Mum with PBP

[Guest]

Hi, my name's Ben. I'm 30 years old with a 1 year old baby. I live in Spain but my Mum lives in UK. I found out on Sunday that she has PBP. I'm trying to get over the shock still as shes only 56 and I had imagined she would be in our lives for many years to come. I had already known about MND as my uncle died of the ALS type 15 years ago.

I'm joining this forum to exchange experiences even though I'm not sure even that's the best idea as its all so painful. I guess I'm just a bit lost at the moment and trying to reach out to people in any way possible. I've got my son's first birthday party Saturday and then I've got next week off work to see my Mum, sister and Dad. It's going to break my heart and at the same time I'm worried I'll get ill while I've got my family and work responsibilities here.

I just want to find a way to make the coming months enjoyable for Mum but I'm so scared.

[pete]

Hi Ben,
Welcome to the forum, sorry to hear about your mum ,and age is no barrier I am afraid to say, it seems more and more much younger folk are getting MND in one form or another, you may like to talk to one of the staff on our connect helpline they are very experienced in all the things your mum may need in the future, that said you have a wide variety of first hand knowledge of those affected and those angels who care for us ,so ask whatever you want, I am certain there will be one or more who will be able to help. I know it's difficult for you being in Spain, but it's not a million miles away and being here will not alter things ,so don't blame yourself ,it just life !!.
Hope the birthday party goes well ,loads of pictures for mom to look at .

Pete

[ccvsd]

Hello Ben,

Sorry to hear about your mum. Whilst MND is a pretty big problem to face, you need to make sure it doesn't take over everything. It probably will be emotional when you see your mum at first, but I'm sure you will both be fine soon after and will give each other strength and make some special memories.

I've just turned 41 and have als. It's tough but with family and friends, we distract each other from focussing on the MND and generally have a happy time. Phone calls from Spain would probably be a big help for your mum.

As Pete said, I hope you enjoy your little one's birthday

Caroline

[Terry]

Welcome Ben;

Sorry you find yourself here but there are people on this forum in a similar situation.

You can contact Mnda connect for support as well.

Regards Terry

[Ben251183]

Thanks for your responses. The courage of all these people on the fórum gives me some strength too. I will definately try the helpline. I'll be going to the UK at least 3 times over the next 5 months and my Mum's still coming over here at Easter. It's not knowing how quickly it will progress is the problem when planning things. I want to take her to Wimbledon this summer but I'm not sure if she'll be able to. At the momento its just the slurring and she can only swallow wet foods.

[ccvsd]

I think Wimbledon might be worth booking. It helps to have something to aim for, even if you need to modify plans and take a wheelchair.

We wanted to see London Wasps a couple of weeks ago. There weren't any disabled tickets on sale so hubby enquired. The chap said his friend had an exec box and he would ask if he could help out. So we joined this friend in their box, they made us and our children very welcome. I could warm up inside at half time.

My point is, book these things, tell people about your mum's situation and people help you to find a way to achieve it and are understanding if things change.

[AP1978]

Hi Ben, welcome to the forum. I hope you get some comfort in joining this. You will get some very good advice on here. I'm so sorry about your mums diagnosis, as other people have said, still plan things to do with your mum in the future and cross the bridge when it comes to it. It may be that your mum is still at the same stage as she is now, her symptoms may not deteriorate for a while, everyone who has mnd are so different. When someone close is diagnosed, its the worst feeling ever but you will find a way to have lots of happy times with your mum and make lots of memories with her and your baby. Lots of love Annette x

[Ben251183]

I rang Mum this morning. Her voice is noticably worse and she continues to lose weight. I managed to keep it together during the conversation and she was fine herself up until she said to give Carlos (my son) a birthday kiss. I can't bare to imagine her being on her own at home and suffering. She wasn't expecting me to mention going to Wimbledon so she really liked that idea at least. Shes handing in her resignation from work today but is going to the Beaver Fun Day at the weekend as shes a leader.

[AP1978]

I understand your emotion with the mention of your son, I only have to look at my kids and think of my amazing mum, I get so upset. Has anyone mentioned to your mum regarding peg/rig feed? Its really important to try and maintain a steady weight, if she's struggling with her eating it might be worth discussing this with a professional x

[Ben251183]

I see how shes managing to eat when I'm there next week. She says its down to stress. I'm going to buy her a stack of comedy DVDs next week to help keep her spirits up!

[ccvsd]

That's a lovely idea. She does need to keep her weight up, as Annette said. Does she like cream cakes?

[Ben251183]

We ve already been watching Michael McIntyre and shes been laughing. Shes still a lot of the time like her own self but Im worried how she react to her voice going. She was embarrased enough by a choking episode in the restaurant. She had a little cry with me yesterday but she needs to open up more.

[Ben251183]

And Im forcing lindt chocolates onto her, porridge for breakfast and suggested putting extra sugar into her tea. Mars Milkshakes too.

[Guest]

Hi Ben,
I am Rajesh from India, am also an MND patient for the last 30 years, stillam very strong. Now am 50 years, am doing ayurveda treatment and meditation. I hope these too help me to prevent or slowdown the disease . any way am very happy to know about your mom.
Thank you
Rajesh