I’m Zoe, and my Dad was diagnosed with MSA yesterday (13/1/2020). After his initial diagnosis of Parkinson’s disease 2 years ago and a very rapid and questionable decline we finally reached our goal of finding out the truth! I had researched Parkinson’s and MSA had cropped up along the way... the more I read into it, the more I just knew.
Now for the long gruelling road ahead.... my Dad’s speech is very bad (only one of the many symptoms), phone calls are almost impossible. I find myself being the interpreter between him and lot of people such as Drs, his Dad (my Gramp) etc. This is scaring me the most at the moment. Losing that communication with him. Also for his two Grandchildren that I have.
I guess I’m just looking for like minded people along this journey. I am terrified !!
Thanks for reading.
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ZoeSweet7
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Welcome but sorry you need to be here. Please don’t be terrified I am sure you will take it in your stride.
The first place I would start is by joining the MSA Trust and mining there web site for all the very valuable information there. I would also get to know the MSA specialist nurse for your area - whilst they don’t make home visits they can be an invaluable help at times. They are quickly available for advice and unlike most of the other health professionals you will meet... they know and understand MSA.
There are many in this forum who have been through the issues you will meet and they can give useful advice.
The other best bit of advice I can give is best positive’. Life with the beast of MSA isn’t what you planned but that doesn’t mean you can’t still have some good times and put down some memories you will treasure for ever.
Thank you for you response and kind words. They go a long way and I already, after a few replies to my post feel a bit better about all of this.
I registered us with the MSA trust yesterday so look forward to all the info and help to come our way. We also have a support group local to us which I had found out via the website. Very useful.
Dad is over this weekend with me, my husband and children. I know he loves it! It's the only time I ever really see him smile. Which is priceless!!
Thank you
Zoe
Hi ZoeSweet7, we have all been there and quite frankly it is not going to be easy for you, my advise is to go somewhere and have a dam good cry and let it all out until you can cry no more. Then pull yourself together and be strong as you can as you have got some hardwork ahead of yourself thinking on your feet all the time of ways to help your dad both for himself and how he interacts with the rest of his world. Multi tasking for him is the name of the game, so get your emotions out the way now so you can be strong and at the top of your game when needed. I find one of the best strategies with comunication is to tell others to ask questions that require a yes or no answer so they can nod or shake the head, when things become difficult. If you have to ask a multi choice question than list all the choices first, then go back and ask again so a nod can be gained for the right choice. You will find, like the rest of us, that you have to become the expert on this conditionand you may have to teach the nurses and GPs about this condition as they may never have come across it before. I am oftern refered to by our medical team as "the expert" and they follow my lead in what is needed, and this is all down to my research on websites like this, and the MSAtrust downloads.
Thanks for the response. Yes, I think you're right there, I need a good old cry!! I haven't really had time by myself to think and process it properly and accept the fact that time is precious. I knew it was far too bad to be PD for the last two years because of the decline in my Dad but I always thought 'He will get over it' and 'he will get better'. But the truth is he won't. I'm glad I found this site, I do feel better about it all already. With this support, it's strange how positive you can become!
Yes I understand you there. We have started to keep things short and sweet for Dad. Engaging him in conversations and having a laugh but keeping things to yes and no. He never was too much of a big talker anyway!! So at least I know he doesn't think we are treating him differently.
I agree with you there. I have felt the same! I feel like quite an advocate for it. I did so much research and watching videos of it to gain understanding. Before the diagnosis I was putting letters out to health professionals, I was telling them to their faces how it was not inline with PD and so on... felt like a know it all but hey I got the answers we 'needed'.
I think you are on the right track and having the right aproach to it all. We got absolutely no were with the NHS for a long time and i eventually paid to see a professor of movement Neurology. He did a dumb diagnosis, where he took no history into account but just went by the symptoms he could find, it took him 20 mins to figure it out. I now know for a fact that even if an NHS doctor suspects it may be MSA that they are not aloud to say so until they have treated the patient for PD first and that the treatment fails, which may take about 4 years.
Once my wife had the diagnoses i knew i had to be strong for her so i let it all out and got the crying out the way, then pulled myself together and decided to make the most of what we could, i bought a motorhome so we could go anywhere we wanted, it was difficult to shower her in the little washroom but at least we had a toilet to hand all the time. We visited many people and holidayed a lot until it could no longer be done. Sold the motorhome then and spent some of it on good care equipment (uk council OT, and NHS OT can provide most of it). Above all else we made everything to seem as normal as possible, and you cannot do this successfully if you are being emotional at every turn. We did join the local PD club, which was just 2 miles away, and we had a good time and a laugh with them all, even going on week long specialist disabled hotel holidays together. Goodtimes.
Staying strong for 2 and multi tasking for 2 is not easy but it can easly be done if you adapt and overcome.
I can really identify with how you are feeling as I have been there and still remember taking my dad to Oxford to get his diagnosis. I felt as if the bottom had just fallen out of our world.
After many tears (mostly from us) dad has remained mostly stoical throughout! we decided to make it as good as it can be.
You find ways of communicating without words. The Speech and Language Therapist helped with providing communication flash cards. This worked for a while and now dad can still say yes and no and thumbs up, thumbs down. He smiles with recognition. We also use music a lot to soothe or for pleasure. My mum sings to him, which she had always done.
We were dreading this phase but as Ian said, you do learn to take it in your stride. We found the most important thing is to include dad in conversations and talk to him, even if he sometimes can't reply.
We too got our diagnosis in Oxford. At the John Radcliffe. I'm sorry your Dad ended up with this cruel disease also
Brilliant, I'm sure we will get the flash cards and so on in time to come. I'm sure it won't be too long. My dad says things as if nothings wrong with his voice box and without thinking that it doesn't sound like it used to. We are all forever saying 'Pardon' 'What was that?' to the point I feel so bad for him because we sometimes have to pretend we know what he has said, or we take snippets of what he said and can somehow respond to what we think was said. Sorry if that all sounds complicated, I wasn't sure how to word it haha
Also, he was going to speech therapy but I think his anxiety had got the better of him. He never really goes anywhere or is willing to go anywhere unless I am the one to be with him. I've got a lot of commitments but I'm trying my best.
Yes, you're right there. They're still very much involved just like they were when they were their normal healthy selves.
Hi Zoe , yes it is so hard, the speech thing, It is so hard to understand my dad now, my mum struggles a lot more , as she is with him every day.
My son is patient and makes an effort when he is around
We try to make sure when we are out with the family to include him in the conversation and sit him in the centre, but yes go off and have a good cry as it is so unfair and sad this condition, fortunately my dad didn't get bad until he was 80
There is an app on the iPad (if he can use one) which you can type sentences in and then it speaks for you, you can save them
I will take your advice on board. I think it’s so easy for people to exclude (not intentionally) others when they cannot talk or if they don’t show much interest or enthusiasm. So I will make sure none of that happens !!!
Zoe - sorry to hear that but diagnosis is always hard. My hubby still has not accepted his MSA diagnosis from last year. His speech is also worse and phone calls to his daughter are just about impossible. He does whatsapp with her instead or I have to interpret! The PD nurse can still help you as well as the MSA nurses with help, hints and tips.
I hope he accepts it one day and comes to peace with it.... If possible?! I can’t imagine how they must feel. Breaks my heart.
WhatsApp is a good idea. I don’t live with my Dad so Facebook messenger or texting is our go to at the moment. Often he calls me like he always has done but they’re difficult, very difficult!!!
Brilliant, didn’t know that. The more help and support the merrier!
Sorry of course to hear you on this forum as MSA has now changed all of your lives. The fact you're here is good because you can find help, advice, tips and ears who listen.
Luckily my wife and I have lived with MSA for over 10 years now and speech is not a great issue, but it is getting harder for her for different reasons.
We got the speech and langauge therapist involved who put us in touch with AST ( asisted technologies) who have a wide range of solutions to help with communication. The simplest solution is an electronic massaging device ( and some can speak for you ) and a book or card of words and sentances that can be pointed at. But as everone says the fact someone canty speak does not mean that should be excluded from anything, its just things may get slower.
Thank you for your kind words and helping me to feel at ease. I’m glad there’s plenty of options and I’m sure we will be exploring those in the future, possibly near future?! I’m just so sad I won’t hear his voice anymore. This is such a cruel disease. Already after 2 years (plus some more if you include first signs) my Dad is becoming a shadow of himself.
I will make sure to keep him centre stage and include him just as before.
Hi Zoe I understand just how u feel I was the only one that could communicate with my dad but I’m struggling so much I’m finding the more information u give my dad the harder it is for him to get words out we have a flip chart that has pics for my dad to point to this helps to get to the subject then we wing it from there maybe give that a go I do feel your worry as I hate leaving my dad not knowing what he’s saying hope this helps x
Thank you for your reply, I’m so sorry your Dad has this and I feel for everyone here in whatever way they’re dealing with MSA.
Ahhhh!! We obviously never thought our loved ones would come down with something like this, but it hits hard when it does. I hope you are coping and your Dad too of course.
We do a lot of winging it too..., sometimes I’m left feeling guilty because I feel like I’ve just ignored him or shut him down if I respond something completely irrelevant or I just nod and agree. God, it’s such a task.
This MSA is not easy, it takes a long time to diagnose by the looks of it with patients being told they have PD first. I spoke to one doctor who said what is MSA so it's not a widely understood condition. Welcome to the forum I find like others that once all this has sunk and you have accepted the position you're in you have to try and enjoy the good & happy days.
I’m struggling a lot Derek. My Dad just seems to be in constant suffering. He can’t relax, he’s constantly in pain, I look at him and he has this glare in his eye and there’s nothing I can do to change it. I’m doing the best I can to try to make him happy.
I’m sorry to hear that. I hope you are dealing and coping in some way.
We are working on POA’s, communication is very difficult and I’m struggling to understand him. I think I’m going to have to speak to him via text for this one ugh Thank you Peter
Welcome to this fantastic forum, albeit one none of us really want to be a member of. But the people on here are genuinely so amazing and knowledgeable.
Sorry that your dad has been diagnosed with MSA
it really is a horrific disease.
The journey ahead for your dad and your family will be a rocky one. So accept every thing and anything people offer you.
Ask your dads GP to refer you to the neuro physio and Occupational therapist (OT) and also the hospice. The hospice will treat anyone with a life limiting disease and they will offer you all treatments and some time out for you all.
Your dad will have some fab days and not so good days, but take the rough with the smooth but make everything day count. Make as many memories as you can.
He has physio appointments coming up and waiting to hear from OT. Thanks for mentioning the hospice, it isn't one I had thought of. There's so much going on and so many people involved it's confusing me. I spoke with the PD nurse earlier and she is helping us to dwindle down all these people so we know exactly who will be dealing with Dad.
On Wednesday I am transferring my Dad's doctors to the town he now lives in. Even though it's only 10 mins down the road from where he was before, it is in another County. Making home visits etc difficult because he isn't covered where he currently is. He has a partner but doesn't seem like she's being as proactive about these things as she should be.
It always feels strange welcoming someone here - I'm fairly new too, my mum was diagnosed last year and we've had a tough time, one of the places I always come for support is here. I won't hide the fact that it is tough, we've struggled to find the right information, the right care - with a rare condition like MSA, you constantly have to educate people, there is support, but you do have to shout a lot to get it. Do you have a Neuro Specialist Nurse, we've had mixed results with them and it does vary by area (shouldn't!!!) . they can help to co-ordinate the care and support you'll need - speech therapy, OT etc. We seem to have a good one at the moment and she's going to help to get advice from the specialist (who we can't get an appointment with for 2 months!) . Mum's fairly advanced too and now looked after in a nursing home, we can't wait to get advice, we and the nursing staff need quick decisions about her meds etc.....all very frustrating.
One thing to keep you focused, every day is different, MSA is a beast, it takes, lulls you into a false sense of security then throws curved ball after curved ball! Never be nervous of pushing and saying what you think... YOU know your dad better than anyone and how his condition affects him, it takes strength and its exhausting but I don't feel I have a choice anymore and it does pay dividends in the end. Just take each day as it comes....take and cherish the good times and deal with the 'not so good' times, we don't call them bad anymore...we just deal. Treasure small things and moments, me and mum watched the sun set yesterday...that was what the day was about not the other things....
The MSA Trust nurse has also been a source of support and I'm having counselling support at our local hospice.
From your replies it looks like you're a lot like me - you don't rest until you've sorted stuff! Just make sure you look after yourself and deal with your emotions too. I have great friends around me who let me shout and let it out and a supportive employer as I never know when I might be needed and it does get overwhelming.
Take care and we're here - whatever the question, small, big, silly.....we've got the answers or can point you in the right direction.
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