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ALS - Carers UK Forum

ALS

For issues related to specific conditions and disabilities.

ALS

Hi - my husband has just been diagnosed with ALS, a form of MND. I feel like I'm awake in a nightmare.

We live in Spain so it isn't as easy to research what is available to us here. It can take up to two years to get a blue badge! Our neurologist is excellen, though, as is the hospital..

My husband, Nigel, is in the very early stages of this awful disease and we're just googling our way around it.
Hi Lesley ... some information for you :

Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) or Lou Gehrig's disease, is a specific disease that causes the death of neurons controlling voluntary muscles. ... ALS is characterized by stiff muscles, muscle twitching, and gradually worsening weakness due to muscles decreasing in size.


More information available from these UK sites :

National Institure of Neurological Disorders and Strokes :

https://www.ninds.nih.gov/Disorders/Pat ... Fact-Sheet

MND :

https://www.mndassociation.org/about-mnd/what-is-mnd/

Sheffield Research Centre for MND Care :

https://www.mndassociation.org/about-mnd/what-is-mnd/

MND Support group :

https://www.mndassociation.org/about-mnd/what-is-mnd/

Health Talk ... support groups :

http://www.healthtalk.org/peoples-exper ... others-mnd

More available if required.

As for Spanish sites , no results ... might be someone inside those links who could point out some to you ?

( Brit Ex Pats site ... Spain ... might be worthwhile joing and posting on there ... bound to be at least one good recommendation to be had ? https://britishexpats.com/forum/spain-75/ )


I trust they will prove useful ?
Hi Lesley,

My Gran is currently battling ALS- it really is like living in a waking nightmare, you're right.

The main bit of advice I can give you is to get equipment before it's needed- this disease can literally progress overnight. A lot of the time, it can be the case that equipment arrives and it's no longer useful because the disease has progressed further.

With regard to progression, every person with MND is different and the disease presents itself in different ways and at different speeds. For example, my Gran started with a case of Drop Foot in June/July 2018. She only started displaying other symptoms (tiredness, aching muscles, dysphagia) in February of this year. We finally got a diagnosis in March and, since then, her decline has been rapid. She's now completely bedbound, speech is almost completely incoherent, swallowing results in choking episodes and her left arm has started to atrophy.

Absolutely get in touch with the MND Association- I'm not sure what help you'll get in Spain, but here it works by region so some areas of the country have an MND Nurse and palliative team, other places have a palliative care team headed by an occupational therapist (we have the latter). They are your most crucial team- they will have seen everything before and they will know what's coming even before you do- definitely obtain as much knowledge from them as you can.

May I ask which area(s) your husband has been affected (i.e. limb onset or bulbar onset)?

I also want to extend my sincere sympathies for what is to come- you will need to be the strongest you've ever been in your life (please do feel free to PM me if you have any questions or if there's anything I can help with)
Thanks, both of you. It started about 5 months ago, with heaviness in his right leg. It was at exactly the same time he started Olmesartan (blood pressure tablets). His leg has got heavier and heavier and now his right arm is slightly weaker and his right eye is runny. The neurologist has started him on a course of meds, called Riluzol, which see said can sometimes help.

What I am dreading the most is watching him suffer, especially if he knows what's happening.
Your welcome , Lesley.

Riluzole ... full sp ... also contains a guide for carers :

https://bnf.nice.org.uk/drug/riluzole.html
Lesley_15101 wrote:
Fri Jul 12, 2019 9:58 am
The neurologist has started him on a course of meds, called Riluzol, which see said can sometimes help.

What I am dreading the most is watching him suffer, especially if he knows what's happening.
Hi Lesley,

Riluzole helps in the sense that it can prolong life for an average of 3 months (though, sometimes, it appears to have no effect on the rate of the progression of the disease- it's all individual).

Watching the suffering is definitely the hardest thing you'll go through- you will need strength you didn't know you had within you to be able to be there for your husband. I would certainly advise joining the MND group on facebook (if you use facebook, that is). It is an incredible resource of real-life information and the support is amazing- it will be a lifeline in the sense it can tell you what to expect and how to deal, practically, with certain issues that arise with the condition.

One thing I would suggest is absolutely do as much out-of-the-house stuff with hubby while you can- we were so worried for so long that my Gran had a slipped disc or something that we were terrified for her to walk around much in case we caused more damage (before diagnosis) and the rate of progression for us was so quick that we never got the chance to make any memories doing fun things together.