inflammation of the digestive organs. I asked a friend who is gastroenterologist, but he said he doesnât see a connection between those kind of problems and neurological issues. But now again, my friend is just a regular gastroenterologist with no special experiences with SCI. The more I learn, the more I get the impression that there should be doctors with a more holistic approach when it comes to all kind of health issues which show and are experienced in a different way because of the paralysis and the lack of the sensation.
Thatâs funny with the gloves, @tc123! I wonât mention a word, just let him be happy with it as long as he can ... ;-)
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Post by Ackrin on Sept 6, 2019 0:11:20 GMT -5
I've been a quadriplegic for 22 years. After being on baclofen three times a day for about 4 or 5 years after my accident and not doing much of anything. I got an intrathecal baclofen pump implanted. It has a concentrated dosage of baclofen in it that goes from the pump through a catheter inside my body directly into my spine. That has worked wonders. You go in every so often and get it refilled. The only real issue was that is you have to have them replaced every five years due to the battery. But it was definitely worth it when I live in downing 15 pills a day.
I'll Take a picture of mine tomorrow when I have some help. But here's a YouTube video about it.
puck
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Post by linda on Sept 8, 2019 6:54:42 GMT -5
Dear @tcr123, thanks for all the good advice!
As for the rhizotomy, there was a young guy in hospital with him who insisted on having it done. The doctors tried to talk him out of it, but he still insisted. They did it and it failed. I donât know exactly in which way, but he was very unhappy with the result and wanted them to do another surgery, but the doctors refused. That was the SCI Center in Hamburg, one of the first addresses in Germany. It seems to be very difficult to find a place where they even carry out this kind of surgery.
My boyfriend found one place in Switzerland where they successfully sew nerves together. He was thinking of some kind of operation where they cut the nerves that cause the spasms and sew the ones together that enable him to feel again. Sounds a little bit like daydreaming to me...
As for the blood pressure, he said that it was going up and down when he was in hospital. He doesnât have an blood pressure meter at home but wants to get one and check it out. He was having the idea that it has to do with some pain that shows as spasms. He has an operation every 6 months where they attach Botox into the bladder to keep the activity down. Thatâs going to be in three weeks, so hopefully that helps too.
He will start work again in two weeks, then hopefully the car is coming along. Itâs awful with bureaucracy here. They tried to refuse him having the car with the lift, even though he had a proof from the doctor that he needs it due to the height of lesion. But he went against it, and since they have to pay for the taxi for him to get to work which is over one hour away by car from his home, they will most likely very soon agree on the car which comes them much cheaper in the end. So once he has the car, he can go see a doctor somewhere else, get proper physiotherapy, since his physiotherapist has cancelled the appointment three times in a row now and so on.
In general things seem to work out for him right at the moment, so we are in pretty good hope that itâs a matter of not too long time.
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estelle
Junior Member
Posts: 50
Gender: Female
Dev Status: Devotee
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Post by estelle on Sept 9, 2019 9:02:34 GMT -5
Hi Linda I can't give you any advice out of experience but as you mentioned before you may find some informations in Switzerland. There is a center specialized in SCI (maybe it's the one you were talking about). They may have some experience with this kind of problems or even contacts in Germany (I imagine that it would be complicated with a German insurance to be treated in Switzerland (as the bureaucracy works so "well"...)). The center is called SPZ (Schweizer Paraplegiker-Zentrum). I hope that your partner will soon get his own car and that work goes well for him!
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Post by linda on Sept 9, 2019 10:20:26 GMT -5
Thank you, estelle, thatâs very kind of you.
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