Connections between Anxiety attacks and MND

[miranda]

Jude - even though your mum no longer goes to the oxford clinic, you can still liaise with them by phone or email.
Following Ellie's suggestion and my previous comment, I'm sure Rachael Marsden, the MND nurse, will help.

[Ellie]

Hi Jude,

Does your mum not even have an MND Nurse? She / he can be a good ally and liasion between professionals.

Jude, it's heartbreaking to see you left coping with this on your own - please ring the MND Connect Helpline and see if they can help ease your worries and enhance your mum's care and quality of life.

Re Cognitive and Behavioural Screening: this is what I undergo, it shouldn't vary much no matter where the MND person is.

The screening is a two pronged approach - one for cognitive changes, one for behavioural changes.

The cognitive test screens for language, fluency, executive function, memory etc and is completed by the person with MND.

The behourial test is a questionnaire asking about the person's interest in themselves, in others and in hobbies, socialising etc. Both the person with MND and their spouse/adult child/carer fill out identical questionnaires.

There is also a third test to check a person's mood and to screen for emotional lability. Again, this is completed by both the person with MND and by the person with them (i.e. by the person who has to put up with them!!)

All of these tests can be done at home if necessary and I'm quite sure an MND Nurse could do them. It should not be necessary to attend Clinic just for screening...

Take care.

Love Ellie.

[Jude Hall]

Hi Spiersey,

I wonder if these episodes are linked to his breathing becoming compromised? Has he had respiratory assessment recently?

As our breathing muscles weaken, we can't breathe deeply which can lead to feeling panicky, claustrophobic and a sense there “isn’t enough air” which may explain his anxiety regarding these situations...

Feelings of frustration are normal as we lose the ability to do tasks which even a baby can do, but I am sorry you’re bearing the brunt of your husband’s frustrations. As he has progressed rapidly, he must be very anxious about his and your future.

Many people with an MND take an antidepressant and they say it helps sleep too, so maybe that’s an option? As is counselling - is he linked into a hospice?

Unfortunately a significant percentage of us with ALS/MND will experience frontal lobe involvement, executive or non-executive impairment, which leads to behavioural and / or cognitive changes, sometimes subtle, other times more obvious. MND Clinics screen for any impairment.

I hope you get some vital “me time” - caring for someone with MND on your own is very intense and difficult.

Take care.

Love Ellie.

Hi Ellie, Do you know what the screening process involves? Mum no longer goes to an mnd clinc as her care has been moved to the hospice team as the clinic was too far for Mum to travel. Of think we're missing out on a lot of care now though as all mum gets is an appointment with the hospice consultant every 3 months where a physio or OT makes notes but never inputsanytjing yo the meeting the last time mum contacted the hospice for help she was told the hospice was predominantly for cancer patients and the time befor that she Was told sheconlu gets an appointment every 3 months and you have only just been to clinic ( 3wks previous). Don't they get how fast MND changes!
So wish we could swap her care to the next nearest hospice.
I wonder if some of mum's out bursts are impairment or just fuse she's in pain all the time may be.
Difficult topic but good to know we're not out there on our own. Behaviour changes can be tough on us carers as well as our mnd worriers.
Love to all x

[Spiersey]

Thanks Ellie that’s all really helpful. I will chase tomorrow xx

[Ellie]

If the device can be easily set to different heights so his head isn't flat and he can lie comfortably, that's what a hospital bed would also achieve.

The pros of a hospital/profile bed are that the height of the bed itself can be changed for transfers and repositioning (saves strain on your back), both the foot and top of the bed can be raised and it's all electric, so it's effortless.

Unfortunately, the vast majority of us get single beds provided, though doubles with 2 individual mattresses are available but if they're divan-style, they might not be height adjustable or suitable for some hoists. Some spouses put a standard bed alongside their partner's hospital bed. As with many things, there are compromises

Shame about lengthy wait for respiratory appt. I'd give them a ring and explain it's now urgent...

Love Ellie.

[Spiersey]

We last saw the consultant on 11th April and he wanted the referral to be urgent however we are still waiting to hear from Papworth re an appointment however they are in the middle of a massive move onto the Addenbrookes site in Cambridge so perhaps this is the root of the delay.

We had been made aware that some breathing support is likely to be the outcome but tbh it would be welcome as I’m certain this would help him feel more relaxed in general.

He hasn’t been to bed since the panic about lying on his back and now doses in his rise and recliner so quite probably is also sleep deprived which we all know makes you feel generally crappy.

He doesn’t have a hospital bed although he does have a device that lifts the top end of the mattress up to help him sit up, would you say this is the same as what a hospital bed would offer him?

Claire xx

[Ellie]

Yes it does add up especially if it's worse lying down.

After his respiratory assessment you both should be prepared to hear that he'd benefit from using a non-invasive ventilator, (NIV) aka a BiPAP machine or a Nippy, which will help improve his breathing by taking some workload off his breathing muscles.

Of course it's his choice to use one or not and not everyone is suitable for a BiPAP, though most of us are.

If his appointment isn't soon, there's no harm trying to get an earlier one. I'm not trying to scare you but rather he's clearly uncomfortable at times.

In the immediate term for daytime episodes of panic, Lorazepam is great for a quick calming effect - his GP can advise or does he have an MND Nurse?

Using an extra pillow in bed may help at night or a hospital bed if he doesn't already have one.

Love Ellie.

[Spiersey]

Thanks Ellie

Hi Spiersey,

I wonder if these episodes are linked to his breathing becoming compromised? Has he had respiratory assessment recently?

As our breathing muscles weaken, we can't breathe deeply which can lead to feeling panicky, claustrophobic and a sense there “isn’t enough air” which may explain his anxiety regarding these situations...

Feelings of frustration are normal as we lose the ability to do tasks which even a baby can do, but I am sorry you’re bearing the brunt of your husband’s frustrations. As he has progressed rapidly, he must be very anxious about his and your future.

Many people with an MND take an antidepressant and they say it helps sleep too, so maybe that’s an option? As is counselling - is he linked into a hospice?

Unfortunately a significant percentage of us with ALS/MND will experience frontal lobe involvement, executive or non-executive impairment, which leads to behavioural and / or cognitive changes, sometimes subtle, other times more obvious. MND Clinics screen for any impairment.

I hope you get some vital “me time” - caring for someone with MND on your own is very intense and difficult.

Take care.

Love Ellie.

Thank you Ellie, your post offered me much reassurance. In fact everything you said made sense and it seems that he does indeed panic when his breathing is compromised. He is waiting for his breathing assessment which I hope will result in something to ease his distress when he experiences difficulty breathing. As a footnote it seems much worse when he is lying down.

He has already started taking Citalipram although it does not seem to have helped any.

We have had a much more relaxed day and it seems if I can keep him occupied as much as possible he is much calmer, perhaps its just A case of distracting his mind.

All the best xx

[Ellie]

Hi Spiersey,

I wonder if these episodes are linked to his breathing becoming compromised? Has he had respiratory assessment recently?

As our breathing muscles weaken, we can't breathe deeply which can lead to feeling panicky, claustrophobic and a sense there “isn’t enough air” which may explain his anxiety regarding these situations...

Feelings of frustration are normal as we lose the ability to do tasks which even a baby can do, but I am sorry you’re bearing the brunt of your husband’s frustrations. As he has progressed rapidly, he must be very anxious about his and your future.

Many people with an MND take an antidepressant and they say it helps sleep too, so maybe that’s an option? As is counselling - is he linked into a hospice?

Unfortunately a significant percentage of us with ALS/MND will experience frontal lobe involvement, executive or non-executive impairment, which leads to behavioural and / or cognitive changes, sometimes subtle, other times more obvious. MND Clinics screen for any impairment.

I hope you get some vital “me time” - caring for someone with MND on your own is very intense and difficult.

Take care.

Love Ellie.

Hi Iron Will

Happy Easter to you and your family. Your post was heartfelt to me, please remember you are not the cause of the situation you find yourself in MND is. Neither you or your wife asked for this, be kind and gentle on yourself your doing the best you can with the hand you were dealt.

God Bless

CCxox

[Sheila]

I have suffered from anxiety and panic attacks for years. So you can probably imagine how bad I have been since being diagnosed in January. Maybe the doctor can prescribe something for your husband to help, I take amitriptyline and diazepam. I have tried other tablets , but nothing seems to work. Or relaxing music and sounds, I know it is so difficult.

[Iron Will]

hi, all I can say is you are not alone, not often but I too "bark" at my wonderful wife, it's simply not something I would ever do prior to my illness. they always say you hurt the one you love, well its never more true than it is right now. I can only say sorry to her and try extra hard should I feel any form of frustration coming on, cause that's what it is. he loves you as I love my wife and its downright awful and unfair that here we are Easter Sunday, in blazing sunshine, sat indoors because today I am not too good. I want to take her out, see the hills, call for a beer just like everyone else. when you think about it as i'm the cause of all this you would think she would be barking at me lol, she never does bless her.

the only panic attack I have had was whilst waiting for diagnosis, since then the acceptance kicked in very quickly.

tell him from me I am in his corner on this.

[Spiersey]

Hi All,

My Hubby was diagnosed in Dec and his progression has been aggressive to say the least, he now cannot do anything for himself at all.

I have given up work to care for him and over the last couple of days he has been experiencing panic attacks and he has started to get particularly aggressive when he cannot get his own way or he has to wait for something. He says he feels claustrophobic and cannot have doors closed but this can even be in a large room??

He gets himself so worked up that he begins to hyperventilate and panics that he cannot breathe and then he shouts at those close to him. He says we are useless and we don’t care about him. When he calms down he apologises and recognises that he has been wrong but it is particularly upsetting for those around him. I understand that he is going through the worst possible emotions but does he think its easy for us to see him getting worse on a daily basis?

Has anyone else experienced this and is it a common factor with MND?

It feels so hopeless....