I am a carer for my wife who has had MSA for about 2 years and apart from hospital visits we are managing the MSA ourselves. Initially Parkinsons was diagnosed but after a period of time this was changed to MSA.
My wife has various symptoms and recently I've starting asking myself is this MSA or something unconnected.
Symtoms include:
Lack of balance especially when getting up
Lack of co-ordination
Speech issues
Sleep issues
Pain in shoulders (coat hanger pain I think)
Unable to walk
I thought it was about time I joined a forum to see what we can expect over the coming years from people who are also going through the MSA journey. We might be able to help and share with others.
Lately my wife seems to lack concentration, I comment on things or ask questions and frequently no reply will come......is this an MSA trait ?
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Derkie54
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Its great that you have joined the site. A very warm welcome.
All of the symptoms you describe (apart from the shoulder pain) my dad has.
As I am sure most people who know about MSA will tell you, it's very difficult to say exactly how the condition will progress. My dad was diagnosed about 7 years ago but we think he was showing some symptoms way before this. He is 82 now but we think the symptoms started when he was around 70 years old. He just put if down to getting older but it was much more than that. Because its a relatively rare condition, it seems to take a long time to get a definite diagnosis.
We started off trying to look after him ourselves but it all became too much as his needs increased. Although he is still living at home with my mum, carers visit him 4 times a day.
Dad's personality started to change quite early on and he seemed to get very selfish which was very uncharacteristic. He also did not seem to have very much empathy. He can't concentrate very well either which is another change along with lack of motivation and extreme tiredness.
Through all the trials and tribulations, he has retained his sense of humour, which is a blessing and he gets comfort from his family around him. It is a real challenge but it's the simple things that make a big difference to him. Just playing his favourite music or sitting reading to him.
I wish you well in your journey and hope that you will make use of the site to get advice when needed or to share any news.
Ps. You mention that your wife doesn't reply to you after you have asked her a question. We found dad was doing this. With dad, it was because he was taking a long time to process the information. We therefore have to repeat questions at times and give dad time to respond.
Understand totally we had all these plans when my partner retired. Sadly not to be . I have fibromyalgia and mental health issues. It’s gone right round the circle from him looking after me to me trying my best to look after him..
Welcome to this site albeit it’s sad you need to be here.
I too retired early to look after my wife and if you look at some of my past posts you will see I too have frequently said this is not quite the retirement we planned. Nevertheless we have found much joy and happiness together over recent years.
Hellebelle has as usual talked with such sense and I can’t really add to her comments.
Have you been in touch with the MSA Trust at all and in particular looked at their website where you will find much information to download.
They also have specialist nurses who are able to give valuable advice. I would also really recommend going along to a local support group where you will find others facing the same issues as you.
Welcome again to this wonderful forum of likeminded people who will give specific advice and support when needed.
I have mentioned support groups but my wife is not that keen at the moment, perhaps later we'll see. I see you also retired early like me, one day at work I thought retiring is the only way forward for us, and when I look back now it was the right thing to do.
We have a Parkinson's nurse coming to see us in action at home soon...... I wonder what she'll think and we'll see whether or not they will be able to provide any support !!
I sorry if I haven't answered everyone's posts but after a busy day you're tired and sometimes just want to sit and have a bit of "you time"
I know exactly what you mean by ‘me time’. That’s probably why so often I post at this time of the night, after midnight!!
I also understand your wife’s reluctance to go to a support group; we didn’t want to get into all that at first. If your local group is like ours however you will be surprised how positive it is. Also it’sa valuable time to share and receive ideas from others who are in the same situation as you.
Hi. I am happy that you have already had some replies from people who have experience of the symptoms that your wife has. As you are probably aware there are a range of symptoms in MSA and it is a bit like pick and mix, everyone’s selection is a little different!
The slow response can be for many reasons, the mental processing, the physical effort of forming words or just not having the emotional energy to reply.
As the others have said in their great replies, the MSA trust nurses and support groups can really help you through this life journey.
Best wishes to you both, Diane
Hello Derkie54, i too am a full time carer for my wife, she has had the parkinsons type symtoms of MSA for the past 5 years, and it is also confirmed to be MSA by a specialist movement disorder Neurologist.
It is seid that everyones journey with MSA is slightly different and indead some people may have more or less symptoms than others. My wife did have all those same self same symptoms you discribe at that stage plus she had issues with continence for many years before that as well (going back some 20 years).
She is now 6 years on and very poorly and now bed ridden full time. I do get her up every day but she has to stay horizontal in a riser recliner chair when out of bed. She is 63 years old.
Thank you everyone for the replies, Kevin my wife has also had continence issues for many years. It is a bit of a downward spiral I think and you just have to make the best of the little things that are pleasant and enjoyable.
Along with the all the messages below from those who have been through this or are further down the road than you... I really feel for you. I can remember clearly this period with my wife. There were so many questions and so few answers. The usual one is .. every case seems to be different and its hard to say what will happen and when. Unfortunately this is a fact.
Gill had all the symptoms you note above and in addition
- her hand writing deteriorated very early
- Lots of "snoring"
- A general increase in pain due to the muscular contraction but this did ease away
- Bladder issues and increasing frequency of bladder infections
- and last to show its self was difficulty in swallowing which arrived with a significant change in speech .
I also retired early to look after Gill and I managed everything for some period but as Gill's mobility reduced it needed a second pair of hands and the local care kicked in. This was about the same time the system generally connects. Occupational Therapy, District Nurses, speech therapy, and eventually connecting to the hospice for day therapy and Marie Curie for support.
Gill survived for 14 years from onset and we tried our best to engage with life every day. There was a lot of laughter alongside some of the more difficult days so i guess my message is try to be as positive as you can and take each day at a time and draw strength from each other.
Lynn's handwriting is not very legible now like Gill was and I have noticed an increase in snoring. It's good to get all these replies from everyone and I thank you all. Seems like it's a different journey for everyone and even the symptoms vary from person to person.
Hi Derkie, welcome to the site, but sorry for the reason you have to be here.
My husband is not as advanced as your wife. He was diagnosed about 9 months ago after we noticed short term memory issues along with ability to walk normally. His affect was also a sign.
He has problems with his balance, lack of coordination, slurring of his words, but is still able to walk albeit a slow shuffle and falls occasionally. He goes to physical therapy twice per week to try and maintain his abilities as much as possible. He tried one drug with no effect so we stopped it. His executive functioning has been affected but his memories are still all there. He gets frustrated over small things and I have to remind him that it is all ok.
In hindsight, there were signs years ago. It started about 10 years ago with him going for walks with the family but always walking behind us. I have since heard that this was reported with others. I believe it was his brains way of watching our feet move and signaling to him to pick up and move his feet properly. Has anyone encountered this behavior?
Anyway, I hope you find this forum as helpful as me. All my best to you.
It seems a lot people have had issues spanning many years and my wife falls in to that group
One exception for us was the walking.
We lived in a house and decided a move to a bungalow would be a good idea, it took some time but eventually we moved and we both felt a sense of relief.
No more stairs, and a bedroom next to the lounge. We had been there about 3 weeks then almost overnight my wife stopped walking.
We tried shuffling with me holding her hands and walking backwards but the balance was not there and she had more falls.
It seems easier now to push her around the home in the wheelchair as well as outside.
So many of you know a lot more about this than we do.......but nobody knows what is coming and when......this is a strange condition MSA !!
Hi Derkie54 It's only the last few weeks I have read up and educated myself on MSA disease because like your wife, my Dad of 59 was diagnosed 2 years ago with Parkinson's disease. Yesterday, we got our proper diagnoses of MSA. I wanted to know it was that, because I knew it was that!! But then our worst fears came true.
My dad also has very similar issues like your wife. Some others of his are stomach cramps (80% of his day is spent in pain), deteriorating speech, swallowing issues, very bad sleep patterns such as kicking out, horrible noises etc, shuffling steps, change in posture, incontinence issues. The list could go on!!
I have also noticed lack of concentration in my Dad. We ask him things and it's like he's 'away with the fairies'. Sometimes he doesn't reply and sometimes he just responds 'yes' to everything. I know what we have said hasn't actually been taken in.
It is such a sad disease and I've come on here to meet other people in similar situations.
Away with the fairies is a good description, it's as if they are in their own little world isn't it. Before my wife stopped walking she also shuffled just like your Dad.
I read other posts frequently and think yes that issue applies to us as well.
As a carer you go through all the emotions such as frustration, guilt, lack of patience & sympathy etc etc
I'm not sure I'm very good at all this (supporting my wife) yet but I'm doing the best I can to help.
We are constant companions now with different ideas on the way forward on this ever changing condition.
Good days, bad days I'm sure this applies to everyone here.
As for the future............I don't look that far in front, just enjoy the present as much as you can with your Dad Zoe.
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