Hi!

[Wildshire]

Mum was diagnosed with Parkinson’s Disease in 2018 but the medication she was prescribed has really not been helping. In January she saw her consultant again who concluded that she either had Parkinson’s plus or MAS. I understand that it’s difficult to definitively diagnose but she exhibits every symptom and has now had contact from the MAS nurse so I guess that’s what she has. I live quite far away so we are dependent on carers, friends and health experts but I could really use some help in getting to grips with the disease and understanding what’s ahead of us.

[Yanno]

Hello there and welcome albeit, as always, it’s sad you need to be here. I think the best place to start is the MSA Trust web site. That has a load of information which will help you initially.

Always remember however that just because one person has particular symptoms, it doesn’t mean your mum will have them. Every journey is different.

Everyone in this forum is here because they have an interest for one reason or another in MSA. Just ask away and I’m sure someone will either have the answer or will point you in the right direction.

Take care, Ian

[Wildshire in reply to Yanno]

Thank you so much for responding... honestly I am still processing.. and trying to accept that mum will only get worse. I have a family of my own and so I need to be brave but... the reality is I only feel sad. I am mourning the person she was and the thought of watching this amazing lively active person wasting before me is unbearable

[Hidden in reply to Wildshire]

You're allowed to feel grief right now. Courage will come when it needs to, through the love that you have for your mum. over time you will develop a network of people you can lean on when you need to, and ways of managing sadness. One of the things that comforts me is that some of Dad's carers have only known him since he's been really quite disabled, but they can still see, and respect/appreciate him for the person he is. It's like MSA strips things back to their essence. But there's still meaning and love and even joy to be found there. Xx

[Wildshire in reply to Hidden]

Thank you... Mums carers seem lovely too though all are very young and inexperienced sadly. You’ll know that you can’t rush someone with MAS and they have exactly half an hour with her morning and night. I helped her to shower when I was last up and it took us an hour and a half. We were coming to terms with Parkinson’s... this is a whole new ball game. I just wish she was pain free. The meds she’s taking are doing very little to help with that.

[Hidden in reply to Wildshire]

Sounds like it might be time to ask for a review of her care package.a representative from a local advocacy organisation for older / disabled people can be really helpful with this. It sounds like an occupational therapist from the council should be on board with regard to assessing her shower routine/equipment etc.sorry I didn't feel able to give any specific suggestions with regard to pain because it is quite individual, but definitely something worth flagging up with hospice/palliative type services because they can be creative with pain relief in a way that sometimes other medical professionals can't. It can feel challenging knowing there is stuff out there but not knowing quite where to start, especially when there's grief going on. Just keep phoning and asking questions of people and eventually it will start to make sense! Kx

[Wildshire in reply to Hidden]

Yes I am definitely going to become a pain in the ass with all these care representatives! That’s the general vibe I’m getting, that no one really knows what to do here (except the MAS nurse who has arranged more aids for mum in her house). She got more drugs this week in her dosset box but with no explanation as to why or what they were for!

[Hidden in reply to Wildshire]

It's usually the GP that issues new medication so feel free to phone them up and ask them what's the plan! 😋

[TK-67]

Hello... I've been in exactly your position. Mum was re-diagnosed in Aug 2019 from Parkinsons to MSA. Don't be worried about asking any question you have here. When I first arrived everyone was really supportive. Make sure you have support for you too, it is hard. I was lucky that our local hospice offered me counselling which has really helped. One thing is to try to get an expert consultant - our first one wasn't & mum really struggled. We now have one who has been amazing with the juggling of drugs. Can I ask where in the UK you are?

[Wildshire in reply to TK-67]

Thank you! It is really helping to ‘talk’ to people who really understand... Mum is in Aberdeenshire. And you're right... her consultant is actually a stroke specialist. She wasn’t seen at all last year and the PD nurses stopped visits in March (all were brought into hospitals to deal with Covid). I was worried about her so I drove up and paid her a visit in the summer and was so shocked by her deterioration that I called her consultant and the nurses and finally, the consultant had the nurses go check on her in October. That’s when they realised she wasn’t just suffering from anxiety (that’s what they were all saying believe it or not).

[Bruce7]

Hi I care for Jan my Partner ,How i handle it, is one day at a time ! planning just goes out the window, I can't /don't want to think long term even though i know what's coming i'll just get too depressed. I'm here if you need to talk. regards Bruce

[Wildshire in reply to Bruce7]

Thank you very much! Here for you too! This week I’ve spoken to mums consultant, her GP and MSA nurse Katy (who was great and really took time to explain about meds/blood pressure issues and make suggestions re pain relief). Mums been in a lot of pain with muscle spasms this week and is feeling too sick to eat much so I’ve had to try to rally the troops (health professionals)! It’s looking like we will soon need to think about getting more carers in but as you say it’s hard to plan, we just have to take each day as it comes..