Husband diagnosed on 16th January

[Wailywoo]

New to this forum....

Hubby was diagnosed, after several tests, as having MND. They are still doing several other tests to rule out anything else causing his troubles, but he seems to be getting worse and weaker by the day. The other tests are not until March and still waiting for MRI scan appointment. After that it is a wait for the results. Meanwhile just left to get on with it. Feeling a little abandoned and have questions that may not be answered for a couple of months.

The biggest problem is the swallowing liquid down the wrong way and not being able to get a breath behind it to cough properly. It is sooooo scary when this happens - like drowning - and was wondering if there was anything to do that would help when this happens?

Any ideas would be most welcome.

[Terry]

Hi Wailywoo and welcome to the forum;

Sorry to hear about your husbands diagnoses and it is a difficult one to accept.

He will be appointed a Speech and language therapist (SLT) that will look at him swallowing etc. In the mean time ask his doctor for some thickening for liquids.

I use Resource ThickenUp Clear 4x 125gram (Nestle health science) but there are other makes and types. Some are only suited for cold drinks and some do both hot and cold.

He might also well find it better to drink, fizzy, very cold, hot or very flavored drinks as they excite swallowing and you have a better idea where they are in your mouth.

It sound horrible but getting in touch with your local hospice would probably be very good for both of you as they have people and specialist there that could we help with symptoms and advise quicker than waiting for further tests etc. They also help you live life better.

Best wishes, Terry

[Lynne K]

Hi Wailywoo, welcome to the forum. I'm sorry about your husbands swallowing problem. I hope that you get professional on the case very soon. Sorry that I don't know enough about the swallowing issue to offer any suggestions. But Terry seems to have given you good advice. Lynne

[Ellie]

Hi Wailwoo and sorry you've had to join the Forum.

Sorry you've both been left hanging, so to speak.

An immediate way for your husband to start swallowing safer is if he tucks his chin into his neck when swallowing liquids.

It is easier to swallow sipfuls rather than mouthfuls of liquid and let him concentrate on swallowing - it's not the time to start chatting nor to tell jokes!!

And, as Terry said, he should see an SLT.

Love Ellie.

[shrew]

welcome , Wailwoo hope people with lots of experience can help you

[Wailywoo]

Thank you everyone, for your kind words and advice. We will certainly try everything.

Bless you all,

Wailywoo

[Kayleigh]

Hi Wailywoo,

I am sorry to hear of your husband's diagnosis.

Like your husband, I have also experienced problems with swallowing. I find that it really helps to sip drinks very slowly, because If I drink them as quickly as I used to, I often end up feeling like I am choking and I am gasping for breath. It also helps to eat food much more slowly as well. If your husband has difficulty swallowing food, it might be worth him trying softer/easier to swallow options, such as mashed potatoes instead of roast potatoes.

Hopefully your husband will not have to wait very long before he is assessed by a Speech and Language Therapist. Just in case you haven't seen it already, I have provided a link to the MNDA's information sheet about 'Swallowing difficulties':-

http://https://www.mndassociation.org/wp-content/uploads/2015/07/07a-swallowing-difficulties.pdf

There is also a useful eating and drinking guide, which includes tips and easy-to-swallow recipe suggestions:-

http://https://www.mndassociation.org/wp-content/uploads/Eating-and-drinking-with-MND-final-web-PDF-2017.pdf

Best wishes to you and your husband,
Kayleigh x

[Sheila]

Hi, I have recently been diagnosed with mnd. I sometimes have trouble with swallowing and mucus at back of throat. A nurse told me that pineapple juice helps. I have a appointment with speech therapist in 2 weeks time. Also a nurse from the hospice is coming tomorrow. So it's all happening quite fast for me now. I hope you and your husband get help soon.

Take care
Sheila

[Kayleigh]

Hi Sheila,

I had forgotten about the benefits of drinking pineapple juice - many thanks for posting about it yesterday.

It is good to hear that you are getting support from your local hospice. In my experience, the nurses are always very kind and understanding and they are passionate about wanting improve our quality of life.

It's good that there is also a speech therapist coming to see you soon. Hopefully you will also be supported by a dietitian, occupational therapist and physiotherapist - usually they try to stagger the appointments, so that we are not overwhelmed by a lot of information in one go.

I hope you and your family are managing ok.

Love Kayleigh x

[Wailywoo]

Hello everyone who has replied to my post.

I am so touched by all of the people who have had an input.

Shiela, thank you for your input. It made me think something had possibly gone wrong with hubbys care programme as you had appointments and we had heard nothing 5 weeks after his diagnosis. It prompted me to phone his coordinator which then highlighted that things had been overlooked with his care. We now have a nurse visiting on 5th March and the coordinator has put in motion an appointment with a SLT and Occupational Therapist (for his mobility), so each and every reply has made a difference. The pineapple juice we have been out and bought, so will be trying that.

Thank you also, Kayleigh for the links which I found most useful and have forwarded to hubby. Terry, also wanted to thank you for such a speedy reply, which made feel that I am not alone in this and can reach out for help.

Sending warmest wishes to you all.

Thank you ��

[Terry]

Hi Wallywoo;

Most of us have been in similar situations and know how hard it is to get your head around things. To get a quick informative reply does ease the situation a little and you don't feel so isolated.

Glad to hear that things are now getting sorted and don't be afraid to ask or try to push some of the services.

Love Terry

[Deb]

Welcome to the forum Wallywoo. I am so sorry for your husband's diagnosis.... It's such a shock for you both !

It's a pity that sometimes the professional support and care is not available until there is a formal diagnosis because the early days and extra tests are so scary so it is hard not to feel isolated. Well done for chasing it up.

I found the support from the MND nurse, physio and OT invaluable in the early days and now they are just a phone call or text away if I need advice or anything has changed. There is always practical and emotional support from the lovely people on this forum so you can reach out for help anytime.

Take Care and look after yourself too because its very hard for the partner .
Love Debbie x

[Sheila]

Thank you, I also heard red grape juice is good. But I have never tried that one. Yes the hospice nurse was very nice and help full. It is all very strange at the moment. Even a district nurse came into day . I have never seen so many people. A dietician is coming in 2 weeks time. I hope you and your family are well
love Sheila x

[Sheila]

Hi wailywoo, I am so pleased that things are now moving for you and your husband. This is a lovely forum and people have been so kind and helpful. I hope the pineapple juice helps, I also heard red grape juice is good.
Love to you and Terry. Hear from you soon.
Sheila x

[Kayleigh]

Hi Sheila,

I haven't tried red grape juice either - but am going to add it to my shopping list so that I can try it out. Following your helpful tip about the pineapple juice, I drank a small 200 ml carton of it today and even that small amount helped to clear my throat - it was very refreshing as well!

It can seem a bit daunting meeting so many new people. However, once you have met them all, hopefully you will find comfort in knowing you have a team of friendly professionals who will offer you ongoing help and support.

I hope you are able to be a bit less anxious about things. I am a worrier and so I understand how it's is not easy to control anxiety - but I find it helps to try and take one day at a time and to accept all the support that is available.

You have already settled in well into this forum family, with your very kind words of advice and support. Athough we would rather not have to be here, it is great that we support each other as much as we can. Your tip about pineapple juice has really helped me - and so thank you!

Hopefully you are eating and sleeping enough.

Love to you and your family,
Kayleigh x