Breathing problems

[KiwiBob]

Hi

I find on some days my breathing is not good when I am standing and trying to move about. It’s like my asthma is playing up but I don’t think it’s my asthma.

When I set down I am fine.

Does anyone else have this problem ?

[DeniseLB]

I think you will find we all do, I have had a few scary moments. The way I think is Ataxia means there is a breakdown between the brain and the rest of our body so everything is now an effort, you have to think to talk to walk to swallow to do anything. Everybody does go through that but for us now we have to think about how to do it.

Denise xx

[KiwiBob in reply to DeniseLB]

It’s amazing how much this Ataxia is effecting my body. I am still fighting it. My wife gets annoyed at me for doing to much.

[coat2003 in reply to KiwiBob]

good luck, and keep active as long as you can...

[DeniseLB in reply to KiwiBob]

Lay it on the line then. Brain has gone on the slow side, so you have to think to walk, to swallow, point out that everyone actually has to do that but we have to think more about it. I can't walk and talk, I can't carry loads of bags, I can't jump on a bus, so many things, but then when you say I can do this, but give me space then you tend to get a better response!

Denise xx

[coat2003]

Denise, how right you are...I have swallowing issues and speech worsened, going to the specialist. Just hope they can help out with exercises...as you said, physically muscles can be sorted, but what happens to muscles, that are supposed to work without thinking, what one is doing...?

[DeniseLB in reply to coat2003]

I am no expert, but when this all hit me I lost so much weight and I could barely walk and I was really scared, once I got to understand that at least with me that all organs were working then I thought ok then I guess it is up to me. On my bad days I really don't want to get out of bed, but a saying sticks in my mind, use it or lose it! It is as much about our mental state as it is about how we do things. I have just gone through 5 weeks because I was so unhappy that I felt like giving up again, but I am going to keep trying. I walk sometimes when there is no one about so I don't feel that I have to explain. We have summer on our door step and we should enjoy every moment!

Denise xx

[suzie44na]

Is this because of autonomic system problems? I get breathless at times and it feels like a band around my ribs (tightness). I also have low blood pressure and find it hard standing on the spot etc. I wake in the night feeling breathless too. I am not really sure of the real cause.

Suzie

[KiwiBob in reply to suzie44na]

I have low blood pressure too. The breathless is when I am standing and trying to move about. I don’t have this all the time, just some days I have it. I also have sleep apnea and use a machine at night for my breathing. I do not have autonomic system problems. I don’t know what that is.

[KiwiBob in reply to suzie44na]

Do you have a high pain tolerance? With the autonomic system problems.

[suzie44na in reply to KiwiBob]

No I am always in pain. Not sure if I have autonomic problems, my doctor just mentioned it once, she was going to test me then never did. I do have all the symptoms of autonomic dysfunction.

[DeniseLB]

At the moment for us there is no cure and I hate that everyday, I have been scared shitless! if I can get away with saying that. over the last three years, best thing is stop being scared and start to work out what you can do, test yourself, but move at your own pace, Some of it I think depends on if you want to try. I had to spend two months in a wheel chair and decided I wanted to get out of it and I am one of the lucky ones, I will walk until I die and that is important to me.

[KiwiBob in reply to DeniseLB]

Hi DeniseLB

I am always pushing my self. My wife keeps having ago a me for over doing it. I was told at the rehabilitation Centre that I could end up in a wheel cheer. They said the more I give into it, the sooner that could happen.

[DeniseLB in reply to KiwiBob]

I totally agree and I really do know it is hard, I was even told I was stupid when I got the wheel chair taken back, it does hurt to try but it hurts not to try. I had Physio and my first question was am I doing myself harm and she said no, so you can work through the pain. Actually the more I walk the less it hurts, it does as always start the same the next day but I always improve during the day. Oh having the right footwear always helps!!!!

[february]

Dear KiwiBob, I get breathless or breathe really heavy at times and always thought it was because I'm working so hard to do anything. I also have sleep apnea and use a C-Pap machine when I sleep. My neurologist told me that many people with ataxia have sleep apnea, but doesn't know why. My best to you..., ;o)

[KiwiBob in reply to february]

I just thought it was my asthma playing up. It explains why the blue inhaler did not work.

[Veteran250 in reply to KiwiBob]

As well as Ataxia, I have other medical problems, one being Epilepsy, which over time has affected my feet, I have no feeling in them which affects my Ataxia problem of walking.

My family doctor told me I should look after my feet or I may end up with an amputation,but I worry not until it happens, I dont need more stress, just get on with life, I’m 75 now!

I purchased a Nebulizer to help with my breathing, it works wonders! 😀

[KiwiBob in reply to Veteran250]

I am 53 soon. I am hoping to get medical retirement. Not working let’s me manage my Ataxia. You have no quality of live working full time and having Ataxia. I used to get home from work and crush. Work and sleep was all I did.

[Guyb in reply to Veteran250]

Hello I also have epilepsy and my feet are numb and hurt like mad I too have to hold onto rails and things to move keep going to neurologist but he dosnt seem interested in my ataxia I asked him to give me a rough guideline to my future but he won’t say I have all the signs of Huntington’s but he won’t test me

[KiwiBob in reply to Guyb]

Hi, my second neurologist consultant was not interested in my case or me. You should demand they send you to 1 of the Ataxia Centres.

[lottiejemma]

Yes I have the breathing difficulties, sometimes you can't tell, is it my Asthma , or is it the Ataxia, I also, when I sit down "What's new " nowadays, I am always sitting down, I feel relief , and am alright