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berdbrain
6th October 2012, 16:04
Hi all, it's me again, my sis had her peg put in at the end of August and all is ok with it but she has lost a bit more weight. She is eating high calorie foods that she can manage like double cream, lumpy soups, ice cream as well as Ensure via the peg, but she says that this week she feels she has eaten a lot and she is peeing much more 'lots of water in and out' she says, but she hasn't lost any more weight but she hasn't put any on either?
You have helped me by telling me in detail (Pete) what you try and eat, but does anyone have any tips via the peg for high calories going in?
You know it's our main worry because she is so petite, she cannot afford to loose much more weight.
I did mention Robutussin but at the moment they are not using it because she was having to get used to the peg feeds and the medications.
Thanks, in advance
Debbie

JONESY
6th October 2012, 20:10
Hi Debbie,
I was in the same position as your sister.The dietician prescribed procal shots in addition to overnight feeds and i have put on a little weight.

Chris

michelle
6th October 2012, 20:11
Hi Diane
My mum also recently had her peg fitted after rapid weight loss. She is prescribed two cal liquid feed that is fed via a pump throughout the day. It's not really recommended that anything other than liquid feed or liquids be put through a peg as this may cause blockages. Your sisters dietitian should be able to advise as to the best feeding regime for your sister, she may need to have a high calorie liquid feed as her main source of nutrition, not necesserilly increase weight but maintain her and give her the other vitamins and minerals she needs. If she can tolerate some food, you can add milk powder to add extra calories we were told.

Best wishes

Michelle

berdbrain
7th October 2012, 14:36
Thanks Michelle and Jonesy, I will e mail my sister straight away with this info. She is using the ensure feeds and puts them in via peg at mealtimes and then eats also. The milk powder sounds like a good idea, but she is so fussy and I say that laughing because I would be the same about things, Pete recommended rice pudding and she said she just said yuck even the thought of it was too much! But now of course her life depends on it and so she is trying to eat high cal things. I will say about the procal shots too. It is ironic, we are all trying to loose a bit of weight before a wedding in Jan and she is trying to put weight on.
As always thanks so much for replying, and I hope you put on more weight Chris, and Michelle I wish your mum gets more energy from having the peg.
XXXXXXXXXXXXXXXXX

miranda
7th October 2012, 15:47
Plenty of cream helps with swallowing and is high cal and also delicious - even makes rice pud tolerable!

berdbrain
8th October 2012, 22:43
You are so right Miranda, I do see her eating double cream out of the tub with a big spoon.....so she does try to fatten herself up....
I have emailed her all your suggestions and they are going to speak to the dietician about them.
many thanks
Keep on keeping on
with love
XXXXXXXXXXXXXXXXx

berdbrain
9th October 2012, 19:27
Hi all regarding two cal, my sis says she has started on some this week and it is making her feel very sick.....did it have that effect on your mum at first and has she got used to it, and is it not making her sick any more? So many questions...also my sis gives herself feeds, (or with her husband) do it's not like a drip feed. Apart from the not be able to talk or swallow properly she is ok and so it not bed bound. She was going to SALT today and was going to ask about procal shots.
Does anyone have experience of two cal and does the sickness go away.
Hope your day has been a good one,
thanks
Debbie

michelle
9th October 2012, 21:35
Hi Debbie
My mum has never had sickness from two cal. She has her administered through her peg 720 ml at 90 mls per hour. If your sister is having two cal via her peg it may be that the feed rate is too fast as this can cause nausea. I'm assuming that if she's on two cal she has an Abbott pump as everything comes from one place, if so you can ask their Abbott nurse to come out and community dietitian to assess the situation.

Best wishes

Michelle

berdbrain
9th October 2012, 22:12
thanks for your quick reply Michelle, she doesn't have a pump, she is putting it in manually.... well by loading up the syringe and putting it into the peg via the tube, so maybe she needs to do little. I'll tell her what you do with your mum. and also about the Abbott nurse.
X

berdbrain
10th October 2012, 21:25
In the last post I meant to say little and often, but I forgot the often!
Well, thank God for this forum, with the two cal they were putting it in too quickly....so wonder she is feeling so sick, they are phoning Rachel from John Radcliffe and the Abbott's people tomorrow. So Michelle thanks again......she will also look into the pump now tomorrow. I am so so worried she has lost so much weight....she has texted me and she is worried too....This is so awful, I am just hoping that she will get it sorted and begin to feel better, get more nutrition and put on some weight. My heart is so heavy tonight, and I cannot text her back.she doesn't want to make her other half upset......it's so hard when you can't just pick up the phone and speak.....I can't really imagine how she is feeling, but I am trying.
Thanks so much once again Michelle XXXX

michelle
10th October 2012, 23:12
Hi Debbie
Glad your sis has got it sorted. It took us a while to find a happy medium with feeds. Once the feeds are administered so it suits your sister I'm sure her weight will increase. My mums managed to gain 6lb, I know it's not a lot I only have to look at a cake to gain that but in the scheme of things it's an improvement. Don't be worried, not easy I know but the Abbott nurse I have is wonderful. they know everything from looking after pegs to what feed is needed, my mum was sent home with a nasel gastric tube before her peg was fitted and they even came out to show me how to deal with that and believe me a peg feeds a doddle compared with that.

Best wishes

Michelle
,

berdbrain
13th October 2012, 16:38
just to let you know that dietician came out to my sis on Friday and then she sent Abbotts nurse 'round, to explain how she should be feeding through peg, s l o w l y. She had lost another 4lbs in a week, not good at all. she is now adding the feed much more slowly and increasing the amount as they said she wasn't giving herself enough, so please God let's hope this does the trick and she gets some stamina back and puts some weight on.....I should attempt to loose 4lbs in a week in sympathy with her, but I don't think I would be able to, it's a bugger isn't it - when we need to loose weight it's so hard and then when you've none left to loose this can happen. Anyway I am hoping she'll pick up now.
love and a prayer for you all
BB X

pete
13th October 2012, 17:21
Hi Debbie,

I will keep the fingers crossed for the Sis, hope she begins to respond, now the feed problem is sorted, Your so right it's a bugger , Best wishes to you and the family.

gears
pete

michelle
13th October 2012, 23:58
Hi BB

So happy to hear this, your in my thoughts

Best wishes

Michelle

pete
1st December 2012, 10:57
Oh for gods sake,

Where is Mike The Terminator when you need Him ????.



Sorry, Pete 'mea culpa' - we picked up one but not the other! Suffice to say he has finally 'gone the way of all spammers'. Mike.

berdbrain
1st December 2012, 11:45
hmm I shall treat the remark from the newcomer with the contempt it deserves! Still so worried about weight issue, it's not getting any better, Sis eats creamy soup and apples with cream and bits of toast and honey, but tho she's switched to the fruity peg feeds she still finds them make her feel sick, very worried, she still has her sense of humour though, she and hubby are coming to us tomorrow for my daughter (her favourite neice's) birthday and one of my son's girlfriend's mum is in from the country - when I was inviting sis and hubby and tellng them that there would be 2 extra people she hadn't met before - she typed 'dont worry I'll talk to them' Hah!
I sent her all info on Botox and she is considering her options.....although the garage is full of kitchen roll!!

pete
1st December 2012, 12:30
Hi Debbie,

sorry no help about the peg issues, but there is bound to be someone who knows, I would try hard not to keep worrying yourself ,it's as I would expect a caring person to do ,but it won't help Sis if she knows you getting upset about things none of us can do much about, and hope the weekend is a really good one for you all.and yes we have a load of rolls in ours too???

Regards
PeteXX

Rory
1st December 2012, 19:12
Hi all
I have had the Nutricia 'flowcare' pump since July when I became 'nil by mouth' after throat infection. I have two three hour feeds a day of high protein/cals but I am still losing weight gradually. I have lost five and a half stone in nearly 3 years. The weight reduction has slowed down a little.
At first there was a bloated, nauseous feeling but that has gradually gone and I feed at the rate of 175mls per hour. I suggest persevere and hopefully the feed via peg will settle down. I certainly recommend feeding this way compared to the syringe. My pump comes in a shoulder bag so I can feed whilst out and about as well which is convenient if needed. I hope this helps.

Thank you

Rory
I am very I interested in what you have said about the proclaim shots - I will investigate.

berdbrain
1st December 2012, 21:40
Hi Rory, I have to say first of all that your posts make me laugh out loud, you are keeping yours and everybody's spitits up, and it's better for us all to keep positive.
now about the pump...I really think she needs to have the pump it will put more in but more slowly so she will feel less sick. You can still eat something like soup and cream, can't you? and also she likes vienetta and can eat that and jelly.
Sadly she cannot drink alcohol, she used to like pear cider but now it doesn't taste good to her. It sounds as though you are quite similar in your symptoms and she was diagnosed in September 11. She has drop foot with one foot but that's all there, but like you as far as speech and swallow.
Keep making your jokes and as Pete says enjoy each day, that's what she does,...but I'll tell her about you and the pump and also how discreet it is, I think that may make her think more seriously about it.
I am looking forward to a lovely day tomorrow, I hope you all have a good day too.
sent with love and a prayer.
Debbie
XXX

Rory
2nd December 2012, 00:38
Hi Debbie
Thanks for that and I wish all the best for your sis and her feeding. I am able to take sips of liquid but mainly as a taster amd for what I call medicinal purposes ! Before 'nil by mouth ' I did have pureed foods amd soups in addition to syringe feed of Fortisp. In all truth the peg is now more of a discipline - one feed when I get up (if I get up!) and one in the evening when I need the strength to fight the missus for the remote control ! I don't tend to feel hungry so if I am out for the odd evening I come home and have a feed later on .

On the subject of weight, I originally asked the doctor how I can lose a stone of ugly fat and he said " cut your head off!"
A bit drastic I thought!

The jokes , like me, won't get any better but why should i be the only one to suffer them !

You too have a lovely day tomorrow - as I said to my doctor - it could e worse I could have toothache!


Rory
X

magic
2nd December 2012, 07:14
A late post but thought that I would mention that the homeopath isn't suggested that Peter take 15 mls of aloe Vera juice before each meal . This is said to help the body absorb the nutrients in food. He has been taking this for about 10 months. He has had no weight loss but this could be due to the high fat content of his food.

Magic

berdbrain
2nd December 2012, 09:37
thanks for that magic....it always makes me laugh when I say aloe vera, that's cos I'm a softie Southerner and I say it in the style of a Coronation Street pub regular.....sad me! but I will pass this on to my sis, so thanks again.
As always Rory, I laughed at your words, so thanks for cheering me up now I better go and sort out dinner!
TTFN

Rory
5th December 2012, 14:18
thanks for that magic....it always makes me laugh when I say aloe vera, that's cos I'm a softie Southerner and I say it in the style of a Coronation Street pub regular.....sad me! but I will pass this on to my sis, so thanks again.
As always Rory, I laughed at your words, so thanks for cheering me up now I better go and sort out dinner!
TTFN

Have to say BB - aloe Vera has the same affect on me when I hear it ! I a, pleased to say Coronation St is one of many soaps I am allergic to !
The tip by Magic is noted though - thanks

Rory

berdbrain
9th December 2012, 17:36
Evening all just thought I would update you all on my sis's situation....still no weight on.....but she is on the glyrrr stuff for saliva control and I feel that it has improved it a little bit...of course she has the opposite now too ...dry mouth, but she has the biotene and some other spray for that..I suggested a cotton wool wedge in her lower lip like the dentist gives you...but she said I was not funny. she is also taking an anti sickness pill to help with the peg feeds.....but she can't get enough of them down although she has promised to try harder this week. I did once again suggest the pump to her but she just doesn't want to do that, yet.
We had a wonderful family meal last Sunday and she looked beautiful and ate some soup and some of the dinner which was a casserole called 'drunk lamb' sounds up your street Rory and Pete? it is just lamb shoulder and neck cooked slowly in cider, plus veggies of course, but it is so tasty and so tender it was a bit eatable for her.
I ate with her last night while the two men went for an Indian....I felt like a gannet(I think that's a greedy bird?) compared to her,...I eat so quickly and she is so much slower, and then if I talk to her she has to stop and use her ipad to answer. But that's ok I don't mind the silence, I think we just have to get used taking our time, there's no hurry and what she wants to say is worth waiting for on the ipad.
So weight is still a big thing, she feels this illness is eating away at her muscle mass and that's what she's lost, but I hope I have an increase in weight to report next week. The aloe vera is being bought too.
with love to you all, and of course prayers
XXXXXXXXXXXXXXXXX

Rory
23rd December 2012, 13:44
B B

Hi there
I can relate to so much of your comment above ! Too much saliva during the day - too dry at night ! Getting the balance right is a nightmare.
If I could have sold the many skip loads of saliva that I have produced to some renewable energy provider , I am sure I would be a millionaire!
Liquid assets spring to mind !
As regards the drunk lamb - sounds delicious ! As I eat through the PEG now 100% , I am about to complain to the TV channels , in that they are showing too many food adverts with big bronzed birds (turkeys) and that is making me dribble more !

I might treat myself to a bag of sawdust to chew on !

Have a lovely Xmas and don't drink too much - but don't drink too little !

Rory

roy
24th December 2012, 12:53
Hi Rory,
I know exactly what you mean as regards the food adverts,Jamie bloody Oliver 15 minute recipes my arse,Hussain Bolt can run under 10 seconds even if he were to show me how he does it I would struggle, the M&N ads great. Man v food makes me puke.how can anyone eat that much.Sorry guys I start to ramble but I seem to be watching all of food related program's lately have to go my wonderful daughter has just made me scrambled egg smoke salmon on toast happy days.

Merry crimbo.

Rory
24th December 2012, 23:36
Roy
You are obviously spoilt down in Oxford !
Have a good one !

Rory

berdbrain
26th December 2012, 13:59
I am loving reading the posts today - Rory your description of you plus all the paraphenalia you need made me laugh out loud, as I usually do when reading your posts, so glad you had a good night's sleep though.
Miranda, I know the Miranda you mean, she's very funny too!
Reading Joybells' daughter's eulogy just made me cry what a wonderful woman and to have such a loving daughter, that's all we could wish for.
We had the most wonderful Christmas Day, we played games, and laughed lots and ate too much and had plenty of drinks, it really was a day to treasure, and we couldn't have wished for it to be any better....The fun will continue....enjoy these holi days everybody XXXXX

Rory
26th December 2012, 16:01
BB
The last paragraph of your post made it for me ! So glad you had and are having a great time !
We played charades last night which was great fun - now they all know what it is like to lose your voice !
I keep seeing all this food around which is making me quite envious - especially the home made cheese straws and marmite whirls !
I think I will hide behind my space station of gadgets so I don't see them !
Now whatt have we got on tv - two live footy games - great !
Keep smiling all and spread the high fun factor on all over !
Rory

roy
28th December 2012, 11:25
Hi Markalex,

Thank you for you kind advice, I know from experience that there are a lot of drinkers on this forum and they believe Whisky,Brandy,Gin and Rum help with the condition of Mnd . I have extensively tested these recommendations on a 40 year trial and can report whilst they have made no difference to the MND ( apart from falling over) they have given me a warm comforting feeling.I am therefore interested in a water filter to cure me.


Roy.

roy
28th December 2012, 11:28
Hi Rory,

I would imagine you like me have been waiting for a water filter, have you also done extensive testing.

john
28th December 2012, 13:51
Hi Roy,
Welcome to your new persona - found it very confusing with Mike FD editing your post and a reference to Markalexx being no longer with us. I thought the old you was Fozzie Bear (or a near relative) so couldn't understand. After some thought I concluded the reference to Markalexx was a post no longer there.

john

roy
28th December 2012, 15:50
Hi Mike,

That's a shame, it makes me look like a bigger village idiot than I actually am.got to say Mike you was real quick on the draw with that one ,you managed to beat the John, Pete and Bob also known as the three musketeers.

I would cast you in the film Carry on Deleting. Lol

roy
28th December 2012, 15:55
Hi John,

After seeing Terry coming out of the closet, new he was Father Christmas all the time, thought I'd show my mug, don't get me wrong I have always loved redheads but when Bob kept making reference to me having ginger nuts had to put than one to bed,however you may have noticed the picture in black and white?

Rory
29th December 2012, 11:23
Boys - thanks for the clarification! Roy often gets me confused with his posts !
Water filter - whatever next ?

I am still trying to decide when my MND kicked in.
At a very young age I felt wobbly on my feet , couldn't talk properly and had puréed food.
Then in my late teens I started slurring after being introduced to alcohol - still wobbly on the feet but eating had improved - curry and chinese food.
Later on the breathlessness seemed more acute running around a hockey pitch and chasing hot women
Then the dribbling started - no not on the hockey pitch !
Got married then sleepless nights were a problem - wondering how to pay the missus's credit card off !
Irritable - when I can't get the remote control

So nothing has changed for me - I must have been born with MND - amazing how I have survived this long!

Happy new year

Officer Dribble

roy
29th December 2012, 11:32
Hi Rory,

You not the only one, I also get confused with my posts?

Rory
31st December 2012, 12:03
Roy
Has anyone said you look like Baldrick from Blackadder ?
I am not saying it - just interested !

Rory

roy
31st December 2012, 12:05
Hi Rory,

No ginger nuts and brad pit only so far any other suggestions welcome?

Rory
31st December 2012, 21:08
Roy

That is why I don't post a picture - it could upset the ladies if they think that Bruce Willis has MND !

Lisa
25th January 2013, 09:32
Hi,
My mum over the last week cannot managed to get anything down including fluids and puréed food. I spoke to the dietician who has put her overnight feed up to 1000ml and has changed the rate on the pump to 100. Has anyone experienced diarrhoea and nausea with this could it be the rate is too high. She cannot tolerate the 2 two cals during the day as its too much for her, I've been looking at the procal shots has anyone found this beneficial.

Rory
25th January 2013, 12:31
Hi Lisa
I am a PBP 'member' - and now nil by mouth.
I have been using the PEG since July 2011 for liquid feeds.
I use a Nutricia 'Flowcare' infinity pump and I have 2 x 500 mls concentrate feed a day . Each feed has 1000 calories .
I asked for the feed to be split into two as the initial feed was too much.
I have one feed as early as I can in the morning and the other in the evening whilst watching TV /relaxing
At first I found that I was bloated and a little nauseas (excuse spelling) .
I set the flow between 125 and 175 mls per hour but that is down to the individual.
I have raised the rate as I have become more used to it.
I find feeding this way gives me time to go out in the day ( if feeling well enough) and a useful gap in between feeds.
I do experience a little diahorrea but I take a daily laxative to negate blockages as advised by GP .
I have no experience of the procal shots so I cannot comment but will be interested myself to hear other views on that topic.

I hope that helps

Best wishes

Rory

berdbrain
26th January 2013, 17:08
Lisa, there is a doctor with MND on this site who said she had procal shots....I'm almost sure her name is jonesy...maybe you can message her. I hope you get an answer. My sis also finds the 2 cal too much on her tummy, she won't have the pump, and she uses the fruity ensures as they make you less nauseous, she says.
I hope you get things sorted for your mum and let us know about the procal shots, if you find out and your mum can have them.
love
Debbie

berdbrain
5th February 2013, 21:03
So now my sister will begin pump feeding tonight.....she had been not wanting it...but she hasn't been putting on weight and she has been feeling nauseus (sorry) with the ensure feed. I told her about you Rory and how you find the pump better and also Jonesy..so I will tell her again about the procal shots, she should ask her nurse about that because Jonesy says they help and I guess the thing is to start the pump feed slowly so that you get your tummy used to digesting again...
I am happy that she is going to give this a try. A nurse came yesterday and told them of all the services they offer and said that they are on call 24/7 which was nice but she also spoke about end of life care and my sister got so upset...I do wonder why these professionals have to bring these things up, that is the one thing that upsets her and I would have hoped a professional would be sensitive to this....she is not ready for that talk yet. Everyone is different and she is wonderfully stubborn, like so many of you are, and that's how you need to be to carry on with this.
I hope she will be successful with this and I will keep giving her tips from you all.
I would ask Rory, as a fellow BP MND, did you go away by plane since you started the pump feed? I know from the PINNT newsletter and info. that you can but I expect the logistics are difficult.
any advice and comments are appreciated.
love to all
Debbie
XX

berdbrain
5th February 2013, 21:04
:rolleyes:So now my sister will begin pump feeding tonight.....she had been not wanting it...but she hasn't been putting on weight and she has been feeling nauseus (sorry) with the ensure feed. I told her about you Rory and how you find the pump better and also Jonesy..so I will tell her again about the procal shots, she should ask her nurse about that because Jonesy says they help and I guess the thing is to start the pump feed slowly so that you get your tummy used to digesting again...
I am happy that she is going to give this a try. A nurse came yesterday and told them of all the services they offer and said that they are on call 24/7 which was nice but she also spoke about end of life care and my sister got so upset...I do wonder why these professionals have to bring these things up, that is the one thing that upsets her and I would have hoped a professional would be sensitive to this....she is not ready for that talk yet. Everyone is different and she is wonderfully stubborn, like so many of you are, and that's how you need to be to carry on with this.
I hope she will be successful with this and I will keep giving her tips from you all.
I would ask Rory, as a fellow BP MND, did you go away by plane since you started the pump feed? I know from the PINNT newsletter and info. that you can but I expect the logistics are difficult.
any advice and comments are appreciated.
love to all
Debbie
XX

Rory
5th February 2013, 23:09
Hi Debbie

Sorry to hear your comments about your recent nurse visit !

I thought you Russian princesses had your own private planes !
Yes, I rene and I have been away twice since I have been on the pump feed. We wemt for a long weekend to Cannes in August and then for a week inLanzarote in late September. We were to go to Oman for some winter sun after Xmas but that had to be cancelled because of my chest infection.
To start with we had a 'fit to fly ' respiratory test and a letter to take just in case we needed oxygen and had prior arranged it with the airline just Ib case. We found BA to be best and accommodating.
We took the Nippy ventilator on board as usual but I did not need it .it is worth taking a letter from the GP to show when you go through the luggage scanners.
The feeds and pump feed we put in the hold with other luggage - just check on weight and baggage restrictions..
Take plug adapters and you may need am extension lead but hotels are very good at these issues.
We always ask for a comfortable chair to be put on the room for feeding early morning and early evening or you can have the portable carrier whilst you are out in the car driving / sight seeing. both ventilator and pump feeder have a battery time of about 4/5 hours. Keep plugged in at every opportunity.
You can get wheelchair assistance at all airports and we hired one for the week in Lanzarote as we were at a villa - it gets you through customs quicker!
Pre book the seats if you want extra leg room - I can't be squeezed up as I am 6 foot plus and I prefer to lie back for back support.

It may be worth checking if there is a local supplier for feed if your stay had to be extended. Your supplier should help here.

The main issue is lugging all the stuff but it is lighter coming back ! And then setting up a routine in a strange room so that you eventually both can relax

I think that is all

Send me a PM if you need any more details.

Hope it works out for you

Love
Rory
X

Northern star
6th February 2013, 07:57
Hi Rory

This is a really useful posting ... It is heartening to hear you have managed to get out and about with the feeds ... I seem to behind you as I was diagnosed in Aug 1212 and just had. A RIG inserted ... I can still eat and drink but know this is getting more difficult and the options to describe have been explained to me .... ... You have been inspirational on this forum Rory ... Thank you for your input ....

Rory
6th February 2013, 10:38
Hi NS
I had the RIG fitted in Nov 2010 as my oxygen levels/ breathing was poor but I didn't start using it until it became difficult swallowing until about July 2011. So taking feed abroad didn't kick in until our last two trips abroad.
If a PBP member, we also took some pre prescribed antibiotics in case of a chest infection and paracetamol for any temperature / fever - just to be sure.
With regard to oxygen on board for long haul ( I would say longer than 4 hours) the planes fly at higher altitude and there is less oxygen in the cabin. When we went further afield some time before we flew long haul . Singapore airlines charged half price for an extra seat to put the tanks on ! Worth it though as their hostesses are the best ! Virgin were good, they just put a tank on the floor beside you and made a nominal charge. BA just pull down a nose feed mask when you need oxygen and no charge.
Wheelchair access - they take you right up to the plane door and you are usually first on the plane - even before the screaming kids !
Of course, if you are still able to swallow , you can pre book pureed foods etc.
As for inspiration - that is down to the missus - she does the work, the packing etc - I just turn up when I am told to !

Regards all

Rory

roy
6th February 2013, 11:26
Hi Rory,
Sounds like you and Irlene take time on the planning,I too would still like to travel, I still eat and talk and just started respiratory difficulties,for me mobility and arms are my biggest challenge,I currently am looking for electric chair, since my arm strength is diminishing,have you experienced
challenges with electric chairs when travelling,I know I for the first time get anxious with toilet arrangements for example,when we go out I'm always checking on the location of loos never had these thoughts before.

Roy.

miranda
7th February 2013, 11:42
Just to re-iterate some of the comments above. It is so much easier to travel if you have booked airport assistance (even if you are not in a wheelchair). This means you and your travelling companion and your luggage will ride in a buggy all the way to the plane. Virgin even took my rollator on board for me. However, you probably might not get the same support at the other end although I think it is european legislation to provide airport assistance in Europe.

Rory
7th February 2013, 13:05
Quite right Miranda about foreign airports but we have found them to be reasonably good over the past year.
You can even ask on board the plane for them to phone ahead and check that all is arranged for you.

Roy - I must admit the mobile scooter hasn't arrived yet and with my failing use of hands i am wondering if I can use it confidently without knocking everyone out the way or causing a pile up on the M3.
Like you, I do also need to know , for peace of mind, where toilets , ramps and lifts are in advance of any trip out. You need a fast get away if you don't intend paying the bill.

Rory

berdbrain
8th February 2013, 15:33
just to let you know that the pump arrived 2 days late and so last night was her first night...and she said that she found it fine ...and she wished she had listened to me!! anyway it is her who needs to make the decisions, I as the official Forum Finder Outer (yes, it's F FO Roy and Rory) only pass on the good advice you all give me for her. So hopefully now she will put on a little bit of weight and regain her energy. She hasn't given up on the swallow and still has a go at soup, toast, pate, jelly and other things she can manage a little of. Pete I hope you're still managing to swallow. And she is having a birthday party in March, so we can all look forward to that.
I was at the dentist yesterday (yes, Rory even Russian princesses have tooth troubles) and my mouth was so dry and then I couldn't swallow because of the bits of amalgam in my mouth and I suddenly felt so helpless...like you PBPs and I felt so bad for you all.
On a brighter note, I am glad to be back looking at the forum.....my posts were being repeated and then I was unable to get on because of a virus...on the computer..not me...anyway all's well now and it's back on..as you can see!!! oops I've caught the exclamabug
with love
BBXX

Rory
8th February 2013, 19:54
Hi BB
How many gold fillings did the princess have then!
Rory
Xx (2 today for you !)

berdbrain
3rd April 2013, 22:48
Just thought I would share my latest help (hopefully) for putting on weight. I spoke to MND Connect today and they were wonderful, like a talking MND specialist encyclopedia. The lady suggested that we get some prebiotics and probiotics for my sis to take in powder form before and/or when she has her feed, because the probiotics helps digestion and also helps fight the immune system. So I went out and got some from the Health shop (it's not cheap) and it is liquid in a bottle that you must keep in the 'fridge. You only use a quarter of a teaspoon per meal.....as it was explained to me when you put pureed food or Ensure or anything like that, your stomach has no work to do as it would have done when you took food by mouth, so sometimes if you have a sensitive tummy the feed just goes right through you. The probiotic should aid digestion and prevent that happening. I am hoping very much that this is the case...and I will keep you posted, it has been started already. Perhaps lots of you knew this already, but Pete (I know you're still by mouth Pete but this could help you to get nutrition and maintain your weight too), Rory and Miranda among others it may be helpful to you.
Anyway I felt optimistic when I had finished the phone call.....anything is worth a try.
I have also been thinking a lot about 'the fight' and I think that we fight for things throughout our lives, that is the human condition, I was trying to think up some smart quote but all I could think of was Pam Ayres and 'I wish I'd Looked After Me Teeth'....she's doing a tour and she has a website if anyone's interested.
XXXXBBXXXXX

Rory
5th April 2013, 07:30
Hi Debbie
Thanks for the tip re Previotics - I will get Irene on the case ! (so to speak!)

Rory

miranda
5th April 2013, 16:54
Thanks Debbie. I have yoghurt everyday with cereal and cooked fruit or banana for breakfast - I prefer Onken Biopot Natural Set which contains probiotics and have been using it for years since I had IBS and diverticulitis.

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