Hi 👋

[Lisa M]

Hi just wanted to introduce myself and say hello. My husband was diagnosed in August 22 with limb onset MND which was a huge shock as I’m sure was for most of you too when you were told that news. My husband neck had already started to drop and he had the cramps and twitching already at this point. Since then his mobility has continued to decline and now only walk very slow with a help of a stick, his finding it increasingly harder to do even small things as the grip is his right hand has almost gone. So very hard watching the person you love suffer and I can’t imagine how he must be feeling 😢

[JamesW]

Hi Lisa, I’m so sorry that you find yourself here 😔

For me, the biggest challenge with MND is the progression and the constant coming to terms with something new that you no longer can do properly. I hope that you find companionship and comfort here for both you and your husband ❤️

James x

[Ellie]

Lisa M A warm welcome to the forum, Lisa, sorry you have cause to join us.

I am sure that it is very tough to watch the love of your life struggle - I hope you have good support from family and friends.

On a practical level: has your husband been seen by an OT? A neck brace might help him.

Love Ellie xx

[TinyLady]

Lisa M sorry to hear about your husband. I think it must be very hard to watch someone you love struggle. My husband is finding things very hard with me and juggling work and children too.

But love, patience and understanding will get you through the tough days. We are all here for support x

[Lisa M]

Hi Lisa, I’m so sorry that you find yourself here 😔

For me, the biggest challenge with MND is the progression and the constant coming to terms with something new that you no longer can do properly. I hope that you find companionship and comfort here for both you and your husband ❤️

James x

Thank you James

[Lisa M]

Lisa M A warm welcome to the forum, Lisa, sorry you have cause to join us.

I am sure that it is very tough to watch the love of your life struggle - I hope you have good support from family and friends.

On a practical level: has your husband been seen by an OT? A neck brace might help him.

Love Ellie xx

Hi Ellie

yes had the OT team out and they have been really good, they have given him 3 different types of collar’s but he prefers the soft one I bought him on Amazon 😀 x

[Lisa M]

Lisa M sorry to hear about your husband. I think it must be very hard to watch someone you love struggle. My husband is finding things very hard with me and juggling work and children too.

But love, patience and understanding will get you through the tough days. We are all here for support x

Thank you, yes it is hard with so much more to do but will cherish every moment we have now x

[Ellie]

... they have given him 3 different types of collar’s but he prefers the soft one I bought him on Amazon

Hang on to those other collars Lisa, one or all might come in handy at some stage.

[Zante]

Lisa M Hello Lisa, a warm welcome to the forum from me. You have certainly mastered the quotes and posts which took me forever! I am sorry to hear about your husband and his progression. I hope that you find the forum helpful and supportive with lots of advice and information. My physio actually said that the soft collars from amazon are often more comfortable in the earlier stages but that the harder provided ones tend to be better further down the line. I hope you are both managing as much as possible.x

[Arcadian]

Sorry to read your Husband has a diagnosis.
Hopefully resources and engagement with folk here will go some way to support with things.

[Lisa M]

Lisa M Hello Lisa, a warm welcome to the forum from me. You have certainly mastered the quotes and posts which took me forever! I am sorry to hear about your husband and his progression. I hope that you find the forum helpful and supportive with lots of advice and information. My physio actually said that the soft collars from amazon are often more comfortable in the earlier stages but that the harder provided ones tend to be better further down the line. I hope you are both managing as much as possible.x

Thank you yes talking each day as it comes 😀

[Lisa M]

Sorry to read your Husband has a diagnosis.
Hopefully resources and engagement with folk here will go some way to support with things.

Yes it will be easier to talk to people that understand where friends and family don’t really understand what your going through.

[Piglet]

Lisa M welcome to the forum although not where you want to be. It’s a very daunting time initially but the forum is here to help and support you whenever you need any advice. Hope you get all the professional support and accept it all. Xx

[Claireflo]

Welcome to the forum Lisa M sorry to hear of your husbands diagnosis.

I'm supporting my dad who was diagnosed with bulbar onset 20 months ago (a year after first symptoms). Its hard to see the progression over time and not be able to do anything to stop or prevent it. This forum is great for support and information

[Lisa M]

Lisa M welcome to the forum although not where you want to be. It’s a very daunting time initially but the forum is here to help and support you whenever you need any advice. Hope you get all the professional support and accept it all. Xx

Thank you 😊