Hi all.. My names Angie.. my husband Mark has been diagnosed with MSA August the 22nd last year.. even the remember the time!.. I'm 45 and my husbands 54.. We have a 8 year old little girl..Esmae.
It's been and still is a very scary time for us.. I noticed my husbands health deteriorating way before our Probale diagnoses..(now understood no conclusive diagnoses until brain is collected ) but our lovely professor James of addenbrokes hospital Cambridge is as certain as he can be.. that it's MSA-P and my husbands progressive syptoms are clear. He struggles to walk and is very rigid in his motion.. He's unable to work as his exshaution and constant pain puts an end to that.. He suffers with drops in blood pressure and has to wear his tights!.. and suffers with R.E.M. Sleep disorder.. So night times are very interesting. .. our Docters and oc centre have been very proactive and dependant on the information sent from the MSA trust and Samantha has talked in person with our nurse.. our home now looks like rail city and I have to use a step to get on our toilet.. tee hee.. now we brace ourselves and collect a memory box for our daughter taking every day as it comes.
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Hello I'm glenn and your husband sounds almost a mirror image of me . My wife and I face each day as it comes. We laugh as much as we can after all no good worrying about things you carnt fix. Good luck with the memory box , I hadn't thought of that and I have four grandchildren. One is six months old.
Hi Glen.. yes some days as you know are really tough.. We are trying to still come to terms with the diagnoses.. it took a long while to come and I was noticing Mark was not himself way before the result.. but yes are alarmed with how progressive the condition is..
We are determined to enjoy as much time together we have.. and laugh as often as we can.. Esp for the little one,..
Yes get busy on the box's, We are collecting memories.. its a lovely thing to do.. and a wonderful keepsake..
Also looking into voice banks.. be much nicer that if and when Mark loses his speech.. that its still his voice.. be it through an app than someone elses..
Hi Angie,I'm sorry to see that your husbands symptoms are so bad, so soon after diagnosis. Having spent 10 years caring for my partner, I think we were lucky. He never had any pain and slept every night with no problem. Apart from the occasional leg movement.
I wish we'd thought of the memory box. But we have loads of photos, and had lots of happy times.
Hello Angie and Mark...We remember well the day that Jax was diagnosed, the date, the time and even the weather because having had a coffee at the hospital, a little cry at the thought of difficulties ahead, a reflection on this not being on our plan for life...we went for a walk/stumble across fields close to us and enjoyed the rest of the afternoon. In a way that's been the way we've tackled things ever since. Whilst we didn't plan this we, like Glenn said in another post, are making the very best of things that we can. I have been able to give up work to be Jackie's 'full time carer' and we love being together all the time.
Is Mark taking medication for the night time REM - Jackie used to suffer very badly before she was prescribed Clonazepam - I used to say that she would beat me up all night and then say she couldn't remember a thing in the morning - a very convenient excuse for giving me a black eye I think!! The Clonazepam has been superb - much better night's sleep now and I only get the occasional thrashing overnight!
I hope you make some wonderful memories together in the weeks ahead.
Hi I'm Pauline I was diagnosed with MSA a few weeks ago I live on my own and finding it very hard Iam really struggling to walk I have fallen 3times this week once down stone steps outside, then in my kitchen and put my hand on my oven and burnt three fingers as I went down. I have physiotherapy at home she said it's time to go onto a wheelchair, I said but who's going to push it .! I can hardly talk I dread to think what comes next.finished moaning now how does everyone cope and do normal things any tips.
Pauline, unfortunately you will need help and aids. Talk to a Neuro or Parkinson's nurse about your situation now and the future, ask for help from them and also social services. There many pieces of equipment to help you cope and protect yourself.
Go for an electric wheelchair. Use a walking frame. Get an alarm button. Do not be afraid of taling to your friends and neighbours you will be surprised who offers to help and those that actually do.
I don't no where to start do I have to buy my own electric wheelchair, I live in a council flat I have 6 steps to get down to the pavement, I have asked if they would alter this for me it is possible that was a month ago but no response. Thanks for advise
There should be an independent living team at your local council, but your GP should be able to refer you to all the people that you need, physio, OT, Social Worker etc. You do need lots of help to get set up and the sooner the better. have you got a friend or family member who can help fight with you??
I have a physiotherapist comes every two weeks and plays with my two chihuahuas someone else brought a perching stool someone brought something for my bed which I didn't want. I am waiting for a new physio now who deals with brain problems, I was told !!that's it I can't get out of the house to sort anything. No one understand me enough on the phone, I do have a good neighbor and friend who helps me just hope I get sorted soon thanks for advise it helps to no some ones there.
goodness Pauline it does sound tough for you. Will your neighbour make phone calls for you? You would need to go on the phone to give permission for your friend to speak for you but most people will accept that. You ned to get some leaflets from the MSATrust to give to everyone who visits you as many professionals will not have come across an MSA patient. Then get them to ask the trust for a professionals pack so that they have the up to date info and they can speak with the Trust nurses too if they have any worries. It is tough having this disease and you need lots of help - why don't you send an email to the trust nurses yourself saying all the problems you are having? Bless you, hope you get some help very soon.
Thank you for all your replies and lovely words.. yes truly is an awful condition and which i too bare the bruises from.. with the Rem sleep.. its scary how quickly this condition absorbs the person you love and very very hard to watch.
Guess we are all on a journey now.. un chartered!..
Its a real comfort to know.. We are not on our own.. If any body needs a rant or scream.. Im here.. because im scared to.. we all are and its ok to be afraid.. and its ok to keep smiling too and living the best we can..
If anybody wants to talk in private my email address is angiegraves51@yahoo.co.uk
What good advice about asking for help, Pauline. People are very willing to help if they know exactly what is needed and if they are not asked too much.Look at yiour life and see where help would be useful. If you fell down stone steps outside you mabe helped by a handrail. Perhaps you were putting out the rubbish? That is a good thing to ask a neighbour to do for you while they are doing their own
Some people regard handails as a sign of failure. They are an aid to keeping your independence, Both sides of the stairs, doorways, anywhere you need to stand . The rail which Victor had next to where he had always stood to make the tea meant he could do it for over a year longer and now it is a very useful towel rail which reminds me of the hundreds of delicious cuppas he made over the fifty years we were together.
Is there a falls clinic near you? Awareness is important. Most falls seem to happen when you are not thinking. Your automatic pilot fails with MSA. If you are trying to lose weight they recommend being mindful of what you are putting into the mouth - not just popping thngs into your mouth without really noticing. Same thing here. Concentrate of what exactly you are doing. It slows you down but not half as much as a broken wrist
You are having a difficult time but plenty of people know how you feel and are supporting you in their thoughts. Keep up your spirits
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