I follow this community and am very impressed by the support you all give to each other. It inspired me to push for a community especially for Multiple Systems Atrophy (MSA) a condition my wife was dx with a couple of years ago.
Your community is larger and I wonder if anyone can help? Jax has just this week been fitted with a PEG and it seems sensible to have a strap or belt to protect it when wearing loose or no clothes. I have seen these on US web sites but nothing in the UK. Neither Nutricia who have given the training etc nor the PEG manufacturer are able to help.
Have we missed something or is this a need in the market yet to be met?
Best wishes to everyone, the support you give each other is truly inspirational. Ian
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Yanno
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I tried to make a belt out of an old robe for the tube. B did not like it preferred the port to be taped next to the site on stomach.....It can't fall out...like a catheter, it has a ball at the end inside stomach that is larger than the hole unless one tugs on the thing. It can be loose though like I said we taped his.
Nice to meet you. My husband was diagnosed with MSA after 12 months of thinking it was PSP, although he was also told he was showing signs of MSA at the time of the PSP diagnosis. He decided that he didn't want a PEG so I am unable to help with your query unfortunately. I just thought I would make contact because of the MSA.
Sadly my husband died in February after aspirating. However that can happen with a PEG too. I guess there maybe less likelihood? Not really sure.
Good to hear from you - why not have a look at the Multiple Systems Atrophy community, it is small as we have only had it for a few months but already members are offering each other some great support.
I use the PSP community as the model we should be striving for, you are so supportive of each other here.
Jax was dx in September 2015 following a year of thinking she had had a stroke. We were lucky that we had an excellent neurologist who identified what he thought was MSA-C early on.
So sorry to hear of the loss of your husband, you must miss him so much.
I have been on the site last night but I didn't even know it existed until you told us. This site is so good. People really are supportive and have a wealth of knowledge. PSP and MSA share a lot if the same symptoms it appears. When my husband was admitted to hospital they had no idea what MSA was! I did meet a couple of nurses who had heard of PSP. Not great is it? People can't be treated if the very people who are meant to do that don't understand these conditions?
We need jointly to make our MP's aware of these conditions too! Otherwise there will never be funding to treat them?
On my platform now! Feeling a bit stunned that my husband is dead. I am also angry at how he was treated and indeed not treated! I keep feeling so badly that I felt worn out by the end of his life and struggled to fight the way I should have done.
Hello Marie. I'm glad you looked at the MSA Community - why not join them and copy your post above onto it - it will be well received. I agree that the journey that people go on with MSA is similar in many ways to PSP. Originally I only followed the PSP community until The MSA Trust started the dedicated community. I have used this site (PSP) as an example of how supportive communities should operate - I have said it before I know but I find the support people give each other here to be truly inspirational.
Please don't beat yourself up too much about the professionals not knowing about PSP and MSA. The MSA Trust estimate that there are about 3,000 people with the condition in the UK - most neurologists have only seen a few cases throughout their careers. There is so much we can do to spread the word and for my part I hope more effort is spent in trying to find a cause/cure.
Being a full time carer is exhausting and I'm not surprised that you felt worn out. As time passes hopefully you will regain your strength and maybe spend a little of it getting the word out about PSP and MSA.
I look forward to seeing you in the MSA community as well. Take care, Ian
Hi Yanno, I thought my husband should have protection for the PEG tube but tape irritated him. Instead, when he was naked for showering etc, I gave him a squishy toy caterpillar or ball to hold to stop him fiddling. In fact, he held something most of the time to stop his hand "clawing" It was never a problem. It wouldn't come out if pulled, although before he had his I read a post here that said something had happened to one which scared me a bit. Most of the time it was tucked under clothes and there was never a problem. Once you are both used to it I'm sure you will find the same.
I bought one of those for my wife,actually bought a second one to have on hand should the first one get soiled. Seems like they cost around $15 US. It wraps around the waist and has Velcro to hold it in place. Has a nice little pocket to keep the tube tucked up in. But for some reason my wife just never seemed to want to wear it and I didn't push the issue. Years ago my wife was a very private woman and would of never wanted any one knowing she had A PEG tube, should it accidentally come dangling from loose fitting clothes. But as her disease progressed (PSP), she could care less what others thought. Over time, I think you just get used to it dangling from your body
Many thanks for your help - I think it is something that time will sort.
It's funny how one gets used to things - the first flush through lad Thursday seemed to be a fiddly affair but after just a few days we are almost doing it blindfolded. At the moment just using PEG for fluid and so not a difficult process.
Yea. Eventually I could do it blindfolded too. Almost got a rhythm to it. We started with just water and occasional feed and ultimately all water and feed. It definitely extended her life by 2 years and was totally worth it. I lost her a little over 8 months ago and it seems like just yesterday. My heart still aches. She was just 55 days shy of turning 55 years old.
Thanks. We were married for 35 years, 1 month, and 3 days. And unfortunately most of my memories are those last 3 days. She didn't really suffer that much. Died the normal course via aspiration pneumonia.
Oh ketchupman, it seems to be so unfair for your dear wife to pass on at such an early age. You showed such love and care. Your union held many blessings I am sure, not least your undying love. Sending you a great, big hug. X
My mum had a peg tube and one of the carers named it Sid, which helped make mum laugh whenever we talked about it. It was a long slightly cumbersome thing and I knew it couldn't be pulled out and mum thankfully never tried. She did open the valve once fiddling though and soaked her lap so didn't do it again haha. You have to keep cleaning round the wound site and flushing with water but this helped mum with her hydration and meds so much. It wasn't ideal but I used to use squares of gauze and make a sling for the end of it to sit in so the plastic wouldn't dig into the skin and it was taped up out of the way. We used a lot of medical tape too which unfortunately also irritated mums skin a bit so I had to move tape sites round and leave it dangling free whenever possible or in the house. But taped it up in the gauze sling at bedtime so it was out of way and wouldn't get caught in the night.
As I have put elsewhere in this post, we are lucky that Jax cognitively is 100% - still remembers names, places and people better than I do!! We also know that it won't easily pull out, the issue is, as you described, more one of convenience - shower time can be interesting enough without that dangling between your legs!
I love the idea of Sid - we name everything - we have Dennis the sheepskin to prevent bedsores, Dog the call bell that barks when Jax needs me. Mind you Jackie isn't keen on snakes and so Sid (the snake) may not be the best thing.
There was nothing wrong with my mums cognition either, it's just PSP is known to make people restless and fiddle! Yeah giving it a name suited my mums sense of humour too and we could laugh about Sid getting in the way during showers etc!
Mums health improved after her peg as hydration, laxatives and meds etc so much easier to give so I hope Jax feels a similar benefit. Best wishes to you and Jax X
Hi Ian. My husband has a PEG and I just fold the tube back on itself and keep both parts together with a safety pin. Not ideal but it works well enough. The professionals weren't impressed with my innovation lol.. all the best. Marie
Hi Ian my husband does not want a peg so I also have no idea about it sorry, but welcome to this site more like a family, someone always there to rescue you when you need them . Yvonne x
Hello Marie, I think there was something wrong with the HealthUnlocked site last night - I tried to respond to your comment and couldn't post either. I tried a few times with no success. I would try again today and see how you get on. Ian
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