MSA support

[Ballymoe]

Hi All, my dad was diagnosed 6 months ago although he has been treated for Parkinson’s for 3 and a half years they have now diagnosed him with MSA. In the last few weeks he has suffered with bad hallucinations and convinced that he has work to do and we are finding it hard to reassure him that he doesn’t. He is 76 years old and really struggling. The GP and consultant are changing medications around at the moment trying to control he’s symptoms but I was hoping for some advice for anyone who is going through something similar

Thanks

[Yanno]

Hello Ballymoe. Welcome to this group albeit as always it's sad you have to be here. We haven't had to face issues with hallucinations at all however I am told this can occur if one has a UTI. I assume your dad has been tested for a urine infection?

Also, have you spoken to your MSA Trust specialist nurse, she may well have some advice to give?

One thing we have been through is Jax having night terrors - these have been effectively controlled through using Clonazepam which was recommended by our Trust nurse.

This must be so worrying for you and so I hope you find a solution. Do let us know how you get on. Take care, Ian

[Ballymoe in reply to Yanno]

Hi Ian thank you for your reply,

Yes dad has been checked for UTI and bloods taken to check if he has an infection and nothing has shown up, we have repeated a few times. They changed he’s Parkinson’s medication just over a week ago which helped a little but he still thinks he’s working on a building site and that he has to finish work before he can go to bed, he’s gets agitated love him.

Since the change in medication the night terrors have got worse, last night he started on a low dose of Quetiapine and he said he slept all night and is feeling relaxed this morning.

I haven’t spoken to the specialist nurse yet but I did contact the MSA trust yesterday so hopefully I can talk to the nurse soon.

How long ago was Jax diagnosed? How do you cope? I hate getting frustrated with dad I know it’s not he’s fault, he will call me anytime of the day and night and wants me with him all the time which is putting a strain on my marriage!

Thank you so much for replying to me

Lou

[Yanno in reply to Ballymoe]

Hello Lou, Jackie, my wife, was diagnosed in 2015 having previously been dx with a stroke. Luckily we were in a position for me to retire and I am now her full time carer. We have always been very close and at the moment I wouldn’t want anyone else but me to care for her.

Luckily, she is still very alert and her memory of people and places is better than mine. We have been able to travel extensively and we still try to do as much as we can.

My heart goes out to those who are looking after mum, dad or a sibling as to me that seems so much more difficult. All you can do is be as positive as possible, give what time you can spare but remember your life has to come first - that’s what your dad would have wanted before this beast of MSA caught up with him. Give yourself some time and space and don’t forget worrying never solves anything.

Take care, Ian

[Ballymoe in reply to Yanno]

Hi Ian,

Thanks so much for your kind words. I was my dads carer for 18 months as well as a full time job until he went into hospital and when he came out I was unable to care for all the needs he now has. We are very lucky we have amazing carers who he loves, he calls one he’s angel!! I’m just recovering from pneumonia which the doctor said I was running on empty and had to slow down but it’s so hard when he calls and says he needs me, it’s just heartbreaking to hear and see him stuck and not knowing what he should be doing.

I felt the same as you I wanted to do it all but there will come a time when you will need some help and support and you must accept it because you need to be fit and strong to be there for your wife, I don’t know what I would do without dads carers now although it was hard to adjust at first.

I have followed your advice and contacted MSA trust and they said a nurse will contact me soon. Thanks again for your advice.

I hope you and Jackie are planning a nice get away soon

Lou

[Hellebelle]

Hi Ballymoe, I am sorry your dad is going through this. I can't add anything to Ian's post and advice. Dad has never had hallucinations, so I can't give any insight into this. I really hope your dad can get some relief from these. Wishing you a the very best. Please let us know how you get on.

[Ballymoe in reply to Hellebelle]

Hi Hellebelle, thank you for the reply, I am starting to think that this hallucinations and delusions might not be caused by dads MSA, I am taking him to the GP this morning to see what they suggest but I will contact the specialist nurse like Ian suggested and see if that can advise me. It’s so hard and I hate to see the big strong man being taken bit by bit!

Lou

[Diane831]

Another family I am in contact with had an MSA diagnosis following Parkinsons diagnosis, but he started having some weird mental states and eventually had the diagnosis changed again to Lewy Body Disease. I really hope that this is not the case but it might be worth having in mind and asking for it to be ruled out if the doctor doesn't have any other suggestions.

Best wishes, Diane

[Ballymoe]

The GP had never heard of MSA surprise surprise! Dad had to change he’s GP this morning due to him moving into assisted living. He had been seen at the neurologist hospital and had an MRI scan of he’s brain and a memory and function test and that was when they diagnosed MSA, would they have picked up Lewy body from the MRI?

They started dad on Quetiapine 12.5mg last night and for the first time in years dad slept right through the night and said he felt peaceful this morning so that is great news!

Can I ask everyone do you notice bladder and bowel problems? Poor dad is suffering and they are talking about a catheter being put in soon.

[Yanno in reply to Ballymoe]

Lou, if you look on the MSA Trust web site you will find a fact sheet about bladders and bowels. Unfortunately it’s a very common issue with MSA. Many find it difficult to empty their bladder which can lead to a UTI. We locally have a continence nurse who has given very good with advice on this.

Ian

[TK-67]

My mum suffers from REM Sleep Disorder, and has also experienced severe hallucinations. We are extremely lucky to be supported by an expert in MSA, this has been helped with reducing the PD drugs, they react differently in MSA than PD, also there is now an antipsychotic drug used, alongside sleeping meds as mum is now quite advanced but just reducing the PD meds helped massively. Mum also had a PD diagnosis first so was on a lot of medication for this....her consultant at the time was not an MSA expert and we went through a very difficult time dealing with this. Sadly most medical professionals will see very few MSA cases especially GPs. Everyone has very different symptoms though, it is though possible with the right support to manage these better. The MSA Trust nurse looking after your area may be advise further and also in getting the right support around you and your dad.