Hi

Recently been given 80% diagnosis of MSA things seem to be catching up with me

[Marie_14]

Airman755 what do you mean about things catching up with you? Have you got help at home?

Marie

[Hidden in reply to Marie_14]

Hi Marie_14 yes but it all comes as a bit of a shock are you a carer?

[Marie_14 in reply to Hidden]

Airman yes I was a carer for my husband. He has passed away but I feel very passionate that people need to know about MSA and PSP. The other thing they thought it might be. They finally decided it was MSA. To be honest I still don't know for sure.

Looking back he had signs of something wrong for a few years. He was forever breaking things but I just thought he was clumsy. He was always tired too but he had always been like that even when young. So we both dismissed a lot of things initially. It was only when his walking was affected that we realised things were not right.

My husband also had a rare Leukaemia and thanks to a second opinion and very expensive drugs he was in remission from that.

Unfortunately the MSA or PSP got him. It is not an easy thing to deal with and your life changes totally. If you have a partner so does theirs.

Hope you have carers coming in to help you because you will need them. If you haven't got any then your Neurologist or GP should organise them and also an OT for you. There is a lot of help if you know where to get it.

If I can be of any help let me know. Good luck to you and yours. There are a lot of us out here so don't feel alone. I have heard it all and seen it all. It does get to carers and when things go downhill whoever is your main carer will need respite.

Have you had any falls? My husband had a lot so I had to get an alarm for him. Just so I knew if I was not in the room. Think about that and think of a stairlift if you have stairs plus grab rails.

Are you in the UK? I am, so know more about what help you can get here. You may already have help? Not sure how far along you are with this condition but you sound very worried.

Take care of yourself.

Marie

[Hidden in reply to Marie_14]

Marie thank you for the kind words I live in East Grinstead sounds as though you and your husband went through the mill hope that we can keep in touch all the best Derek

[Marie_14 in reply to Hidden]

Of course we can Derek. People are very kind in my experience and want to help if they can.

By the way the name Airman is interesting. Were you one by any chance?

I live in Cheshire so a bit further north than you are.

Marie

[Hidden in reply to Marie_14]

Hi Marie yes I was an irk in the RAF seems a very long time ago now. Happy Easter

[Marie_14 in reply to Hidden]

Airman

Not sure what an irk is but my husband was in the RAF too! We had Nimrod played at the end of the small service at the Crematorium. I tried to make all the hymns and music link to his life in some way. Have to say he didn't enjoy his time in the RAF but it was part of his life? He served in Aden in the 60's and was blown up by a hand grenade. Made a mess of his legs but they healed. Akthough he lost the use of them anyway? None of us get to go the way we want to?

Like you it was a long time ago now and we were based in the UK all the time we were together. I never went to Aden thank goodness.

Happy Easter to you and your family and hope you get some chocolate!

Take care.

Marie x

[Hidden in reply to Marie_14]

Sounds as though he had a tough tour I was 70s have a Happy Easter

[Veteran250 in reply to Hidden]

Hi airman755 With all of these problems have you contacted your local SSAFA rep and asked the RAF benevolent fund for help, if you want any help to contact them, let me know, more than willing to help anyone but especially a fellow RAF Veteran.

Don.

[Hidden in reply to Veteran250]

Thanks Don saving that for when things get really bad. Had an interesting trip a couple of weeks ago my daughters spoke to RAF Cosford my training school and organised a tour wonderful how the RAF family gather round

[Veteran250 in reply to Hidden]

Wonderful daughters Derek, I tried contacting the public relations officer at Brize where I spent six years in Supply Sqdn but received no reply, maybe I should try contacting OC Supply Sqdn although I think they call it logistics now, hoping you are keeping well Derek.

Regards Don .

[Paul_and_Sue_Wood in reply to Marie_14]

Derek

I care for my wife who has been given a possible diagnosis of MSA.

The condition affects each person differently and at a different timescale.

It's a condition that is life changing for the patient and thier partner both physically and emotionally.

Seek help for the both of you from everyone professional or friends.

Use your GP and consultant to get in touch with a Neuro or Parkinson's nurse, occupational therapist, social services and local day hospice services.

The support is out there if you ask, but if you don't ask you don't get!

Read up on the condition as much as you can to understand the risks, but remember symptoms vary for each patient.

If you have a partner get them to ask questions separately of friens, professionals or on this forum as they have different questions to you.

This forum can provide a range of support from a wide range of users.

Be patient, be resilient and above all enjoy everything you have today as tomorrow may be different.

Paul🤓

[Hidden in reply to Paul_and_Sue_Wood]

Thanks Paul

[Teresa5 in reply to Paul_and_Sue_Wood]

I do enjoy today well try

[Yanno]

Hello Derek - I think it is very worrying when you first get the diagnosis - luckily Jax's neurologist very early on suggested that we got in touch with the MSA Trust. They will send you a folder with a great deal of information in it. Also they have specialist nurses who are available by phone to advise - Jill, our nurse, has been superb in her advice on medicines and some of the symptoms. Just as a for instance, Jackie was suffering from night terrors - well to be accurate she wasn't suffering as she didn't remember a thing...but I had the bruises to remember! - Jill advised what others in that situation had been prescribed and Jax was quickly placed on that medication.

There are a number of sufferers and carers on this site who are only too willing to help and so please just ask, it's so good to be able to give back some of the support we received when Jackie was first diagnosed, sadly before this community was available.

The link for the MSA Trust is: msatrust.org.uk

Take care, and don't forget to ask here for advice if you need it.

Ian

[Hidden in reply to Yanno]

Thanks Yanno got my folder seems a friendly place to be

[Beverley52]

I was going to suggest a few things but Yano got there before me. MSA is very scary. Don't be afraid to ask the question. Although we are all affected differently, some one will have an answer for you. And Yano, your "bruises" reminded me of a couple of incidents. Early on in our journey, Billy would get what I thought were just very vivid dreams, and I once got hammered into the ground, as he had a hand on my head, and obviously, a hammer in his other hand. He never remembered a thing. Thank god he was only dreaming. Many good memories. Make them while your able.

Regards Beverley

[Hidden in reply to Beverley52]

Thanks Beverly this is a friendly site

[Spanishholidays]

Can,t believe how caring and informative this trust is to everyone,got my first magazine today I had no idea Me a effect s so many areas like breathing,bowels swallowing things my go has prescribed laxatives,pelvic floor exercises,and now chest xraypllus bloods to rule out lung problems is cancer

[Hidden in reply to Spanishholidays]

Hope that you find it all useful I know that I have