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laurenv

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Hello! This is my first post on here and i have been looking for anywhere to ask questions / get advice on ways to help my mum. My mum is 61 years old and has eventually been diagnosed with flail arm syndrome which is a rare type of MND. As it seems to be, it took quite a while to get to this stage of getting a diagnosis. She had been having trouble with her arms - feeling weak, having trouble raising her arms since early 2015. around June / July 2015 she returned home to Australia from living in Malaysia and went to see her DR who sent her off for a whole lot of tests to be done. the first specialist she went to didn't really do any tests and basically just told her point blank she has MND and 2-3 years to live. The new specialist has been amazing and told her to ignore what this other DR said and after about a year of different tests, she has been diagnosed with flail arm variant. I've been searching and searching for information on flail arm and i seem to be coming across the same information. At the moment, she has become very anxious and has her good days where she's positive but they seem to be few and far in between. She has lost most use of her left arm now and she can still just use her right arm enough to feed herself but that is about it.

she has an appointment this week to have her breathing testing as she keeps saying that she can't breath and over the past 2 months, I've noticed that she does everything she can to avoid leaving the house however i'm unsure if this is anxiety causing similar to a panic attack? she was seeing a psychologist for a few months after she first saw the first, not nice specialist for anxiety who gave her lots of coping mechanisms and seemed to be good for her however she has now stopped going and we've tried to get her to go back however she doesn't want it and i know we can't make her go. she needs to be ready.

Does anyone have any advice or ways in which we can help her? we might be going around things the wrong way and perhaps there is a different way we can try things. All we want to do is help and do everything we can for her to help.

thanks
Lauren
 

laurenv

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Just realised i got the dates wrong! it was the beginning of 2014, and first saw the specialist in July 2014 (not 2015).
 

Atsugi

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Lauren, the first thing I would ask is "help her to do what, exactly"? Many children want to make their parents live longer, live better, live healthier, live happier. Often we have good intentions but we cause intended problems.

I don't know if this applies to you or not, but I'll say it anyway. This is my general advice to all children of parents with ALS:

Your mum is full grown and has different priorities. She might express them, or not. The important thing to realize is that the person with ALS gets what they want, not what we want for them. Even if we think they're wrong, they are their own boss. Some people might not want to live longer, better, happier lives. (And they might lie about it.) That's up to them.

Now, having said that, my general advice to all people who care for, or care about, a person with ALS is to be there for them often. Be prepared to do physical work, like chores.

The important thing is to maintain a good relationship. Don't add stress to her. Don't expect her to be positive all the time. Just be there if she wants you.
 

affected

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Hi Lauren and welcome

I'm so sorry for your mum's diagnosis. Are you seeing Dr Rowe in Sydney?

Has your mum done an advanced health directive? Really important to do this very early so you know her wishes, and also POA and guardianship so you can make decisions if she reaches a point she can't. Well having said this, are you her primary carer, does she live with you or with a spouse who would hold the POA probably.

Flail arm is not that rare, it is ALS (or we call it MND in Australia) is rare. The three main ways it starts are flail arm, flail leg, or bulbar. The rare onset is respiratory.

Now your questions really revolve around what your mum wants, and what makes her happy. If you can pin down what she wants, you may be able to help give her that.

It's not black and white - some PALS want to do a big bucket list, some want to hide away, some want to be surrounded by family.

We will often ask you lots of questions back so we can try to give you support that meets your own situation.
 

affected

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aarrrggghhh sorry mods, I said something wrong ... again ...

Lauren I've answered you but my post might not appear for a little while.
 

lgelb

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There are a couple of flail arm variants, just to be more confusing. One never involves anything but arms and is not ALS. The other does; Larry had that subtype. The classic form is stick-figure thin arms that dangle limply (and therefore need support everywhere and shouldn't dangle on their own; there is even a sling for standing if needed). There is a high risk of subluxated shoulders and once they're out, they don't go back.

Given the way pts are identified and the studies done, all we can say is that you may see slower progression in your mum than some others here, Lauren.

As for helping your mum in the way that's best for her, that's a researchable question with her as the respondent. Just keep the lines of communication open so she feels comfortable responding to questions like "Anything I/we can help you with?" "You don't seem to want to go out -- is that a problem for you?" Certainly make sure her breathing is tested and supported with BiPAP if needed.

But mostly let her fill the white space, don't interrogate her and just let her know you are happy to be the service bureau if/as she reaches out. Sounds like the final verdict is recent and that is a shock that requires processing, even if she/you think you already knew.

Welcome.

Best,
Laurie
 

affected

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Oh thanks Nikki, I was certainly confusing flail arm with upper limb onset!

I had a friend PALS here locally who was flail arm, but even knowing Pete for a couple of years I didn't realise it wasn't the same as upper limb.
 

laurenv

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Thank you so much everyone for taking the time to write back! I really appreciate it! :) I've been reading your comments throughout the time and have tried to write back many times but I kept getting stuck in what I want to say.

Atsugi - thanks for your advice! It was good to hear. When I said helping her, I just want to help her in anyway I can and that's in doing the things she waited her whole working life and waited until she retired to do but also just making her feel better about herself. I've moved back home to help her and to help my dad in her care but also because I want to spend as much time with her as I can. I want her to be able to keep doing the things that she's been looking forward to for so long and find ways that she can still do those things (if she wants to). She's frightened and its hard to sit back and watch her be frightened but I completely understand what you are saying that she is her own person and needs to do things the way that she wants to do.

Hi tillie - mum sees dr vucic in Sydney. My dad is her primary carer but I've just moved back home with my partner to help as well and my brothers & sister are always here too with the grandkids which is nice for mum and dad too. she misses doing her favourite things - cooking and photography so I'm trying to find ways that she can do this without using her arms to much or to be involved. With cooking, I'll often use one of her recipes but get her to tell me how to do it and with the photography, she just finished putting together photos books of their dream trip to Europe last April. Other then that, her and dad go away in their caravan to the beach for a few months of the year which is good. It gives her something to look forward to and to plan. All of these things, I just want to make sure that she can continue doing for as long as she can.

Hi Laurie - thanks for replying. I'm sorry to hear of your loss! yes mum has the same type with her arms. She has a sling that she sometimes wears that she actually got from the states but not as often as she should as the seperation of her shoulders is already there so it's quite painful for her. With her not wanting to go out lately, It's more of a concern on my side that she's not ok and even though she talks to me about about how she's feeling most of the time. It is still quite a shock and as a family, we have never been closer. we both have our moments where tears are shed together and just trying to make the most out of every moment.

Thanks again everyone for taking the time, I've been searching and searching for somewhere to go and talk.
 

lgelb

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If the sling is more painful with than without, I wouldn't use it. Even though she can still walk, a rollator or even manual wheelchair so her arms/shoulders can be supported (we used a lot of latex foam) might help with outings, though she would hate it at first. Women her age often underplay pain.

Glad to hear your family is strong for her.
 

laurenv

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Hi Laurie, sorry I didn't word that very well, the separation in her shoulders can be quite painful (not the sling) .. The sling is a double one for both arms and helps her a lot with her balance as well but she doesn't wear it as often she should .. Only around the house. Your spot on, She is hesitant (and at the moment) won't use a walker or anything as she feels this is "giving in" to it.!
 

van1

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You mentioned the words anxiety and your mother seeing a psychologist . The flail arm syndrome is enough to deal with, why add anxiety. See if you can have her follow up on the anxiety.
 
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