When The Pain Starts

[MSADaughter]

Hi -

My Dad was diagnosed 2 years ago but he has had symptoms for about 10 years, longer if you consider sleep apnea a warning sign.

He has pursued a bunch of junk woo woo cures and obviously none helped, and in the past 8 months, has deteriorated rapidly due to recurring hospital stays and infections. Lots of OH, his bladder doesn’t work at all, poor balance, loss of consciousness, etc.

He has been having issues swallowing for a few weeks, and just now, is beginning to have pain for the first time.

I know this varies, but I have heard that once swallowing issues and pain start, end of life is near. I just wanted to ask here, because I want to be prepared. Thank you.

[Derkie54]

Hello,

Sorry you've had to come here but welcome.

MSA varies greatly between sufferers, everyones journey can be different, my wife has had it for years and has no mobility at all now.

She's been through the falling phase, and then the problems with swallowing and the coat hanger pain as they call it.

The one thing I can say is she tends to have an new issue then she's stable for some time which gives us time to adjust to our new normal.

Hopefully your Dad's progression will halt for a while, I'm sure you're all doing the best you can for him......you can't do any more than that.

If you have any specific questions then this is a good place to start. Also the MSA trust is great, they have a lot of literature available and extremely helpful staff.

Take care

Derek

[MSADaughter in reply to Derkie54]

Thank you. All of this is so overwhelming.

[Paul_and_Sue_Wood]

HiNo one knows where the end of the road is or when we get there, we all know at some point we will arrive.

My Sue is over 5 years since diagnosis and 13 years since stopping work

She is unable to help herself, has a PEG feed system as she has trouble swallowing but can still spend money at Marks and Spencers!!!!

In all the encounters with other sufferers I've noticed a trauma event like a fall or illness causes a change in symptoms.

I plan for limiting risks as much as I can and do as much as we can.

I know sue won't be with me forever and enjoy every day that we can.

Talk to the nurses at the MSA trust as they will be able to reduce your worries by helping you put a plan in place.

We are all here on this site to help where we can.

Good luck.

Paul

[MSADaughter in reply to Paul_and_Sue_Wood]

Thank you! It seems that my Dad’s traumas keep piling up the past few months. He is also quite resistant to accepting his situation as progressive and permanent. I am glad I found this place

[butlin]

Hi I have swallowing difficulties but mine is only liquid so far and you can get a thickening powder to put in his drinks if he has eating problems they can also offer a peg so this doesn’t necessarily mean end of life , you can get medication for the pain and lots of other advice from the Msa nurses take care Regards Chris

[MSADaughter in reply to butlin]

Thank you so much, Chris. I am happy to hear that there are ways to manage these new symptoms. Ana

[TK-67]

My reply is very honest - my mum is 3 years from diagnosis (10 year since an initial PD diagnosis), she has deteriorated a lot in the last few weeks, her pain has increased and she now has a morphine patch to manage this. Her swallow is now very tired and as she does not want to be fed, we are just monitoring fluids and letting her eat a little of what she enjoys but there is fast weight loss. Her mobility has also now gone. She has 'bounced' back in the past but this time sadly it's not happening. The key bit of advice I think is to have a plan, our local hospice have been amazing, and can advise and support on pain relief, help you getting help and support. A plan has always given me a little security even when mum has not needed it.

[MSADaughter in reply to TK-67]

I’m so sorry about your Mom. You’re right, a plan is helpful regardless if it’s necessary.

[FredaE]

a lot of wise advice from people here as usual. there is one piece of advice which also applies to everyone else. Don't let the sun go down on a quarrel. everone has regrets about whether they did enough, but it is heartbreaking to remember that the last words you ever exchanged were angry ones. It is not easy when you are tired and stressed but do try