My First Post

[Andy Ritchie]

Hi All,

This is my first time on the forum.

I was diagnosed with MND in February 2020, at which stage I was very fit and fully active, only noticing a weakening in my left hand.

The weakening since then In my arms and legs has been far faster than I expected - I guess this is wont be the first time you’ve heard this. Today, at 6 months on I’m rapidly losing the strength in all limbs, have an electric wheelchair, rising chair and hospital bed in the house. We are currently having a toilet and shower installed downstairs in the house so that I will not need to get upstairs from next week.

Fortunately my speech and swallowing are ok at the moment, but my breathing overnight has become shallow, causing headaches and lack of sleep.

My wife and family have been very supportive, as have the OT and MND team at Salford Royal.

However, we feel the deterioration is happening rapidly and we are looking at getting help and a Carer - any thoughts or advice on how to start with appropriate care welcome.

Thanks

Andy

[Ellie]

Hi Andy and a warm welcome to the Forum.

My ALS/MND also started in my left hand!

If your overnight breathing is causing you headaches and poor quality sleep, non-invasive ventilation (NIV, also known as BiPAP, Nippy) will help. If you don't have one yet and are interested, you should contact your MND Clinic or Nurse and get the ball rolling on that.

In the meantime or if you have decided against interventions, try sleeping with an extra pillow or two - breathing is generally more laboured the flatter you are - and make sure your room is well ventilated.

The thing about MND is to preserve your energy for enjoyable things so, if having a carer help you shower and dress leaves you with more fuel in the tank to face the day, for me that's worth it. I guess you know what tasks exhaust you and if you get help for those tasks, you can take it from there. For sure it's strange to awful having strangers wash and dress you in the beginning but, hey ho, you get used to it!! I look forward to my carers coming in every day and hearing the gossip 😁

Take care.

Love Ellie.

[Barry52]

Hello Andy and welcome from me to our forum family.

I have a slow version of MND but I am now getting to the stage of considering care so I will be interested in what our friends have to say about this. As our wise warrior Ellie says you need to conserve energy to cope with the daily challenges.

Best wishes,
Barry

[nunhead_man]

Good morning Andy and welcome to the forum,

With Ellie that makes three of us who started with left hand arm onset.

I'm not at the stage yet where I need carers but I do need my wife's help for certain tasks and need to be careful that I do not overstep, despite the fact that my walking is reasonably okay at the moment.

Finding a carer is a challenge as I'm discovering looking after my mother who broke her hip about 10 weeks ago. My brother is leading on organising my mother's care and began by looking at financial position as to whether my mother needed to contribute to the cost of care or not and found that she has a little too much money available to get the service for free. Although my mother, following her discharge from hospital, was entitled to 6 weeks care free of charge whatever her circumstances.

That gave us experience of one carers providing organisation and my brother went on to the CQC website to look for others that operated in the area and considered their rating and their costs. In the end, my mother has recovered remarkably well at the age of 92 going on 93 and so at the end of the six weeks we have been able to reduce the amount of care and in fact ended up with the person who used to help mum with her shopping coming in once a day to help with basic tasks including helping my mother take a shower and supervising her doing the exercises the physio is allowing her to do given the state of her recovery.

Our experience of the carers was reasonable in that they would generally do what they were asked to do provided they were mandated by their management to do it - For example in the early days they were supposed to make mum breakfast which was okay until we found one carer did not know how to make porridge!

For ourselves we may have an advantage in that given we run a business and have PAYE set up we may be able to employ our own carer directly once we need one if indeed we can find the right person or people. This will mean a cheaper service for us and more money for the carer as the care agency will not be taking a cut.

I hope this helps you in some way?

[Deb]

Hi Andy,

I just wanted to say a warm welcome to the forum from me. I am so sorry for your diagnosis and that your progression seems fast but glad you have good support from your family and the MND team.

Ellie's advice about preserving energy for good things is spot on ! When I was first diagnosed the physio advised me to make life as easy and safe as possible and put adjustments in place so I could save my energy for things I really wanted to do. Supermarket shopping was the first thing to go !

It may seem obvious but do take care not to fall in this time of adjustments... I speak from experience of not wanting to " give in " and use a wheelchair full time.

Take Care and good luck with getting carers,
Love Debbie x

[richard]

Andy
I am also a newby and just want to say Welcome. Alas I cannot help you with yoiur queries but there are plenty on the Fourm who will be able to provide advice.
Wishing yoiu peace and comfort
Richard

[Lynne K]

Hi Andy, welcome to another Salford Royal patient. They are all fab’ aren’t they. My online clinic appointment is next Wednesday afternoon. I’m under Miss A C (I’m avoiding using her full name for her privacy). I’m weary this evening so just a short message. Keep safe, Lynne

[matthew55]

Look on the bright side. Mine started with my voice. Now nearly 9 months later I discovered that I can't have a breathing aid because my mouth is almost 100% necrotic. Happy Days! 😊 x

[Ellie]

What?? Explain about your mouth please and how it prevents you using NIV (presume that's the "breathing aid"?)

[matthew55]

I had a video conference with my neuro and MND nurse and the main thing I took from it was the neuro telling me that as my tounge and mouth at at the end stage then breathing aids just won't work, even better that my breathing muscles are in the same place as my swallowing muscles. Basically my MND will kill me long before I need a wheelchair. I've got the quick version. 😊 x

[Ellie]

Hmm, how odd 🤔 Sorry to hear that.

My tongue doesn't move, my lips have very little movement, my lower jaw is slack and hangs (I look like this on a good day 🥴) I use NIV.

I don't understand about the breathing muscles - how can the intercostals move if they're attached to your ribs? The other muscles involved in breathing are the diaphragm, which is under the lungs, and the stomach muscles - I'm obvs missing something, aren't I. (no smart comments!)

If you can't use NIV, that is one decision you won't have to make as it's been taken out of your hands... Any idea how your lung function is atm?

Love Ellie.

[matthew55]

So far my breathing is normal. I'm really not bothered as the only thing I fear is no hands not no lungs! 😀x