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**Bern** · 12 February 2018, 08:35

Hi Tim,

It's a hard situation to be in.
Has the OT been to see you? It sounds like your wife needs a stair lift or through floor lift.
Also, I struggled with a shower over the bath and it was very scary. A wetroom might be the answer.
I know these are purely practical solutions and I know MND connect will point you in the right direction.
Take care,

Bern

**Guest** · 12 February 2018, 08:45

Thank you Bern
I think the CNS has spoken to west Berkshire council to come out and review the situation, we only have one hand rail going up the stairs too, so maybe they could do something there as well, all a worry though especially when she is on her own

**Barry52** · 12 February 2018, 09:09

Hi Tim,

The crying and mood swings is part of the disease symptoms and can be safely controlled with antidepressants prescribed by a GP. The description of the condition is emotional lability and I control it with citalopram. 2 stair rails are a must have and as Bern mentioned an OT will assess the safety issues in your home.

Best wishes,
Barry

**Guest** · 12 February 2018, 09:26

thank you Barry
wife only diagnosed in October and everything seems to have gone at an helter skelter pace, what with hospital appointments, doctors, cns , dietician, salt,, ect
she has been given some drops to take ( citalopram ), she also takes carbocistine and patches for her phlegm and drooling, and some other stuff called riluzole
she has lately been having trouble with swallowing solids, so drinks ensure, supplied by the abbot hospital, who also supply other things like syringes ect, everyone has been really helpful.
a lot of the time i just feel helpless and although the supports there i cant stop worrying about her when at work ( been very good so far, but i wonder how long the goodwill will last )

**Guest** · 12 February 2018, 10:05

my mam said she didn't want to cry she just couldn't control it ,sometimes she might laugh ,emotional lability doesn't just happen in motor neurone disease it can happen when you're extremely tired as well.
citalopram is a very mild antidepressant ,if you can ask her see if she thinks it works well enough ,the problem is it's only really made for a few months! so she may have to change onto something else.

**Guest** · 12 February 2018, 10:19

thanks streetwise, she laughs occasionally but its mainly tears and she was only recently given the citlopram so maybe it needs time to kick in properly

**MNDConnect** · 12 February 2018, 11:42

Hi Tim,

Have you mentioned the crying and mood swings to your wifes GP? They would be able to explore the cause for the emotions further and look into different medications to try to help manage these emotions. They may also be able to refer her to a local counsellor. We have an information sheet which explains about how someone's emotions may be affected by a diagnosis of MND, to access this please click here

I am glad to see that the CSN has made a referral to the local council to come out and do an assessment. It is really important that they are involved as they can look at your home and make recommendations about adaptations and equipment to ensure that it is safe for your wife. If you find that this referral takes a long time then please do let us know and we would be able to chase this for you.

Also, when your wife does see an Occupational Therapist (OT) it would be good to ask them about call alarm systems. This may help whilst you are at work as she could then make contact with you if there were any problems.

If you would like to discuss any of this in more depth then please do not hesitate to call us on 0808 802 6262. Our helpline is open Monday to Friday 9am to 5pm and 7pm to 10.30pm.

Best Wishes,

Adele

**Terry** · 12 February 2018, 13:59

Hi Tim

Like around a quarter of us suffer from Emotional Liability, I have problems with people being kind, sorry and loving, so your wife could well be similar. So hugging her, etc might well make her worse, but don't stop doing it. You might be able to make her laugh by being sarcastically nasty in a nice way, just blame me.

I found that that drug made a difference in a few days.

Like Mnda said, get some form of panic system, you can get some that will detect falls and raise the alarm automatically, and the company will ring you and others if you don't answer.

It would be good if your wife stayed down stairs if there’s no one with her.

The feeding tube takes a bit of getting used to but try not to worry about pushing it in a inch or turning it. Once it has been in a couple of months you should be able to pull it etc.

Does she have a RIG feeding tube, if so the balloon water should be changed weekly and that is best done by pushing it in a bit. There should be a specialist nurse that does it a couple of times to show you.

Love Terry

**Ellie** · 12 February 2018, 14:20

Hi Tim,

You've both got a lot going on, I'm sorry. I understand where you're both coming from.

If Mary is like I was, she is undoubtedly feeling terrified, scared, angry, guilty and hopeless at this early stage post-diagnosis. As well as a possible PBA (PseudoBulbar Affect) which exaggerates emotions - known as Emotional Lability, or (my favourite) Emotional Incontinence, Mary is trying to come to terms with her condition, prognosis and all it entails. Emotional Lability is a neurological condition, it's not due to tiredness.

Pushing you away is a self-defence mechanism -"if I alienate him, he won't love me, so he won't miss me when I die" - and most of us have done it at some stage in our post-diagnosis life. It's wrong of course, but seems rational at the time!

You're right to say the antidepressant will take time to work. I had 1-1 counselling and that, for me, was excellent.

And, don't forget to look after yourself Tim. Your physical and emotional well-being are equally important. It's good that you go out to work, albeit stressful atm worrying about what's happening at home. By Mary's stage, I had carers coming in and out during the day. I think Adele's advice is good.

And, don't worry about the feeding tube. Confidence with it will come with time and, if it doesn't, the nurses will do it. But it will - it is hard to get it wrong or to cause pain with it.

Love Ellie.

**Wife of Jim** · 12 February 2018, 16:20

My husband has bulbar and , he can't speak at all. He has a feeding tube too. He cried uncontrollably , The Dr. give him nuedextra and it has been a blessing .What y'all are both going through is overwhelming. The first month's are brutal , this disease s brutal.The right meds should help with her emotions. Best of luck.

**Guest** · 13 February 2018, 02:46

Thank you all.
Yes doctor knows about Mary's crying and mood swings, the specialist gave her some drops but they haven't as yet began to kick in, the CNS ,( in fact everybody ) , who see Mary have been a tremendous help and they all ask how I'm coping, my usual reply is " I have no option, I have got to cope " unfortunately we aren't blessed with a big bank balance and live week to week, I am struggling and pretty much exhausted most of the time. I have looked at the panic alarms, I tried talking Mary into having one but she refused on the grounds that we have no land line since switching to virgin media and she won't have it reconnected, she says our mobiles are sufficient for our needs, she can be very stubborn sometimes, and I hate arguing with her as it sets her off into a crying fit and her ( virtually none existent speech, becomes very aggressive ( all this I might add is totally out of character ).
The neighbours have my mobile just in case, but I still worry all the time about her and sometimes break off from my postal delivery to check on her and make sure she is taking her meds and the peg is all clean.
I can clean, flush and rotate the tube, but I come over queasy when I even watch it being pushed into her stomach, but I guess needs must and I will eventually be able to do this .
I know there is a lot of help out there and have been told to phone if I have any questions or concerns, but I feel like I'm imposing, even at work, and asking for time off for appointments I feel awkward, although this far royal mail have been very accommodating.
Thank you again for the help
Tim

**Terry** · 13 February 2018, 10:47

Hi Tim;

We have talked about "Emotional Liability" and under about 25% of Mnd people do get this. It is due to the Mnd affecting the frontal lob region of the brain that limits the emotions. about 1 or 2 % of Mnd people have more damage done to that area of the brain and that makes then very aggressive. So when you say "becomes very aggressive ( all this I might add is totally out of character )."

She could be just aggressive due to frustration etc but it does sound like a bit more than that and she might well need special drugs to control that before it gets out of hand.

Speak to her specialist about this as soon as practicable.

Love Terry

**MNDConnect** · 13 February 2018, 10:59

Hi Tim

Please do not feel like you are imposing by calling us here at MND Connect. We are here to support you and you are always very welcome to give us a call or email us if you have any questions or concerns.

Best Wishes

Rachel

**Guest** · 13 February 2018, 14:59

Thanks Terry
I will speak to him when I can, just busy at the moment with different appointments, just been to Newbury to see if Mary could go to the day care centre once a week, she goes for the first time next Thursday.
Not sure if it's just my imagination or I'm just noticing things differently, she was diagnosed last oct, she now writes nearly everything down or uses her Kindle app ( speak easy I think it's called ) , as her voice is difficult to decipher and her swallowing is getting worse, I hope it's my imagination, but I have my doubts .
Tim

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