Head injury

Hi, my wife had a car accident at aged 57 and was in resonable health except for what the GPs were calling menopausal symptoms. She was injured on the top of her head and paralysised down one side plus her bladder and bowl packed up working and so she was catheterised. During recovery parkinsons set in and then looking at her medical history the neurologist's decided that she had MSA which had been advanced by her head injury. 3 years on now and she suffers regular blood pressure drops and can no longer stand or feed herself, but her spirit's are high and we have learned to control the blood pressure by adopting a morning routine that keeps them at bay.

[Yanno]

Hello Kev, welcome to this community which is still fairly new but has many members who are very willing to help and share the ups and downs of the journey we are on. I am so pleased your wife's spirits are high, we find that by accepting that we are where we are and that by making the very best of our time together every day, things are bearable. I have said so often that this isn't the retirement that we both planned, but we are together and enjoy being so, all day and every day.

Welcome again, take care, Ian

[Beverley52]

Hello Kevin. I'm sorry for your awful diagnosis. MSA is, to say the least, very challenging. But you're on the right road, with a positive attitude. I wish you both well. The support on here has already proved invaluable to me. I hope you find the same.

Regards, Beverley

[Alisonleicssupport]

My mum experienced a few MSA symptoms long before we knew of a problem. She was always very active and walked a lot. Hers manifested when she hurt her ankle and couldn't walk for a while.

You will find plenty of support on here.

Alison

[Hidden]

We were told that generally speaking MSA can start life with low blood pressure, breathing and bladder problems earlier in life and then the parkinsons type symptoms set in at an average age of 57. My wife had low blood preasure at 20, asthma by 30 and bladder retention at 35. She then had an hysterectomy following which she then had night terrors set in by 40. A year ago when the parkinsons symptoms where early onset, she had a DAT scan done which revealed that she had "symmetrical parkinsons" also known as the "parkinsons plus" group of conditions. This then narrowed it down to either MSA or PSP. Taking her medical history into consideration the neurologist's seid that they diagnosed it as possible MSA advanced as a result of injuring her head in the exact area of her brain effected by the previous early onset MSA symptoms .

[Beverley52]

Good morning Kev. My husband was diagnosed at 50, after a fall at work. We then put 2 and 2 together and realised he'd been showing symptoms for the past year or so, but so minor we hadn't thought anything of them. It's a tough road. Unfortunately Billy died at Christmas, just short of his 61st birthday. But he bore his illness with great strength and positivity. I have nothing but admiration for the man he was.

I only found this site after he was gone. People are wonderful. Very supportive. It's amazing how you can gain strength from people you don't know, but know exactly where you are coming from. And of course may be able to help with some, even minor issues.

Do go to the support meetings, if there is one near you. The dedicated nurses are great. I live in Ireland and the trust sends Katie Rigg here 3 times a year. We only managed to get to a couple of meetings, as distance was sometimes an issue.. I wish you both well on your journey. And if I can help in anyway. I'm happy to do so. It helps me too.

Regards Beverley

[Hidden in reply to Beverley52]

Thank you for your reply Beverley. I put as much information as i could to see if other's had a simlat time line as my wife has, and yes billy's does seem simlar indeed. We live in wales and the nearest MSA trust nurse is 3 hours drive away although she does have suport group meetings in Cardiff every 3 months which is 2 hours drive away. There is i neurologist listed for the whole of wales to get a good diagnosis and saw him privately. On the whole we have found the NHS very reluctant to give a diagnosis until Carol had suffered with MSA for a time period of no less than 4 years. I do however think that we now have a good team around us, 3 years on. We atend our local Parkinson's suport group which is once a week and is only 2 miles away. I personally think that there are a couple of persons there whom have been told that they have "parkinsons " were in fact they may have MSA. I find that i now know far more about the condition than 90% of the NHS staff than have been apointed to help Carol, and i some cases that were doing her harm so i had to ask them to leave her alone in future. Yes i think the NHS could learn a lot by listening to the carers.

Kevin

[Hidden in reply to Hidden]

Hello Kevin

I have been a carer for a very dear friend for the last 4 years. Sadly, she died recently, but I’m pleased to say she died peacefully at home and no obvious suffering. She was diagnosed 6 years ago, though had symptoms going back even longer.

I was interested to know that you live in Pembrokeshire and so do I. I’m actually in Cilgerran, North Pembs. I had considered attending a Parkinson’s group but never got round to it. I understand what it’s like to feel somewhat isolated because there is no one else around, professional or otherwise, who fully understands the condition. I always had to say the condition in full and not just MSA because more often than not people would automatically think I was referring to MS instead.

It can also be very frustrating trying to find gadgets etc that will help with everyday needs.

Now that I shall have more time on my hands I would love to put together a list of things/gadgets and where they can be sourced so that other sufferers can more readily access this information.

Lesley

[Hidden in reply to Hidden]

Hi Lesley, yes i agree it can be very frustrating living here and getting access to any help or advice that we need. Carol was first diagnosed with "Parkinsonism" Then this was narrowed down to "one of the parkinson plus" conditions. And then finally when I suggested that it seemed more like MSA to me, they finally agreed that it was looking more like MSA as her condition progressed. Using the right gadets does make life easier. I.E size and weight of cutlery. Wieght of cups. Length and size of staws to drink with. All these are things that can make the difference between it working or not working for a person with MSA.

Kevin

[Marie_14 in reply to Beverley52]

Beverley my husband died in February having been told in December 2016 and January 2017 that it was likely he had MSA. Before that he had been told it was likely to be PSP with signs if MSA! Still don't know for sure which it was or if it was both. He went downhill very fast however. Having said that there were things we ignored as they didn't seem serious! So his symptoms go back a few years when they are taken into account. Although they didn't impact on his life.

I really wish they could get to the bottom of these neurological conditions. They cause such heartbreak for so many. People don't know what you are talking about either! Someone actually thought my husband had died from MRSA! Can see why, as people have heard of that?

So we all need to make sure that MSA is recognised and when our loved ones die to make sure it goes on the death cert. Currently you have to ask for that to happen as they will just put pneumonia down for example.

As someone else said Doctors and Nurses don't know what you are talking about! I don,'t mind that they don't know everything but I do wish they would read up on it if someone says they have it!

Where in Ireland do you live Beverley? I originally come from there as did my husband.

Take care all.

Marie x

[FredaE]

You are absolutely right Kevin. You DO know more about MSA that most of the people caring for Carol. It a rare disease and that is not their fault. What is their fault is if they refuse to listen and understand that MSA is a very odd disease indeed. Infections may or may not produce a temperature but they can cause a sudden unexplained wosening of symptoms. If this happens carers need the confidence to insist on blood tests before accepting the received wisdom "no temperature = no infection so stop the anti biotics at once"

i

MSA is a tough and demanding journey People on this forum know a lot about it one way an another. Good luck we understand

Freda

[Hidden in reply to FredaE]

Thank you freda, quite corect. We have a good cronic condition nurse whom gives us a "survival kit" including "start as necessary" antibiotics. And suppossitories, laxatives, nebulisers etc etc. But GP's , physio's and lung nurses are all getting it wrong and when i talk symptoms with them they then know that they are out of their depth and we never see them agian. I know it is not their fault as we expect them all to be "all seeing and all knowing" as though they were all professors. But with a lot of help from the right people we (the carers) can become pretty good at "specialist carers" for our MSA caree's.