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Julip
19th December 2018, 13:32
My lovely husband was diagnosed with Bulbar onset MND 18 months ago. Symptoms began 2 years ago. He is experiencing increasing breathlessness at random time but it is worse at night. BiPAP helps a little but has no effect on Sats which are around 95 to 96%. I'm concerned that now might be the time for his just in case box of medication to be dispensed. Does this seem premature to you?

Terry
19th December 2018, 13:42
Hi Julip;

I'm not experienced with these maters but Sats of 96% are good. I do get moments of breathlessness at times of light stress etc. If he is anxious about things then Lorazepan might help.

Love Terry

MNDConnect
19th December 2018, 15:53
Hi Julip

Sats of 95-96% would be considered normal and are not worryingly low. Is you husband lying flat at night or is he sitting propped up? Has he had a recent respiratory assessment? If not and he's experiencing breathlessness then it might be worth contacting his respiratory team as it may be that the settings on the BiPap need adjusting.

It's really never too early to request a Just In Case Kit. The kit is for exactly what it says "just in case". You can have the kit in your house and never need to use it but it's there just in case you do. When someone becomes breathless it is common for them to feel panicked and this can then make it harder to breathe. Having a medication to calm someone down can be really helpful. Even if you never need to use the kit, it can be reassuring to know that it's there.

If the kit would be helpful, speak to your husband's GP. The GP should then contact us here on 0808 802 6262. We would then send the kit to the GP so that they can prescribe the medication for the kit and then they will give it to you and explain each medication.

Please do feel free to give us a call if you need to on 0808 802 6262 or email us at mndconnect@mndassociation.org

Best Wishes
Rachel
MND Connect Adviser

Ellie
19th December 2018, 16:59
Hi Julia,

Sorry to hear about Mike’s increasing breathlessness.

(I’ll presume his lungs have been checked and are clear.)

As Terry said, stress could be triggering the episodes. I know you say they’re random, but has he tried using his BiPAP for a while for daytime breathlessness? Sometimes eating/digesting or a change in sitting position can cause breathlessness, and even the simplest task/movement takes more exertion than you’d imagine!

Don’t expect the BiPAP to increase Mike’s Sats, that’s not its purpose - 95-96% is perfectly acceptable - but if you don’t think anxiety is an issue at night, the BiPAP settings may need tweaking.

Also consider his sleeping position - head raised? And mask - air leaks? Mask type - nasal, full face?

I think it’s a good idea for everyone to have the “Just in Case” meds to hand. In Mike’s case, it sounds like an ongoing issue, rather than an emergency situation? More BiPAP hours may be needed, his Respiratory Team or maybe the MND Nurse can advise.

Love Ellie.

Julip
19th December 2018, 21:03
I'm always amazed by the quality and volume of advice I get from this forum. Thank you so much for your help xx:)

Jaxx
19th December 2018, 21:43
We have not been told about this just in case kit.

Kayleigh
19th December 2018, 22:03
Hello Jaxx
I have not been told about the kit either - first I heard about it was on this thread today. I have found this info on MNDA website (says info is for professionals but that is only info I could find)
https://www.mndassociation.org/forprofessionals/mndmanagement/mnd-just-in-case-kit/

I would have thought that the kit is something that we should have automatically be informed about at some stage (by the MND nurse or other health professional) - or maybe it is something that is left to us to enquire about if we happen to read about it on this forum/MNDA website?

I have been thinking about your daughter, I hope she is managing OK. (I know that OK is probably the wrong word to use because MND can make every day a struggle or challenge. I just try to take one day at a time now and am doing the best I can to have a good Christmas with my family,)

Best wishes and thinking of you all,
Kayleigh x

Julip
20th December 2018, 09:58
I think there's a squeamishness in most health care professionals about end of life discussions. As a nurse working in the community I found it really difficult to get GP's to carry out anticipatory prescribing. They would rather wait for a crisis and react ,often poorly and frequently out-of-hours so the patient's own GP wasn't available.

Ellie
20th December 2018, 12:43
Hi Julia,

Just wondering if Mike has a Palliative Care Nurse and/or is linked into a hospice service?

I find these Nurses excellent and readily both discuss end of life care & meds with sensitivity and pragmatism.

I recommend everyone has contact with Palliative Services and they are NOT just for end of live care, but also for those living with conditions such as MND.

Love Ellie.

Kayleigh
20th December 2018, 14:48
Hi Julia and Ellie.

Many thanks to you both for your extremely helpful advice. I had not heard of the 'Just in Case' kit before yesterday, and it sounds like it may be something that I will need to request if I want it rather than something that will automatically be offered to me. I am grateful to you both for posting about this issue because it is debatable whether I would ever have known about the kit if I had not read about it here.

Thank you Julia for kindly sharing your experience. I will keep in mind that I am likely to have to request the kit if I want it, as I think it is unlikely that my GP is going to be pro-active in asking me if it is something that I want. I hope that your husband's breathing has improved and that he is feeling more comfortable today.

Ellie, thank you for the really useful information about hospices. I will take your advice and contact mine.

I hope that you both have a happy and peaceful Christmas. Love and best wishes to you and all your family.

Kayleigh xx

Jaxx
20th December 2018, 22:35
Thank you Kayleigh, I grieve for Jen not being able to read or sing to her baby hold his hand walking back from nursery and all the things young Mums do with their babies, her 9 yr old is struggling, we will have the best Christmas we can all the best to you and yours.

Kayleigh
21st December 2018, 00:22
Hello Jaxx,

I know, life can be so unfair and cruel. Please give Jen a hug from me - I am not as young as Jen and my son is not a baby any more, but I understand the painful sorrow and frustration that she probably feels when she can't do the things that she wants to do as a mum - my heart goes out to her. It is not easy, but we have to try soldiering on the best we can.

Jaxx, you sound like you are a very strong and wonderful lady, who provides immense support and care for Jen and all the family. I hope that you have someone to support you as well.

I can understand why Jen's daughter is so upset - it is such a lot for a little one to try and cope with and understand. Every day, I tell my son that I love him and that as a family we must all try to take one day at a time, but this situation is so tough on everyone.

For me Christmas is all about spending time with family. This cruel disease can snatch so much away, but I am going to grab hold of as many happy times with loved ones as I possibly can. I will do my best to make some happy memories and I am sure that I will still enjoy watching my son open his gifts, as I have always done.


I hope that all of you, and especially Jen's children, have many happy and precious times together this Christmas. Hopefully, Jen's little ones are looking forward to Christmas Day - and there is nothing like seeing the joy on little children's faces when they see what Santa has bought them!

Love to you all,
Kayleigh x

Jaxx
22nd December 2018, 19:27
Kayleigh thank you for your comments my husband and I are going to stay over on Christmas Eve so I can guarantee she will be in the living room when the children walk in, seeing your children’s faces as they walk in the room is priceless and I will make it my business to make sure she does not miss this, I have support from my siblings and their partners and my work family as I’m managing to work 2 days to have a bit of normality. I hope you and yours manage a happy Christmas and all the best for 2019. X

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