Hello!

[paulw]

Hello everyone.

I thought I´d just introduce myself to the forum. My name is Paul, I´m 63 and I live in Madrid with my wife and our 9 year old daughter.

It started in a familiar way last summer. Foot dragging, falls in the autumn and then a shocked physio sending me for my first EMG in January. I suspected the worst then but over the next few months (3 MRI scans, another EMG, lumbar puncture, innumerable blood tests) it was finally confirmed in June.

I can still walk on my own with the aid of a stick, my left leg is bad and the right is quickly catching up. My arms and hands are gradually going but luckily my voice and swallowing seem unaffected so far.

Taking it day by day and trying to remain as cheerful as I can. After all, what more can you do?

I´m on riluzole and anti-cramp medication.My question is "what now?". The consultants in the hospital want to see me every couple of months to check on my swallowing (and I suspect they secretly want to get tubes into me as soon as they can).

If I were in the UK I suspect Adult Social Services or someone would be helping me plan social care. Here, I don´t know what is available and need to know what to ask for to help lessen my wife´s inevitable burden.

Any suggestions gratefully received.

Paul

[denise]

Hi Paul

Nice to meet you and I love your positive attitude.

I don't know if there is a mnd association group in Madrid/Spain but I presume you've already googled that. Might be worth contacting them or mnd connect they might be able to advise you.

We came back from Portugal as I was extremely worried that our accommodation and equipment wouldn't be as available as it is here. It's not easy trying to decide what to do for best. You've got to think where your support chain is going to be for you and your family.

I hope someone else can come up with more thoughts than me.

Sending love and hugs
Xx

[Ellie]

paulw A warm welcome to the forum, Paul, a safe, supportive, informative and happy place, full of Lovely People (sometimes Lovely Loonies)

Voice banking is something you could do; have you a Speech and Language Therapist?

Love Ellie xx

[Christopher]

paulw Echoing all the comments above.

We are all here to support. Even I have come up with some useful suggestions.

I think group members have found the level of support and the way they go about it differs very much from place to place in the UK and therefore I presume Spain too.

All of a sudden I have had battalions of people working to help me. So Neuro Physio, Neuro OT, Speech Therapy etc. In my area they seem to co-ordinate from a health centre in the area. At present nothing to do with Social Services. That might be different for others.

They immediately put me on nutritional suppliments because of a 20 percent weight loss. I have seen it written in some places they will be considering tubes at 5 percent.

I am not tube fed. You will see there has been alot of chat about chocolate and which liquid suppliments are the best in the last few days (to try and keep weight on).

We have all had very different journeys.

I think I can say we all love Ellie

[JamesW]

Hi Paul and welcome to the forum 😊

[Zante]

paulw hello Paul and a warm welcome to the forum. I hope that you are managing and getting the support that you need.
With regards to living in Spain, I only have experience of a friend of my mum's, they lived in southern Spain and had their own business, she developed a serious long term condition( not mnd) and they had to sell up and return home to the UK because they were struggling with the level of care where they were and also needed the back up of family members. I would assume that the care varies from area to area, like here but it shouldnt vary.

[Claireflo]

Welcome to the forum paulw, sorry to hear about your diagnosis. I have no idea about the health care system in Spain but hope that you get the support to help you. This forum is a great font of knowledge, support and advice.

[AngieCanuck]

Hello Paul 👋☺️. Welcome to the forum.

[paulw]

Thank you everyone for your warm welcome. It's great to get so many responses so soon. Thank you!

As I put in my original post, I really need some tips for the things I'm going to need to plan for in terms of living at home. I'm getting good medical support here, even extending to offers of counselling and speech therapy (I wonder if that will improve my Spanish lol).

What would be really helpful is pointers for things like I´d get in the UK in terms of home assessments? What kind of things would social care cover in needs assessments? How do I go about choosing a wheelchair? Making home adjustments, getting a few hours home help, that kind of thing. I could then ask the relevant authorities here how to go about it.

There are MND associations here, but obviously it´s almost all in Spanish. It´s easier for me to ask people in the UK for your tips and advice.

Sorry to appear cheeky!

[Christopher]

paulw my speech therapist has concentrated more on eating and drinking. So you will see some chat from the last few days about that.

For example. I now sip with my head facing forward and then turn my head left and swallow.

It then goes down in one, rather than three pain full tries. For other people it will be turning to the right. Depending on which muscles are stronger.

Ellie Pointed out that dipping your chin helps too. So this is also the reason you use wider brimmed cups and glasses, so your head doesn't have to go back as far.

Then of course there are the liquid thickeners (everyone on the site know that I just use chocolate).

I have been falling over for nine years and started with crutches but due to strength issues I stopped using them. Went to a stick for short distances. Now use a walker for very short distances otherwise I would fall every five meters or so. Still trying to use my legs, so not using a wheelchair yet.

Everyone's progression is different. I will probably be dependant on a wheelchair in the next month as things are now accelerating.

Rest is one of the keys.

My GP told me not to talk a few months ago. My speech therapist last week said. Either put something in the washing machine or talk.

I haven't been drinking. Honest.

[Judyb]

👋 definitely do voice banking now, I used speak unique, my voice got worse in the last 3 months

[Heather R]

paulw welcome to the forum, do hope Madrid has good services for MND. With your legs being a bit affected, is your accommodation going to be suitable? In uk social services may help with cost of adaptations needed to your home (good to get these in advance of need, though difficult to predict how your illness will progress exactly). I think different local authorities differ in how generous they are with financial help towards these, but an assessment of your finances will be taken. Likewise with cost of home help and respite care if needed to give your wife a break from your care. Social care in this country is pretty dire, with successive governments promising to work out a proper plan to fund social care adequately. Because the services are under such strain and pay is so poor, i think the news recently reported one hundred and sixty thousand vacancies. So it’s often hard to find good help,
do hope the situation is better in spain. There is a somewhat arbitrary distinction here between what is labelled social care needs and what is health care (the former you have to pay for, and health is free). Best wishes for finding useful help x