DAD - MND diagnosed now. What next?

[Ellie]

Positive vibes Yes, the cheap as chips white vinegar is the one, the own brand stuff - rinse well after its use!

I steep everything in Milton, but that's not saying your dad should too.

Just wondering if those cleaning instructions are the manufacturer's or the hospital's - if you didn't get a user manual for the neb, it'll be online. Maybe it does need very hot water, IDK. xx

[Positive vibes]

Ellie

Hello Ellie

It's typed up sheets from the hospital itself, not the manufacturer's handbook, which is why I am asking the respiratory dept to check... No handbook included unfortunately which is why we are guessing on the actual materials.

Really good tip to look for the manual on-line. Why didn't I think of that? Doh....

Had my second vaccination at last yesterday, really wiped out today, crashed into bed at 9, up at 4am, back in bed and slept until 7am. Unheard of for me. Really feel like crawling back into bed now.... but need to chase GP for ampoules on repeat prescription for Dad.

Mum is complaining of ear pain - possible ear infection, so need to book her in too... ttfn...

[Positive vibes]

Ellie

Found the manual on-line, thank you very much for that tip, Ellie xxx

Downloaded as a PDF & saved.

Cleaning does say use 'hot water and dishwashing detergent' for the mask and baffle parts, and air dry, store in air-tight container. Not 'very hot', so will talk to hospital and check with them.

But, it also says use white vinegar and water at end of day's use (1 part vinegar, 3 parts water). Not Milton's once a week.... I think I will advise Dad & Mum to do both as a 'belt and braces' approach.... fiddly but worth it as prevention so no mould or bacteria growth. I think that's vital with the risk of pandemic, never mind anything else! Especially since Dad & Mum have numerous visitors (medical and family). Thank goodness we are all 'jabbed' now....

[Ellie]

Vinegar and water solution is more to prevent a build up of limescale in this case, Milton is to sterilise and act as a fungicide (of particular importance when equipment is used for inhalation)

I also use that 1:3 ratio too, 15mins, rinse very well.

[Positive vibes]

Vinegar and water solution is more to prevent a build up of limescale in this case, Milton is to sterilise and act as a fungicide (of particular importance when equipment is used for inhalation)

I also use that 1:3 ratio too, 15mins, rinse very well.

Cheers for that Ellie. Must remember the rinse, else, he will feel like he is inhaling a fish and chip shop....!

[Positive vibes]

Another day, another update:

Had speech therapist via laptop. Conclusion. Cannot do assessment on laptop! She wants to check Dad's swallow reflex, etc. so we will see her in a fortnight. He is getting a free iPad to use to synthesise speech, for use 'just in case', or 'when he's tired' as we mentioned him having to repetitively remind Mum a lot due to her Alzheimer's diagnosis. I said we may need semaphore due to their deafness, at this rate, and could they have the biggest screen possible due to Mum's cataract's.... got the giggles because the therapist was trying not to giggle and keep her face straight too! Ha! Just trying to make light of it for Dad's sake, as he was a bit reluctant with new technology, so I said we would help him with it.


Finally got a number from the speech therapist, to ring the dietician, as no sign of them despite urgent referral. I don't know what went wrong, but, somehow the referral wasn't referred right? She rang whilst nurse was there, and we still haven't got to the bottom of it. Anyway, still have to wait nearly 3 weeks for dietician, but it is all slowly coming together now.

Physio is being re-referred (said they won't do sessions with Dad, until sessions at LOROS finished, in 16 (now 10) weeks!). Visit from nurse yesterday, showed Dad is progressing faster than we had hoped, and she feels the physio and OT need to assess him at home for suitable equipment/adaptations.

He let us know that he is finding it hard to get off the loo now, legs are weakening, still driving, food more problematic. Still having to remind him to add lacto-free dairy to meal, and to 'drink calories' i.e. juice, or lacto-free milk rather than water. He admitted the mucus problem is causing him to lose his sense of taste, or, leaving an unpleasant taste in his mouth, which is starting to affect appetite.

Nurse getting meds from GP to help with mucus problem - as this is still waking him.

Cutting his nails & filing again today, and when brother rang, I was bantering that the cherry red nail polish would be next!

Mum upset/angry as she had accidentally cut Dad whilst trying to do his nails for him. Managed to distract her, took her to get a bit of shopping, and she cheered up thankfully. Bought Dad more chocolate - getting him the small bags of bite-size chocs rather than choc bar, as I noticed he is struggling to 'snap' a square off now...

A lovely neighbour is keeping a discreet eye on Dad walking the dog, who knows his condition, and just 'happens' to be walking her dog at the time Dad goes out on his own. Shhhh. Don't tell him.... He gets irate if we suggest walking with him. So its a huge relief as I keep having nightmares of him face down chomping pavement with dog running off, unable to use his fingers to ring us, and stranded. I notice he prefers ringing on the mobile now, as its on speed dial, rather than texting...

Needs new phones so bedrooms will be connected too...

[Ellie]

Has your dad a raised seat on his loo? If not, it's 20-ish quid well spent for an extra 10-15cm height, making it easier to stand up from the loo. If you want to spend more whilst waiting for the OT assessment, see if you think a side frame for the loo is useful, they are basically grab bars.

Ideally, his nurse would ring his OT and get a seat riser for him immediately, it's a very basic item. xx

[Positive vibes]

Has your dad a raised seat on his loo? If not, it's 20-ish quid well spent for an extra 10-15cm height, making it easier to stand up from the loo. If you want to spend more whilst waiting for the OT assessment, see if you think a side frame for the loo is useful, they are basically grab bars.

Ideally, his nurse would ring his OT and get a seat riser for him immediately, it's a very basic item. xx

Thank you Ellie. He doesn't have a raised seat, but, he is trying to raise himself off by using hands on the edge of the seat whilst he is still sitting, so not ideal.

I think I will nip out and get a side frame + riser as all the medical specialists seem to be too busy (physio was glad to un-refer Dad as 'they were inundated').

He still hasn't remembered to ask us to swop out the armchair he uses (foam seat gone flat from years of use), to the 'guest' armchair that's higher, as it's basically rarely sat on. Another little job to sort....

[Positive vibes]

Another day in the land of chaos:

Changed armchairs - done - Dad now has the firmer one so he sits higher and easier to get up.

Went shopping for replacement wardrobes as parents arguing what to get. - 3 hours later no solution.

Forgot paper for Dad - now done. He has changed from walking to get paper daily, to driving to get it, to now getting it delivered.

Met friend for catch up. Done and great for venting (mutually).

Got Carbocisteine meds for Dad, after MND nurse referral, and endlessly trying phone/on-line to GP (no service), and arguing with GP that nurse did request this Wednesday. Final face to face visit with GP reception and phone call from GP. Opened meds. These were capsules not liquid like nurse requested. I should have checked. Dad trying these in meantime.

Argh.... bangs head on wall.

Another phone appt booked for Thursday - to get new meds ordered in quantity (Carbocisteine - liquid and saline ampoules for nebuliser) on monthly, rather than weekly, basis, as they won't become repeat prescriptions until he's had them 6 months. Otherwise I will be asking for these every week for 6 months.

Lies down in darkened room.

Dog, after settling down, does spectacular poop fountain from rear end at 4am in the garden, no feed today. Habitually eats revolting things from floor outside. 24 hour fast usually resolves this.... ergh. At least it isn't on the carpet this time.

Mum - arguing with Dad as she wants to buy Xmas tree. He was trying in vain to explain its the wrong time of year to get one. Placated her by saying lets look on-line and see it they are available/to order.

Have possible solution to wardrobe disagreement. They have a long, running narrow worktop - running straight along one wall of bedroom, could be ideal for putting huge clothes rail underneath. No excess weight in the attic room. Uses space underneath that would be wasted. Could use upright bar supports for weight of clothes at regular intervals. Mum always bags clothes individually anyway (moth/insect phobia). Wouldn't effect where she decides to put bed (2 options). Could still have another small wardrobe on one wall for longer items (dresses, coats). Under consideration....

Contacted insurer's with final invoice for carpet, scanned and sent, acknowledged and compensation (last of it) on the way! Done and done and done thank you God....

File above. To do.

Visit from brother & missus. Leaving his favourite cake. Concerned phone call later that Dad can't eat it, and he's very downcast. The dry crumbly texture has defeated him. A quick chat with bro and custard being the solution. I have soya carton in my cupboard, so, the plan is to mix the cake in hot custard, and he can happily spoon this in. Chatted to Dad, who felt pleased with this idea, and then Mum happened. She has thrown it away. Oops. She said because he can't eat it, and she doesn't eat sweet things (apart from her ice cream addiction), and I am vegan there wasn't any point keeping it. And that she can't understand why he can't eat cake, but, will eat the small apple pies from a certain Mr K. Dad then says he is struggling with those too. Custard is on its way today with me, with mushed apple pie instead of cake...! To do...

Solicitors visit - LPOA now signed and updated for both parents (sent off to bro's). Big relief. Done.

Great news that nursie got a cancellation for Dad with Dietician for tomorrow. Fantastic! I thought we were stuck with the appointment in 3 weeks. Also OT coming and bringing toilet frame next week. Dad had refused to let me buy a raised toilet seat or frame. Things are happening apace....

Off to take the poop-tackular squirting hound out for walkies, then to parents....

[PeterPan]

So sorry that you've got so many issues to deal with... Just one thought though - the MNDA supplied me (free of charge) with an Accora Configura electrically operated rise and recline chair. Not the prettiest piece of furniture, but amazingly comfortable giving great head and neck support. It rises to the point where I'm practically standing, so it's really easy to get in and out. The process involved a request from my OT to the MNDA with a special form. Three weeks later a brand new chair arrived, purpose designed for people living with MND.

[matthew55]

Positive vibes it sounds like you need a carer. 😂😀😁😍xx

[Positive vibes]

So sorry that you've got so many issues to deal with... Just one thought though - the MNDA supplied me (free of charge) with an Accora Configura electrically operated rise and recline chair. Not the prettiest piece of furniture, but amazingly comfortable giving great head and neck support. It rises to the point where I'm practically standing, so it's really easy to get in and out. The process involved a request from my OT to the MNDA with a special form. Three weeks later a brand new chair arrived, purpose designed for people living with MND.

Hello PeterPan

We are working on Dad. Nursie says she can get one to him in 2 weeks, but, he is resisting this at the moment. It sounds fantastic. I think there are times when he feels that accepting an adaptation is a symbol of what he can't do for himself anymore. And a massive chair is something that is a huge visual reminder. So he goes to the default 'no'. I am hoping the home visit from OT or physio will tip the balance into accepting more things like this.

[Positive vibes]

Positive vibes it sounds like you need a carer. 😂😀😁😍xx

Ha! As long as I have my darkened room to lie down in, with cool flannel, and something cool and fizzing by my side, I will be ok.... Even if the cool fizzing is Alkaseltzer....

I have my virtual hugs from yourself too, of course, and everyone else...

[Ellie]

Positive vibes Great news re earlier appt with Dietitian.

You may need to banish all cakes from the house 😪 even with a custard-type topping, those pesky crumbs have a way of escaping and causing trouble, which I know from personal experience...

I eat those chilled individual desserts, mousse and smooth puddings, which are really easy for me to swallow. You know the desserts? Aero, Rolo, Cadbury's Pots of Joy etc. xx

[Lynne K]

Another day in the land of chaos:

Changed armchairs - done - Dad now has the firmer one so he sits higher and easier to get up.

Went shopping for replacement wardrobes as parents arguing what to get. - 3 hours later no solution.

Forgot paper for Dad - now done. He has changed from walking to get paper daily, to driving to get it, to now getting it delivered.

Met friend for catch up. Done and great for venting (mutually).

Got Carbocisteine meds for Dad, after MND nurse referral, and endlessly trying phone/on-line to GP (no service), and arguing with GP that nurse did request this Wednesday. Final face to face visit with GP reception and phone call from GP. Opened meds. These were capsules not liquid like nurse requested. I should have checked. Dad trying these in meantime.

Argh.... bangs head on wall.

Another phone appt booked for Thursday - to get new meds ordered in quantity (Carbocisteine - liquid and saline ampoules for nebuliser) on monthly, rather than weekly, basis, as they won't become repeat prescriptions until he's had them 6 months. Otherwise I will be asking for these every week for 6 months.

Lies down in darkened room.

Dog, after settling down, does spectacular poop fountain from rear end at 4am in the garden, no feed today. Habitually eats revolting things from floor outside. 24 hour fast usually resolves this.... ergh. At least it isn't on the carpet this time.

Mum - arguing with Dad as she wants to buy Xmas tree. He was trying in vain to explain its the wrong time of year to get one. Placated her by saying lets look on-line and see it they are available/to order.

Have possible solution to wardrobe disagreement. They have a long, running narrow worktop - running straight along one wall of bedroom, could be ideal for putting huge clothes rail underneath. No excess weight in the attic room. Uses space underneath that would be wasted. Could use upright bar supports for weight of clothes at regular intervals. Mum always bags clothes individually anyway (moth/insect phobia). Wouldn't effect where she decides to put bed (2 options). Could still have another small wardrobe on one wall for longer items (dresses, coats). Under consideration....

Contacted insurer's with final invoice for carpet, scanned and sent, acknowledged and compensation (last of it) on the way! Done and done and done thank you God....

File above. To do.

Visit from brother & missus. Leaving his favourite cake. Concerned phone call later that Dad can't eat it, and he's very downcast. The dry crumbly texture has defeated him. A quick chat with bro and custard being the solution. I have soya carton in my cupboard, so, the plan is to mix the cake in hot custard, and he can happily spoon this in. Chatted to Dad, who felt pleased with this idea, and then Mum happened. She has thrown it away. Oops. She said because he can't eat it, and she doesn't eat sweet things (apart from her ice cream addiction), and I am vegan there wasn't any point keeping it. And that she can't understand why he can't eat cake, but, will eat the small apple pies from a certain Mr K. Dad then says he is struggling with those too. Custard is on its way today with me, with mushed apple pie instead of cake...! To do...

Solicitors visit - LPOA now signed and updated for both parents (sent off to bro's). Big relief. Done.

Great news that nursie got a cancellation for Dad with Dietician for tomorrow. Fantastic! I thought we were stuck with the appointment in 3 weeks. Also OT coming and bringing toilet frame next week. Dad had refused to let me buy a raised toilet seat or frame. Things are happening apace....

Off to take the poop-tackular squirting hound out for walkies, then to parents....

What a marathon you have to do. You deserve a GOLD MEDAL. I’m sending one over to you in my mind. I hope that your walk with the poopy dog is relaxing. Have you thought of putting a muzzle on him or her so that nothing can be eaten from the floor whilst outside? Love Lynne x