Some of you may remember our daughter Sarah Painton, and the worry we were going thru, with her Primary Progressive MS. Her illness has now got worse, with having a catheta fitted, a Baclofen Pump for her Spasms. she is in a wheelchair 24/7. Cannot walk, feed or wash herself. Today we have further problems, with now only saying one word at a time, not knowing who close family are. Now she has difficult in swallowing, so much so that the MS Nurse is talking of Sarah having tube fed into her tummy. Sarah is only 37 years of age. At this present time we as parents are increasingly worried of the future. We do our best to keep Sarah happy. so does her husband who is her Carer.
But we must be honest with you lovely people out there, we are very very concerned, so much so that we only think that we do not want sarah to go thru all this pain and hurt anymore.
Thankyou for listening to us, Chris and Brenda Brennan
so very sorry to hear that your daughters ms is so severe, i cant begin to imagine how hard it is for you having to go through all this,god knows its bad enough normally but for it to progress like your daughters has is just hell for you all…
I am so sorry to read this x I can’t imagine the pain you are in as a mum and dad to witness your beloved daughter go through this. Sending you huge amounts of hugs and love x x x
Oh god, this must be torturous for you, I’m so very sorry. In circumstances such as yours i can only imagine how hard this must be. I’m 36 & ppms but nowhere near as disabled as your daughter Sarah. All you’ll want to do is take it all away from her. I’m so sorry. Sending you hugs xx
With situations like this it’s common to think that anything I say to you must be really helpful in some way. But then when I can’t think of anything, I just say nothing at all. Yet all that does is leave you in silence, and that’s no support at all. So instead I’ll reply, not to offer any glib words of encouragement, but instead just to say I can well imagine how heart wrenching this must be for you, I hear your pain, and my heart & prayers go out to you all.
No words that I can say will make things better, but I so desperately feel for you. As a parent, we want to take their pain away & bear it ourselves. You are both being so strong for your dear daughter Sarah, I admire you greatly & hope you’ll find the strength to go forward from this heartbreaking time.
I totally agree with what Dan said. I sat here thinking nothing I say will make it any easier for you, but if I said nothing then indeed it would leave an empty silence. As a parent myself I can’t begin to imagine how you feel, so I am thinking of you and hope you can be strong for your family.
As parents all we want is for our children to be happy and content. To have a child who is ill when there is nothing we can do to prevent their suffering is emotional torture. Like everyone else all I can do is offer sympathy for you and your daughter, my best wishes go to you all.
Please don’t lose hope, research and trials are ongoing. It is my firm belief that treatment will continue to improve and a cure will follow.
A desperately difficult situation. You must question yourselves whether having a feeding tube put into her stomach will only prolong your daughter’s hurt and pain.
Just to echo everyone else - my heart does go out to you. There is very little you can do but be there for her as and when she needs you, even if your heart is breaking.
We all wish we could offer some form of encouragement. I know how upset my parents were when I was diagnosed , 32 years ago. I looked as if I had a stroke. Paralysed down left side and slurred speech. I know my mum felt guilty - as if it was something she had caused.
The catheter will help -l have had aSPC for 20 yrs. The feeding pod will also help and is reversible. Anything that makes life easier go for. Especially if it makes caring for her easier.
Not being able to swallow and choking is a fear of mine.
I hope that her husband is getting enough support. It is better to let the nurses deal with the more personal care so he gets some quality time with her.
Dear, dear people. As all your previous replies, I am offering my best wishes. Sarah has been dealt a particularly detestable hand. My heart goes out to you all. PPMS is often bad, difficult to cope with and we wonder how on earth we’ll continue to cope at all.
I am glad you have each other to lean on. If that is not enough sometimes, then please remember, we are listening to you here.
I am also in wheelchair and need help 24/7. I depend on my hubby and carers, plus I have a suprapubic catheter. Chronic disability robs us of so much. It can be so cruel and savage.
I am so wretched to read of the terrible time you are going through. I feel completely inadequate of course in saying this, but please be aware that so many of us on the forum know how you all suffer. You seem such genuine people and do not deserve this at all.
A big thankyou to you all, so far the replies have been very heart warming to my wife and I.
It gives us both a lot of hope, that behind us we have such wonderful people like your selves, that give us time and help for us. Thanks again Chris & Brenda
So sorry to hear about your daughter. Life is so unfair I hope the baclofen pump is making a difference. I know someone who has had one fitted and it was trial and error at first getting it right. It took time but does seemed to have helped.
You sound wonderful parents and just by being there your support is likely to be helping so much. Has your daughter talked to you about her wishes / feelings?