I haven’t posted anything for quite a while . We’ve just been trying to ‘get on with it ‘ . When my husband was diagnosed with MSA -C nine months ago I felt like the bottom had fell out of our lives . There was so much to come to terms with and financially things were hard as he cannot work . The house went on the market and I struggled with juggling everything . Until about 3 weeks ago things had improved , we now receive benefits which is a weight off our shoulders , we can stay in our home and I felt more at peace again . I thought all I need to do now is focus on Richard and the illness and with just that I’m fine . Then back down I go !! I work as a cater on a zero hours contract and I so enjoy it . I had a great group of people and a good amount of work . Suddenly I lost 3 clients , one died which I found really upset me . Now I feel I have to pick up extra hours on my day off and weekend off and drive to the same place 3 times in in one day . I have to make up my wages . I have just received a new job offer which is good but I’m feeling apprehensive and a little sad about leaving ‘my people ‘ . I need more security though and proper time to spend with Richard . Typical woman I’ve waffled and now choose to ‘get to the point ‘ 🤪 I always refer to Richard as Practically Perfect in Every Way , he is the loveliest man , always happy , never down , never moody , always so patient . That’s changed he becomes demanding , suspicious of where I’ve been , why I’m late , looks at my phone and last week swore at me ! If I cry he doesn’t seem to care and doesn’t always try to help me as much as he could . I spoke to our Neurology Nurse and oh dear the MSA affects empathy and becoming self absorbed !!!! I know I’m supposed to stay up beat and positive but I’m finding it soooo hard . I have chosen to research MSA at length to understand and feel as well equipped as I can to help me understand and cope . I knew NOTHING about the mental side of things . There doesn’t seem any information and lately I just feel hopeless . No matter how hard I try there is nothing I can do to beat this thing . This illness is taking my husband away right in front of me . The physical things are fine even the toilet accidents are fine but dear God what else do we have to endure . Some days I really don’t think I’m strong enough to get through it .
Feeling hopeless: I haven’t posted... - Multiple System A...
Feeling hopeless
Hi, I am so very sorry that you and your husband are having to endure this. My father has MSA C and what you describe is very similar to what he is ensuring and my poor mum has had to endure also. My dad was the kindest, sweetest person you could meet but since the condition has become very self absorbed and what you could describe as selfish. He shouted and swore at my mum so many times and so aggressively that we were worried for her safety. He became argumentative with us his children and we were apprehensive about saying the wrong things. We read all we could and discovered that the condition effects empathy and their whole mental state. It seemed like the final blow as by then, dad was more demanding physically and mum couldn't manage him as they are both in their 80s.
We decided to take matters into our own hands in their best interests. We consulted with them all the way along and despite my dad refusing to have carers we had to intervene as it was making mum ill. She had a mini stroke and we decided if could not continue. Dad spent some time in the local hospice for assessment as he was sleeping for days on end and then becoming dehydrated. The palliative care Doctor at the hospice was very understanding and organised for him to be assessed for CHC funding. During this time we managed to get some respite for mum and she goes to choir and a social group each week. Dad now has care 4 times a day and so all the physical care is done by them.
Dad is now on a different plane and seems to be calmer and more accepting. Their relationship has benefited so much from the help and support of their local hospice and we could not have done this without them.
I was wondering if you had a palliative care team you could consult based at a hospice near you? They also offered day activities for dad which also have mum a break.
What we have learned in our journey with this horrible condition is that it is too hard to do alone and that without the support of the various health and social care professionals and the hospice, we doubt whether mum and dad would still be living together. They have a much better relationship and although there are still challenges, they are able to have a much better quality of life.
Please let us know how you get on and I wish you well.
Thank you for your reply and understanding . We are seeing our Neurology specialist nurse next Thursday , she has mentioned a group at our local Hospice before but not followed it up I will ask again . Richard isn’t at a stage for anything else really at the moment although I am waiting to hear about a course at the Nuffield Hospital which should help with the mental side of things .
Hi, we found it hard to engage with the hospice at first because we felt it was associated with dying but did not want to acknowledge this. What we found was very different. They celebrate life and are all about making the most of the life you have left, not just for the patient but for the wider family.
I hope you find their support helpful.
Helen
Hello Nicky. I am so sorry that you and Richard are having a difficult time. I was just about to reply to your post when Helen's reply popped up and she has said much of what I would have done.
Your local hospice will be a great source of support and their teams are used to helping with all aspects both physical and emotional. Our local hospice in Worcester has a wonderful team of nursing, physiotherapist, caring and counselling staff. When we visit St Richards we feel uplifted, supported and cared for - I would really recommend that you make contact with your local hospice if you have one.
Helen has made a very good point, as always, about carers. We were very lucky in that I was able to give up my work to become a full time carer for Jackie. We are so very close to each other but the demands of this beast of an illness does demand so much from the carer at times. I hate to think how I would cope even if I worked just part time.
Getting back to Richard, I think it must be so difficult for him, as it is for all sufferers. He's gone through a long battle to discover why he's ill, he's had to give up his job, rely on you totally for financial as well as caring maters and is facing a very uncertain future. Sometimes in these situations we hit out at the ones we love the most because we don't have anyone else to hit out against. Having others in the circle - carers, the hospice, counsellor - will help spread that load and hopefully let you spend more time being his friend and loved one.
Let us know how things go,
Take care, Ian
Thank you for your reply and understanding . Believe me I am so patient with Richard because I love him with all my heart . I am proud to say when I get angry , frustrated and tired I have never lost my temper because I know it isn’t his fault . I had cut Richards hair for ten years before we became a couple . We both had unhappy marriages before . We have been together now for 7 years and it has been the happiest of my life . I never knew there was men like him I always say ‘ I don’t know what I did to get him but I’m bloody glad I did it ‘. The change in his personality is harder than the physical for me . The illness effects so much in our lives and at the moment I’m struggling . I wish I could spend more time with him but I have to work . I’m in the process of changing jobs again because of MSA !! I am on a zero hours contract and need more stability , because although I am lucky and Richard was sensible and paid into 2 pensions we still need a salary coming in . If I could I would stay where I am but as I said MSA has taken over .
Am so sorry things are so tough for you. I think others have responded to you so eloquently- my partner has MSA P it is so difficult and we are just over 1 year in with dealing with this beast. I have to stop myself sometimes and remember ‘this’ is not him - it’s the beast trying to take over. I know as his health declines it’s going to be harder but I will have to get support. There is no way I will be able to manage - I have to work too. But I won’t let MSA rob us of everything - we take joy in little things and try to share lovely moments together as much as we can. Keep talking , reach out and connect with others on here , a support group, carers groups, the hospice, FB forums etc .Look after yourself and ensure you find time to relax somehow.
Take care x
Nicky
Sorry to hear about how life is throwing you curve balls.
The way I cope with my Sue and her insecurities is to put myself in her place.
She is sat at home all day not able to do anything and I am off being normal all day enjoying myself. Of course she feels it's not fair and when your like that you take it out in the one closest.
All I do is be totally honest and open, manage her day telling everything that is going to happen. Ring one or twice a day and adapt my plans to accommodate her. But at the same time try to maintain my indipendance and do things for me or I will go nuts myself...
I use carers and hospice for support and introduce these to your partner and talk to him about him about what's going on to him and you.
Remember it's frustration that's driving your partner not the condition...I've never seen it affect personality like a stroke only frustration and anger at inability.
Work wise what's more important.... Time, friends partner or money... Workers come and go money comes and goes but time is precious and partners.....
Keep strong and patient yourself.
Paul
Thank you for your reply . When I’m out I am working and don’t really do much on my own , as I feel it’s not fair when Richard spends so much time on his own . I do ring him during the day but I have no choice but to work . I think the loneliness is the worst thing , he has too much time to think . I am very patient and understanding with him because I love him so much . I just hate the condition what it’s doing to him and to our lives . I’m struggling at the moment but will stay strong and hope things improve .
Hi Nichod100,
I am glad you posted how you are feeling and that you have had some helpful replies.
The first thing to remember is you are not alone, there is help out there, it is just hard to find sometimes.
The second thing is, no one person can manage this on their own, no matter how much you want to, it isn't humanly possible.
When you see your Neurology Nurse next, do ask her about help that is available in your area. Social services will be able to help. Hospices are wonderful places- only about 5% of what they do is end of life care; they offer counselling, will help you get your head around a life limiting diagnosis, symptom control, some offer respite, day care, complementary therapies and much more. One of the good things about them is they look after a family unit, not just the person with MSA.
You can also contact the MSA Trust nurse for your area, our details are on the website or you can contact the office if you are not sure who to speak to.
Kind regards,
Samantha. MSAT nurse specialist.
Nichod, hello
I feel so much for you.
This is probably a bit of a generalisation, but to-date, I do not think that some of the more extreme mental effects of MSA have been discussed very much on the forum, as I think they are less prevalent than other symptoms.
I think that there are sufferers whose mental issues go well beyond the 'to be expected' anger and depression that anyone is going to feel having been diagnosed with MSA.
The first thing to do is to try to deal with Richard's depression, if you have not already. Anti depressants make a huge difference. My husband John took Mirtazapine and Citalopram.
The self absorbtion, total selfishness, manipulation, and at times violence, are extremely hard to deal with. I found them much, much more difficult than the physical challenges. What can make things even more difficult is that these symptoms may be managed in front of other people, so no one else is seeing what you are dealing with.
As everyone has already said, you need to get as many people involved as much as possible. You also need to be totally open about the mental issues, and answers like, 'it is a part of the disease' are not good enough. Unfortunately I have to say it will only get worse. John's mental state pretty much broke me, and I like to think I am a tough cookie. I also did not have the work and financial issues that you are struggling with.
A few months ago I was reading an article about James Cracknell, who suffered a frontal temporal brain injury. He behavior patterns reminded me hugely of John. I researched MSA and Fronto Temporal dementia and MSA. There are some very strong links.
John had the genetic test for Fronto Temporal Dementia, which was negative, so this was ignored. However, only 20% of Fronto Temporal Dementia is genetic, meaning John could still have been suffering from it. I am 95% certain that John had un-diagnosed FT dementia along side his MSA. I am not sure if its effects could have been mitigated had he been diagnosed, but I do know that dealing with him, particularly in the last 6 months was appalling. He spent a large amount of that time in our local hospice.
I know this is really frightening, but ask all these questions, as dealing with something you know about, is easier than thinking you are alone, and everyone else thinks you are over reacting. It has taken me a while to write about this, and I hope it helps.
Amanda
a
Thank you for sharing your experience. As a family, we have observed changes in my husband’s behavior. Social conversations are difficult since he rambles at times and does not connect his thoughts. Extended family have noticed as well. People stay away from him because they know something is terribly wrong after a brief conversation. I have also looked at FTD and I am worried. I would appreciate any other insight you can share.
HI
im not sure it helps you much at the moment but Richard's current phase will pass. It helped me to understand that each phase of the journey is different and in some ways not everything gets worse.
i would draw as much on the Hospice as you can. They usually do wonderful counselling sessions and often have carer groups where you can lean on each other.
Not sure you can do it but i shortened the daily visits for the carers to one hour each , twice a day ( i find that i am ok with that and Gill is cared for very well during their visits) i then restructured the hours so that one day a week someone comes and sits during the day . it allows me to take the dog out for a proper walk.. go and get lunch with family .. just get out and breath
i hope you feel all the empathy and care for you that is going out to you from this site!
Not what you're looking for?
You may also like...
Feeling isolated & not being listened to.
Feel like giving up
Appalling Treatment by medical professionals
Just introducing myself
Just Introducing myself
Just want to say Hi.. 
My wonderful father and MSA
Wheelchair accessible vehicle?
Frequent falls when knee gives out
In need of some support
