Hi - it's the first time I've posted, although my Mum was diagnosed nearly five years ago. Mum is 83yrs, lives at home with my Dad, and is in the 'locked in' stage of her PSP. Cannot move or communicate at all, is rig/peg fed (nothing orally & all meds go through tube), and very frail. She has scopoderm patches to help stop secretions/sickness, and is now having oxygen on a more regular basis. Mum has started vomiting (at least once a day) over the past week, leading to a trip to resus last Friday, as they suspected aspiration. Investigations/xrays all showed nothing wrong and she was discharged. Paramedics called again yesterday for same reason, oxygen given and sats checked at home - again found nothing wrong. Has anyone else had this experience with vomiting as PSP progresses?
Can anyone help? Vomiting: Hi - it's the... - PSP Association
Can anyone help? Vomiting
Sorry, I can't be of any help to you, but sending you lots of love at this awful time.
Lots of love
Heady
I am very sorry to hear about your mum. Are her bowels working ok if she is constipated that can cause her to be sick. Did they xray her lower abdomen when she was seen at the hospitol on friday. Good luck. Janex
I'm so sorry your poor mum is going through all this and your dad and you probably feel helpless, unable to help. I have no experience of this, so can't help either but just to let you know I am thinking of you all at this horrible time.
Sending you a virtual hug.
Love Nanna B
I'm sorry but I am unable to help either but send my love too and cannot imagine how hard it must be to see your mum so poorly x
Did you miss not replacing the scopoderm patch...or maybe it slipped off...? that will cause that condition,Madeline is in the same stage as your mom,Rollie
Hi. I assist my sister in looking after my brother-in-law who sounds to be at the same stage as your mother, albeit he is not frail. He has been peg fed for nearly three years. He produces a lot of saliva in spite of patches and other medication. He did at one time vomit very often, and was hospitalised once for aspirational pneumonia. Even now, if he has a bad coughing fit as saliva or mucus slip down his throat, he may bring up some food.
We have taken a number of steps which between them have improved matters.
1. Using bolus feeding. This involves feeding him from a syringe. It can be done very slowly, and during the day when he is upright in a chair rather than overnight when he is prone. We also cut back on his food volumes at each feed to try and ensure his stomach did not become overloaded.
2. Sleeping him on his side in the "recovery position" rather than prone on his back (albeit he would have been propped up on a pillow, but invariably slipped down). This enables the saliva to slip out of his mouth rather than down his throat.
My sister has also tried other medications/treatments to reduce the volume of saliva. He had botox injections in his saliva glands (I am not sure this made much difference), and is on glycolpyrronium bromide as well as the scopoderm patches.
I hope this may be of some help. This issue and that of constipation are the two most difficult to face in our experience.
All best wishes to you and your family. This is all so tough. Melvyn
hi gladyou have joined the site btu v hard for you your mum and dad with this vomiting
i haven't heard of it being a problem with PSP `Buti am lucky and am not yet as bad as your mum si and hope i never get to the stage where the doctors wan t to peg feed me as i have decided i do not want one fitted just to prolong my life when i can no long er enjoy my food..........
I tis a personal choice and a difficult one to make i am 68 going on o21 and wa xdxd 4 yrs ago with this PSP
LOL JILL
Sorry I can't help. I just wanted to say you have my support long distance. I used to have to go to the emergency room several times a week..horrible! But that has stopped..?..Symptoms seem to come and go. Usually if I just wait a bit things change again. Hang in there..all this is very very hard. It is hard to watch feeling helpless. I'm not sure that the doctors know that much either about this disease but I still go and give them their money and pay for the gas driving there. I think it has to do with needing a "grown-up" to tell me it is ok.
Jill
Many people do not know that with PEG feeding you can aspirate. It is related to how knowledgeable the person administering the food material is with a PEG. It is possible to cause reflux and aspiration when feeding a PEG patient. There is a specific protocol to PEG feeding that must be followed exactly. Not saying that's your issue but it just might be. Jimbo
A very big, and heartfelt, thank you for all your replies, good wishes and virtual hugs :). We have been on this horrendous journey with mum for over five years and, just when we think she can't get anything else, something new raises it's head! Mum is a real fighter, she was admitted to hospital last year with peritonitus, was there for over 3 months, and we had the 'relative room chat' four times, but still she fought back and remains at home with dad (family decision to care for mum at home), with support from carers and community nurses. Sometimes it feels like living with a ticking bomb and each time the phone rings we wonder if this is the explosion!
Mum has had the peg for nearly 4 years. She started with bolus feed but, as she became more frail, it was no longer suitable. She is now on pump feed through the day, for 10 hours, at a low rate. We are meeting with dietician next week to look at a different feed, as her body may be rejecting the one she has now. Bowels are ok, and stomach has been checked, no constipation. We have increased scopoderm patches and sickness has now stopped. GP said it could have been a viral infection.
Sending my thoughts to you all too xx
She reminds me of my father who had Parkinson's and died at home at 99. The doctors were telling me for about 10 years that he was going to die in 3 months...but he kept on coming back. A fighter is always a fighter. Good Luck. You are doing a wonderful job.
Jill
Costa Rica
I wish I had the answer. Mom is 85 and she throws up on a daily basis at least twice a day. She eats solid food but can't keep it down. She actually throws up while she is eating....her speech is good but her posture is now very bent....doctors can't find anything wrong. She is just getting over pneumonia.....I HATE THIS DISEASE
Why is my Mum so tired when going out to the shops in her wheelchair being pushed by us, it can take 2 days to get over a 2 hour outing?
Not sure I can cope anymore
Please Help - Home care on NHS
Going on holiday
Deterioration
