Just introducing myself

[Tusker1953]

My name is Jan and I am the carer for my husband Alan who has MSA - C. Alan was first diagnosed with atypical Parkinsons and then probable MSA. After reading the MSA Trust Site I knew it was without a doubt MSA. Since finding this forum it has been in a strange way a great comfort to me to know that a lot of the symptoms Alan has suffered from and is suffering from are common. Nose running when eating (sounds quite unimportant but it is sometimes to the degree that he just gives up eating his meal) leg cramps and so on. I can't remember the actual date that he was diagnosed but he fell off a ladder 3 or 4 years ago and has gone downhill swiftly since then. We are waiting for a wheelchair that has been on order for some weeks because walking is now just a stagger grabbing hold of his frame and we know that our house (housing association) is totally unsuitable but so far adaptations or re housing has drawn a blank.

[Yanno]

Hello Jan. Welcome, albeit it's always sad that you need to be here. Hopefully you will find that there are many people on this site who will share your troubles and most of all understand them.

You've started off at the right place looking at the MSA Trust web site. It's also worth getting in touch with your local MSA Trust specialist nurse - there are three covering the country and are a real source of support and specialist knowledge. They may well recommend a local support group where you will also find some positive help and support.

One thing I know our friends Paul and Sue on this site always shout about is just that...you have to shout for what you need and to get the support from people like the wheelchair service and local housing association. Don't take no for an answer.

One other thought that might help you is the Trust has an advocacy officer, Jane Stein ([e-mail]), who is there for just the reason you need - to help you fight for your rights.

Good luck, take care, Ian

[Tusker1953 in reply to Yanno]

Hi Ian Thanks for the welcome and advice. We plan to go to a meeting in Worthing tomorrow so long as Alan is up for it so I shall make enquiries there, anc thanks for the advocacy officer address. Best wishes. Jan

[FredaE in reply to Tusker1953]

It is fine for you to go to support group meetings on your own and make contact if Alan does not feel ableto go. I found it very helpful at a time when my husband did not want to see what was coming and later when he was not well enough

[kas1023]

My husband is also named Alan and also has MSA-C. I think he's further along than your husband since he's been in a wheelchair for almost two years. Welcome to the group.

[Tusker1953 in reply to kas1023]

Hi kas1023 and thank you for the welcome.

[heysunshine]

Hi Jan,

I know how you feel! Glad you found valuable information on such a crappy disease that is hard to readily diagnose.

So "un-welcome"! So sad you also join this club!☹

The good thing is the people on this forum are amazing and give great support and info! I felt so alone... until I tapped into The Trust.

The bad thing is that I am in Canada and we have alot less medical/government support.

So count your blessings and make each day a good one whatever that may look like.

[Tusker1953 in reply to heysunshine]

Hi heysunshine, thanks for the welcome. It is great to know there are people out there that understand what MSA is like. I hope for you that Canada catches up with the support. How lovely that this forum covers worldwide! Best wishes Jan

[Hellebelle]

Welcome to this really supportive site as Yanno said, albeit we are here for a sad reason.

I agree that you really have to shout loudly for most things you need I am afraid. The services all have so many competing demands and they seem to respond more quickly to those who make a fuss. Yanno's suggestion to contact the MSA advocate is a really good one. Because the condition effects balance, your husband is massively at risk of falling so that needs to be stressed. It will be far less expensive to provide him with a wheelchair than a stay in hospital with broken bones.

My dad has MSA C and we have been very lucky to have been referred to a palliative care team at their local hospice. They have given us so much good advice and have advocated for us with other services. I hope that you will be fortunate in being able to find good support around you too.

Sending lots of love to you and your husband.

[Tusker1953]

Hi Hellebelle and thanks for the welcome. My daughter in law has been telling me I must contact a hospice but I think I have been a bit of an ostrich burying my head in the sand thinking 'later - not yet'. Recently Alan's speech has got a lot worse and he sleeps a lot and seems 'distant' (that is the only word I can think of to describe him) so I know I have got to get on with sorting things out for us. Love to you and your dad.

[Hellebelle]

I think a lot of people associate hospices with dying and it's understandable that it makes people apprehensive. Our experience is that they celebrate life and are interested in supporting dad at home in giving him the best quality of life. It is a personal thing and if took us a long time to contact them. They have provided much needed advice and reassurance for us when we have struggled with coping and managing some of dads symptoms. They have been involved for the last three years as the term "palliative" is flexible with life limiting conditions. It's very much an unknown quantity.

Dad has all of the symptoms you mentioned and I think it can be distressing, traumatic and tough for the family around. We decided we would accept all the help we could get. I wish you well.

[Yanno in reply to Hellebelle]

I couldn't agree more! Our local hospice, St Richards in Worcester has a series of classes called “Living Well” which give experiences and support to do just that...live well. Jackie has really enjoyed these sessions and it gives me a chance to have a cup of coffee and read the paper for a couple of hours. Take care, Ian

[Paul_and_Sue_Wood]

Hi

Sorry to see you're here, but glad you found the site.

As Ian had said one piece I can offer after helping my Sue for 10 years is ask for help from everyone.

Get social services and the neurology nursing team involved.

As the condition deteriorates keep getting professionals involved as they can help as you hit certain criteria.

Good luck, keep strong and just adapt.

Paul &Sue

[Rafaina]

Hi Jan, sorry to see you here but there’s loads of info and support here. My partner was diagnosed early 2018. He has visited the hospice most weeks since then for palliative care - acupuncture and massage. It helps a lot. Also agree you have to ask for help which I get is difficult for lots of people but you have to. My partner is also an advocate so knows the way round the system but it’s still hard to navigate. But ask your GP about OT, speech therapy, physio, contacts at your local hospice, carers groups for you and the wonderful MSATrust. Your GP is the gatekeeper to many services. Make sure you are registered as a carer with your GP practice too.

Ensure you take time for you and speak to others in the same position - here and FB forums for example.

We are all here and wish we weren’t but there is a lot of expertise and understanding we can all share.

Keep on keeping on

Clare x

[Tusker1953 in reply to Rafaina]

Thank you so much for all your advise. Best wishes, Jan

[chester2107]

welcome - my dad has msa also for about 4 years - he is in a wheelchair too

he is 83 so luckily got it later in life , still very hard for him

the support meetings are great as are the trust nurses

elaine x

[Tommytoothpaste]

Hi, my husband also has this condition and this forum will help you with support and much needed advice. The group meetings also give you sound advice and a chance to meet other carers.

Welcome to the group, take care

Xxxx

[phamwales]

Hi Jan

Let me join in with the welcome.

i think are essential is to build a relationship with the local OT department. They have been brilliant at helping get the right equipment in place before you start to struggle.

The other thing to think about is the MSA face to face meetings. I've only been to one but i wish id done it earlier. It was really helpful and helps answer some of the questions about how this journey might evolve, It seems its very different for everyone but there are patterns and it helps to know what to expect.

good luck and stay connected.

Pete

[Tusker1953 in reply to phamwales]

Thanks for the welcome and advice. I am off to the Worthing meeting this afternoon so will be ready with my questions. Best wishes Jan

[Tusker1953]

Thanks

[Tusker1953]

Thanks I will do. Best wishes Jan

[Suze81]

Hi, welcome to the site!

My passed away in March from this horrific disease and I’ve found it difficult to talk about it. But I’m back!

In terms of help - like everyone is saying - ask! My Dad was referred to Occupational Therapist and they were amazing, he had all the adaptations he needed, even a stairlift in this house until my Mam was unable to get upstairs then he had his house rebuilt at the back to make downstairs living. All started with OT. So I suggest making contact there. The district nurses were fab for us and after a fall and broken leg for my Mam (just to add to it all), she spent time in hospital then when she came out they offered my dad carers , he was unsure at first as he felt like they were suggesting he wasn’t good enough, but it eases the strain, especially towards the end. They only came in to get her up and dressed and later in the day to put her to bed. It was good company for my dad too as my mam was unable to communicate.

Get in touch with the local hospice, my Mam went 1 day a week and this was amazing support - for both Mam & Dad! They made friends there too and my Dad still visits.

What is the also massively important as well as getting help and support for your husband - is getting it for you too. I watched my Dad care for my Mam and he was a mess both physically & emotionally. Sadly, with no way of stopping this disease we know the inevitable outcome for our loved one with it, but we have to carry on once they are gone and the support is vital in order to do this.

Sorry it’s a long one... hope some of it is helpful!

[Tusker1953 in reply to Suze81]

Hi Suze81

Thanks for the welcome and I am sorry to hear about your Mam.

I have found this site so informative and helpful and also great to know that I'm not alone.

I went to a meeting yesterday and had a chance to chat with other carers and sufferers who had great ideas and similar fears.

Thanks for your advice and I will be pushing for more help through the OTs and asking our GP about hospices.

Thanks again and best wishes

[FredaE]

Talking of house alterations - remember that things like that, showers and door widening, adapted cars can be zero rated if they are for the sole use of the patent but you have to arrange it before the work is done. Does not mean no-one else can use the shower but that the patient needed it. Also that if you have to use one room in your house for equipment like hoists and wheelchairs you can get your council tax down banded. No -one will offer but it is there if you ask

[Tusker1953 in reply to FredaE]

Thanks for the really useful info. Best Wishes. Jan