New to group and have some questions please

[Jillhb]

Hi I'm looking after my dad who is far advanced with msa , catherterised, hoisted, wheelchair all the time, swallowing issues and speech, can't hold head up, eyes closed most of the time x

Two questions if you can help

Dad seems to be using speech less and less, not remembering very much . At times he can be really sharp almost different personality ? Do others have this ?

He has recently started itching head and ears , have tried every shampoo no change, meds no different, is this to do with nerve endings ?

Lots of hugs to those with msa and those looking after, it is a cruel condition xxx

[Beverley52]

Hi yes, my partners memory became a bit of an issue. Tho as you say, extremely sharp at times.decision making became a problem. But certainly not dementia type problems. He had lost the power of speech almost completely, but didn't seem to want to communicate at times, he would zone out on me sometimes. Also found his hearing seemed to go occasionally.

Can't help with the itching part.tho he had extremely dry skin sometimes.so always used moisturised shower creams etc.

Hugs back. It's an awful disease. Both for the sufferer and the career. Hoping today is a good day for you. Beverley

[Jillhb in reply to Beverley52]

Thank you Beverley your right it is an awful disease xxx thanks for replying x

[FredaE]

Sorry to hear this. There are so many things that can be caused by MSA that we need as you are to be careful to check that this is the case. and see if there is a cause we can do something about.No change of soap, washing powder, seasonal food, too hot and sweaty. pillow filling. You all have enough to contend with.

Good like with finding a treatable cause

Freda

[Jillhb in reply to FredaE]

Thank you Freda

[Mick3849]

Hi Mick here MSA diagnosed Feb 12 gone on a bit since use my wheelchair to get around walker for short periods if flat. Have itchy scalp no flaky dry skin haven't changed shampoo etc. Use grid player app for difficult words.

All the best.

[Jillhb in reply to Mick3849]

Thanks mick

[Shoddie]

Hi Jillhb

My dad had carers coming in 4 times a day, my Mum helped with feeds and I did what I could.

My dad's memory was great but he became frustrated when unable to portray his thoughts/memories through speech. So he became quite right because he couldn't be bothered with the effort, dont blame him 😔

He could be irritable but unfortunately that was with Mum, he was fine with me and most of the care team.

I cut his nails and hair and washed his hair and face but there was never a mention of itching.

Big hugs to you & your dad xxx

[Jillhb in reply to Shoddie]

Thankyou Hun xxx

[Jmt24]

My husband's personality has changed as well, he is quite rude and speaks very sharply to the children, orders them about and has nothing pleasant to say to them. He speaks very little now, and interacts with the family only when he has to. He also has his eyes closed when speaking. He is quite happy though!

[Yanno in reply to Jmt24]

Hello Jenny. The most important words are "he is happy" - in the end that's all that matters for us all. Our loved ones are all going down a slightly different path and we know the journey isn't easy and we can forgive anything if they are just happy. Big hugs to you and the family. Ian

[Jillhb in reply to Jmt24]

Oh Hun thank you that's just how dad is x head down , eyes shut and sharp sorry you're going through it too , it's such hard work xxxx

[Yanno]

Hi Jill, Welcome to the group

It sounds as if you have your hands full - this beast of a condition is so hard at times. I assume you have spoken to your local MSA Trust nurse, if not I would very much recommend that.

Whilst my wife Jackie does not have the itching issues you talk of, I have heard very good reports of Alphosyl shampoo - you may have tried that. I used to suffer with a little psoriasis and itching in my hair and following the good comments I started using it many years ago and have not looked back. If you've not tried it, it may be worth a go.

Take care, Ian

[Jillhb in reply to Yanno]

Thanks Ian will look into this xx

[Alisonleicssupport]

Thoughts with you. Went through all that with my Mum. Her speech thankfully held out pretty much to the end. And we didn't experience too many uti s.

She often complained of itchy scalp, though I don't know the reason. She suffered with eczema all her life so we put it down to that.

Happy to help.

[Pax0]

Hi Jillhb, sounds very much like my Dad, whose speech is really poor, especially when tired. Sometimes even my Mum can't understand him, and she's his full-time carer. He's beginning to struggle with swallowing, getting pills down eg, but not too bad - yet. And he's full-time in a wheelchair and when he gets back from hospital (he's had a fall) he'll be hoisted too. Yep, he gets very sharp and sometimes aggressive espcially with my Mum and sometimes my sister, which is totally out of character. The MSA specialist nurse told me this isn't uncommon, because of changes in the brain. It's a shame, because this isn't how my Dad really is, and obviously it's very upsetting for Mum, who does practially everything for him. Sounds like there are many similarities between our dear dads! However, not experienced itching, but your suggestion sounds feasible. What an awful thing MSA is. Much love to you and yours, and keep positive if you can. Bex.