Advice please

[Guest]

Hello - I am looking for some advice please or views on my Dads recent appointment. 6 weeks since his first appointment. Dad was Diagnosed prior to Xmas with Bulbar Onset 73 years of age. Strength of hands, arms and legs were good compared to first appointment. Peak cough flow was 430 in Jan and now 400. Slow vital capacity was 287 now 261. F.U.C now 62% was 60%. SNIP Jan 51 and now March 49. Dad has lost 7 ibs. They have discussed tube feeding but not yet for Dad. This 7 ibs lost is since been diagnosed and we feel his has lost up to 2 stone in the past year. He has lost his appetite and he is struggling to swallow. Speech is very poor. He has gone off fatty or high sugar food. To drink the calories drinks is a real struggle. No interest to eat at all and he has thrush on his tongue. 2 weeks of tablets will hopefully do the trick with the thrush and help his appetite. My dad is trying very hard and he has always been the person with control but it’s now so hard to get him to follow guidelines to help himself. He stops medication if he feels it’s not agreeing with him. This is the second attempt to deal with the thrush. It feels his stats haven’t changed too much which is good but the weight loss is a big issue. Please share any views is this what slow progression looks like .... many thanks

[Ellie]

Hi WS,

MND Connect don't work weekends so, rather than leave you unanswered, I'll give you something to keep you going until they reply.

If your dad has decided to have a feeding tube, contrary to what was discussed at Clinic, I think he should have the procedure soon. There are a few reasons for this: difficulty swallowing, weight loss, loss of apetite and decline in respiratory function.

Having a feeding tube gets around food apathy. Getting enough calories and hydration is very important. Meds can also be given through the tube.

Did anyone mention breathing support (aka NIV, BiPAP, Nippy) particularly at night? His FVC & SNIP suggest he'd benefit from using one - it just gives his breathing muscles a helping hand and gives extra energy by improving how he breathes.

I wonder if a part of the issue in not taking tablets is that he finds it difficult to swallow them? Many meds have alternatives, so if side effects are too onerous, there may be other options. (No alternatative to Riluzole though. If it doesn't suit him, it's not exactly a miracle drug so don't fret too much!!)

I am sorry your Dad has oral thrush and hopefully it'll soon clear up. That won't help his appetite either A hospice nurse advised me to take 1/3 or 1/4 of an effervescent Vitamin C tablet directly on my tongue everyday to keep my mouth healthy. Many of us take meds to reduce saliva production, so miss out on its oral -cleansing benefits. Of course one should only take vitamin C in that form if safe to do so.

Best wishes to you both.

Love Ellie.

[Ellie]

PS. It is very hard to say what fast or slow progression is after 6 weeks.

Progression tends not to be linear, but can go through phases of quite fast progression, followed by a calm period, before changing tack again.

Not answering your question I know, but unfortunately there is no straightforward answer…

[Terry]

Hi WS;

It does sound like your dad needs help in the form of what Ellie says. Getting one thing sorted will help with the others.

Love Terry

[nunhead_man]

Hi WS

If your dad has decided to have a feeding tube, contrary to what was discussed at Clinic, I think he should have the procedure soon. There are a few reasons for this: difficulty swallowing, weight loss, loss of appetite and decline in respiratory function.

In addition to this, is it has been dinned into me by my consultant that it is better to have the feeding tube procedure sooner rather than later, as the later it gets, the more likely you are to struggle with the operation, which of course requires a general anaesthetic with the hazards that brings.

Of course you can have the feeding tube put in, not use it until you need it and I am thinking that if and when when the time comes this will be a very useful insurance policy

My best wishes to you both.

Andy

[Ellie]

... the operation, which of course requires a general anaesthetic with the hazards that brings.

Hi Andy,

Sorry, I have to correct you...

Having a feeding tube procedure * is not * done under a general anaesthetic, but under light sedation. For those having a RIG procedure, some people don't even need sedation as there is no endoscope to swallow, unlike the PEG & PRG/PIG procedures.

Love Ellie.

[MNDConnect]

Hi Worried son

I’m sorry for the delay in a response from us. It looks as though you’ve received some excellent advice from the others.

If your dad would like a feeding tube, then I think it’s worth speaking to his healthcare team about this again. It is something that is often best to have done earlier rather than later and he doesn’t have to use it if he chooses not to.
As Ellie says, having a feeding tube can be helpful if someone really doesn’t feel like eating as they can get all their nutrients without needing to eat. Again, as Ellie says, it can also be really helpful if someone finds it difficult to take medications as a lot of medications can be prescribed in liquid form and put through the feeding tube rather than having to swallow them.

Does your dad get plenty of good mouth care? If someone isn’t eating much then thrush can be a common problem and it’s really important that they have good mouth care to try to prevent thrush and to make them feel more comfortable.

We produce information sheets on feeding tubes and mouth care which can be found here
Tube Feeding
Mouth Care

Progression in MND is so hard to measure as it’s a very individual disease. No two people will experience the same symptoms, in the same order or progressing at the same speed. For some people the symptoms may plateau whilst they won’t for someone else.
If you would like to talk to someone then please do give us a call on freephone 0808 802 6262. Sometimes it can be helpful just to talk through things with someone. We are also available via email at [email protected].

Best Wishes

Rachel
MND Connect Adviser

[MNDConnect]

Just a quick extra note...

Feeding tubes are usually fitted using light sedation and so do not require a general anaesthetic. The person is given sedation so that they are comfortable but understand what is happening. They usually then sleep for a few hours after the procedure and wake with little or no memory of the procedure.

[Guest]

Hi Ellie - many thanks for your reply and lots of useful information. Dad is on day 3 of trying to sort out his thrush and he is following the instruction of leaving his teeth out for two weeks and sterilize his drinking cups. Hopefully that will help with his appetite. It does feel he needs the feeding tube if his appetite doesn't return. He is still having breakfast, eggs and his main meal as he has done all of his life. Swallowing adds to the discomfort of having these meals. Where the real challenge is getting him to eat high calorie meals and food with lots of sugar, he just doesn't have the appetite for it.

Thank you x

[Guest]

Many thanks for your reply and very useful information x

[nunhead_man]

Hi Ellie

Having a feeding tube procedure * is not * done under a general anaesthetic, but under light sedation. For those having a RIG procedure, some people don't even need sedation as there is no endoscope to swallow, unlike the PEG & PRG/PIG procedures.Love Ellie.

Happy to be corrected so perhaps the advice I got about getting it done sooner rather than later is a little over the top?

Warmly

Andy

[Ellie]

Andy, you're a slow progressor, so the sooner rather than later advice isn's as relevant to you. Bulbar onset ALS and "typical" ALS are different - and yes, I know I used the word "typical"

Certainly at first signs of a weakening swallow (which can be very subtle), respiratory decline, weight loss or appetite apathy, alarm bells should sound for feeding tube insertion IF that is what you want.

The aim is to get a feeding tube BEFORE weight loss, BEFORE aspiration pneumonia due to poor swallow, BEFORE respiratory function declines too much making the procedure riskier, in general BEFORE the body's reserves are compromised too much which makes recovery much easier and quicker.

Of course people can have the feeding tube procedure after the above events - it just takes more time to recover and to get back to where they ought to be, especially with sustained weight loss.

I guess the trick is to know your body and recognise very early symptoms - not always easy when changes can be so subtle as to insidiously creep up on you

Love Ellie.

[Kayleigh]

Good afternoon Andy,

Further to Ellie's very informative post, you might also find the following 'Guide to PEG/RIG' useful:-

https://www.ouh.nhs.uk/services/departments/neurosciences/neurology/mnd/support/peg-rig.aspx

Best wishes
Kayleigh

[Kayleigh]

(Although some of the information in the NHS Guide is specifically for MND patients within the Oxford Hospitals Trust, it also contains a lot of general information/advice about PEGs and RIGs for MND patients).