Husband diagnosed March

[Vix123]

Hello everyone, I’ve been reading your posts for some time now, just plucked up the courage to post. Your such lovely people with so much information to help families along the way. My husband has been diagnosed with ALS after such a long road to get to where we are now. It started with falls, foot drop and diagnosis of stroke, on going for about 2years. Then we got a diagnosis at the start of March. The consultant said it was ALS progressive form. My husbands mobility is now very reduced only a few steps at a time with a frame. With do have a good comm nurse, physio and an Ot (who we have only seen twice). We have a multi dis meeting coming up. Not sure what to expect.
From what I’ve read Ellie seems to have loads of medical info ? Is there any thing I should ask at the meeting ? Is there different ALS ? It’s such a mind field. He has had his EMG I didn’t ask about the results. Do I need to ? Will they tell me anything?
Thanks for taking time to read this xx

[Doug Carpenter]

Hi Vix123

Welcome and thank you for posting.

I’m sorry you’ve had to join us, of course, but you’ve joined a marvelous community.

You’re right! Don’t bother to ring the Royal College of Neurologists – if there is one – just ask Ellie. This gorgeous lady is a phenomenal mine of information. And there is a wealth of knowledge throughout the forum, particularly when it comes to practical advice that will greatly help you and your husband live with MND.

About the meeting, and MND more generally – opinions vary, even amongst experts in neurodegenerative diseases, as to whether there are sub-types of MND/ALS or whether it should be thought of as a clinical syndrome caused by a number of discrete but overlapping biological processes.

One thing you should establish, if you haven’t been told already, is whether your husband has so-called sporadic MND or familial MND. About 90% of us have sporadic MND, which means it arises quite randomly, while a minority have MND caused by mutations in one of now more than thirty genes known to be associated with the fundamental disease-causing mechanisms – errors in RNA transcription resulting in mis-folded proteins ending up in the wrong place in motor neurone cells. Thus, you will hear people talk of SOD1 and C9orf72 sub-groups where MND is known to run in families.

It’s not so much the EMG results themselves you need to ask about, but what the consultant infers from them. At the moment it sounds as though it’s your husband’s legs that are the focus of symptoms. You could ask if the EMG shows any significant bulbar involvement.

There are always exceptions, but a generally common feature of MND is that it seems to progress at the rate at which it starts; there may even be static periods. But the rate of progression varies hugely between patients. Your husband’s condition is unique. From what you describe, after two years, he could be in the slow lane.

Our host here, the MNDA, is a fantastic organization too. Do get their factsheets that cover a wide range of topics. In many areas there are local MNDA branches that can offer all sorts of support and social activities.

Good luck Vix.

Big hug

Doug

[Terry]

Hi Vic and welcome to the forum ;

Sorry to hear about your husband's diagnosis and problems.

There are around eleven types of Mnd so it would probably be good to get it narrowed down a bit.

Write any questions and concerns down and it is good to go in with your husband or have someone with him to pick up what the specialists saying because you both remember different things.

A lot of your journey can depend on how your hubby approachs it.

Please feel free to ask any questions or share things with us.

Best wishes, Terry

[Gillette]

Hello Vix and welcome to the forum, although we are all sorry about your husband's diagnosis. Like you, it took me sometime to pluck up the courage to join.

Have you and your husband been invited to the multi-disciplinary meeting? I ask because I wasn't invited to mine and don't know if others on here have attended them. Either way, it would be a good idea to make a note of anything you and/or your husband would like to know - anything at all. (I find it helpful to have a hardback notebook, just for MND and related matters) to write everything down in. It makes it so much easier to keep track of things.

Does your husband have access to an MND Care Centre? Specialist nurses? You could ask what the various health professionals provide. Who will have day-to-day control of your care. Who you contact, in the first instance, when you need help. What referrals have already been made for your husband (I have been astounded by how many different teams there are!)

One important thing for your husband to consider is what is known as "voice banking". MND can affect the ability to speak. With voice banking, your husband would use an app (either Acapela or Model Talker) to record lots of sentences which are used to create an electronic voice for when it is needed. If you search on here for "voice banking" you will find more information. You should ask for a referral to a speech therapist and you can contact Richard Cave at the MND Association for more info and help.

Feel free to ask questions on the forum, also have a read of threads that relate to things you want to know. The search feature on here is very useful.

Good luck to you both on your MND journey. Remember that there is lots of knowledge and experience on this form and people are happy to share it. This is a great place for support.

Sending electronic hugs to you both.

[shrew]

Welcome Vix, my Husband was diagnosed 11months ago, they said ALS

[Ellie]

Hi Vix and a warm welcome to you both.

Sorry you’ve had to join us and I know how difficult it is to make that first post - it makes it so awfully real

Your husband does seem to be a relatively ‘slow progressor’, although it may not seem that way to either of you, being mobile, however compromised, after 2+ years is ‘good’. It sounds as if his legs are mostly affected for now?

No, I definitely don’t have any medical experience but (unfortunately!) have amassed too much knowledge over the last 12+ years, mostly through personal experience, but also through talking to, and asking many questions of, my doctors, nurses, researchers, OTs, physios etc

As for hubby’s upcoming multidisciplinary team (MDT) appt, you can expect to see some or all of; doctor, OT, physio, speech & language therapist (SLT), dietitian, respiratory, neuropsychologist. Because it’s his first MDT visit, they may want to get baseline measurements, so it may be a long stint in the clinic or they may make appts for him to do an SLT or respiratory assessment at a later stage, for example.

Vix, at the Clinic, be prepared to see people much further along in their progression than your husband is - it can be an overwhelming experience and, quite frankly, a shocking one too

Re what to ask: It’s up to you and your husband as to what detail of information you both want to know. And often the first MDT appt is so busy, it’s not always the best time to ask for lots of info - it’s hard enough to retain what’s said in the first place!! Don’t hesitate to ask questions though if anyone says something you don’t understand and don’t feel foolish if you need to take notes. Given his community OT mightn’t be great, make sure he sees the MDT OT on this visit and can she/he either provide suitable aids or liaise with the community OT to provide them?

And yes, as Terry said, it's always good to know if he is in an ALS 'subset' as it can make a difference - he is limb onset by what you've described.

EMG: You can ask for a copy of the summary, or even take a photo of it, it will help explain why your husband was diagnosed with ALS, in conjunction with the clinical tests he underwent. What it won’t do is give you any indication of future progression.

Please feel free to ask us questions.

Best wishes to you both.

Love Ellie.

[Deb]

Hi VIX 123 and a very warm welcome to our friendly forum.

I am so sorry for your husbands diagnosis, it's such a shock and there is such alot to take in.The early months are so overwhelming and I think I kept asking the same questions but everyone was so patient and understanding.

Well done for your first post on here because that is a big step. I won't add to the very sound advice you've had on here except to say this is the right place for practical help and emotional support . You can post as little or as often as you like and there is always someone to help or just to listen to a moan. People on here really understand.

Take Care and be gentle with yourself and with each other.
Love Debbie x

[Barry52]

Hello Vix123 and welcome to you and your husband.

You have had great medical advice from our forum family so far and when you have the meeting with the medical team you might want to ask about Commend which is a new service offered by several of the MND specialist clinics. It relates to Acceptance Therapy (ACT) and the clinics have qualified therapists who help deal with the coming to terms with the diagnosis. I know that they are currently recruiting patient involvement.

Whilst there are many practical things you will need advice on going forward I would use this forum for tips but I think you have other things on your mind at the moment.

Best wishes for the meeting.

Barry

[Vix123]

Thank you for your kind responses, there is a lot of information I can now take forward. Since March I have seen a steady descrease in his mobility arms and legs. I have to un/dress him everyday. I think I can hear signs of his voice changing to. It has been a long two years not knowing what the matter with him was. Things do seem to be moving quickly now.
We are very positive though and take each day at a time.
Thank you for all your pointers note pad and pens are ready. Thank you

[Terry]

Hi Vix;

I thought that there was so much information in the above posts that it scared you away.

Love Terry

[Lynne K]

Hi Vix, so sorry that you have had to join us with your husbands recent diagnosis. You have already had lots of good advice so I won't overload you with more. But I will say how important it is for your husband to do as Dina said to start voice banking as soon as possible while his voice is still dicernable. It's best, in my experience to speak with your husbands assigned Speech Therapist because some local services have preferences of which voice banking service you go with. I was told by mine that they prefer Model Talker and when those 1600 sentences or many more in my case it's downloaded to Predictable on an Ipad. My local services can later on provide eye gaze equipment and that uses the saved Model Talker voice. Don't worry about this now but definitely ask advice from the Speech Therapist. Taking care of yourself is very important. It's a challenging journey for both the person diagnosed with MND and their loved ones/carers. Good luck for the up and coming meeting. Lynne.

[Vix123]

Not at all Terry
Thank you all xx