Hello - new here

[Brownbutterfly]

Hello everyone

My husband was diagnosed with MSA 9 months ago at the age of 47. We had noticed slowness in his movements and slurring in his speech, and had a number of doctor visits before he was diagnosed.

He went through a period of not wanting to know anything about the disease, and refusing to talk about it. Then he went through a few months of depression. Now he is convinced that there must be treatment options out there that doctors may not have heard of in this country (we are in New Zealand), and wants to travel to other parts of the world (particularly in Asia) to seek alternative treatments available.

I don't know what to do at this stage. I don't want him to give up hope, but at the same time, I don't want to waste what little money we have on 'treatments' that won't lead to results. Everything I have read and have been told by doctors is that there isn't a treatment for the disease, and that the medications can only ease some of his symptoms.

Kamana

[FredaE]

The MSA community is international. MSATrust in London has members all over the worldand so does the USA Support group. Join the MSAT in London and you will be kept in touch with any new developments without needing to travel Research is international. and there is information everywhere on line. You can asssure your husband that there are no hidden treatments anywhere in the world. Nor are there any magic bullets like deep brain stimulation. although there are plenty of people very happy to con you out of your money for useless treatments. All your poor husband will find in other parts of the world are more medical people who have not heard of MSA and a few who have. - just like at home.

[Brownbutterfly in reply to FredaE]

I agree with you completely and appreciate your response. I am just finding it hard to make my husband see it that way.

[Yanno in reply to FredaE]

Hello Kamana,

Freda has as always has said some wise words. When Jackie was diagnosed we decided not to follow any rainbows which inevitably end in disappointment. There may be a magic cure out there...but I doubt it. Instead, we decided to live life to the full, cherish every moment, remember every kiss, enjoy each and every experience ; think about what you can do, not what you can't.

As for going to Asia, yes I would go.... Not to look for that miracle but to enjoy the sounds, sights and smells of a different culture. In the future, don't look back and say...if only we had....live every day, enjoy every day, put the bad days behind you and remember the good days,

Take care, Ian

[Brownbutterfly in reply to Yanno]

Thanks Ian. Appreciate that advice. We have two teenaged children, and that is the advice I have been giving them too - to appreciate the time we have together; to get their dad to share stories and teach them things while he still can.

[FredaE in reply to Brownbutterfly]

Yanno talking sense as usual - well of course he does when he agrees with me. I always think that the early stages after diagnosis is one of the hardest times while you are still struggling to get information and basically eliminate false hope. There are so many plans to be given up but there is also a surprising amount of joy to be had. This disease is a total disaster but good can come out of it.

I don't like the idea of doing battle with MSA because you will inevitably fail but I do like the idea of giving the beast a good run for its money - that is one you can win. There were several of us at the time who felt like this. We visualised "the beast" as trying to ruin our lives and take the happiness out of them. Every pleasure like the ones Yanno ia talking about was one in the eye for the beast.

What is possible for one patient may not be possible for for another with different symptoms. When Leo and his wife bought a huge camper van with a hoist and all the things he needed at home they went off all round Europe wildcamping. They could never have done that while they were working but enjoyed it hugely - definitely good coming from evil and one in the eye for the great spoilsport.

Learning how to take control of his treatment while so many of his medical advisers were ignorant, and to do it without causing offence has stood me in goood stead since. Victor had to pay a terrible price for it but the alternative was for us to collapse under the burden so there was no choice and I have tried to use that experience to help other people.

It takes time to come to terms. I don't think there is anything to do to change your husband's mind but you can feel certain that staying put is, from a medical point of view, the right thing to do. There IS no holy grail and if you become part of the international community on line you can be certain that you will know of anything new. As I have said before there are, in Asia especially, a host of miracle cures which at best will take huge sums of money better spent on making life more comfortable and at worst make things worse.

Good luck - you are doing so well and may the sun still shine and the birds still sing for you both

FredaE

[LaCrosse87 in reply to FredaE]

Hi Freda,

We have also looked everywhere to see if there is anything that can stop this disease. We met with several Neurologist and one said that there will be charlatans out there who will claim that can cure it, but there is no cure at this time. On a similar note, our family means well, but they want us to chase things that are not based on accepted scientific fact and spend money that we will need for his care. They are even throwing out crazy health-test ideas that have no basis in neuro degenerative diseases. That basically gives us yet another thing to manage (them), when we need to focus on him. We still have kids in school so it is very hard. We have decided to try and live our lives as normal as possible. Sending hugs your way.

[FredaE in reply to LaCrosse87]

Your are so right. Thefamily is trying to cheer itself up a bit but actually making things worse and even worse if they succeed in emotionally blackmailing you into thinking you are not doing your best by not chasing rainbows and bullying you into wasting money that could and should be spent on making life better NOW. They mean well but there is no cure at present. Be assured that when there is all the people on these forums and support groups will hear about it. the press is a pblem it does not differentiate between an interesting line of enquiry and a surefire cure. and is also gets its initial mixed up. MSA is totally different from MS for instance - one is the brain going wrong and the other the insulation on nerves as they runthrough the body. The cure for one will do nothing for he other. Like saying that the lion and the lion-fish eat the same food.

[chester2107]

Sorry to read this and welcome , as far as I know there isn't any treatments for this horrible disease, really hoping there will be eventually , my dad has it and has given up really , my mum cares for him and has carers to help

He is 83

Everyone is different and there doesn't seem to be any pattern to how quickly it takes hold , so I would spend time going out and doing things together while he is still mobile xxx

Elaine

[Brownbutterfly in reply to chester2107]

Thanks Elaine. Yes that is my plan.

[Paul_and_Sue_Wood]

Brownbutterfly

It's always sad to hear another story of MSA and we all wish it didn't exist..

It robs us all of a future we hoped for and the hardest part for both sufferers and loved ones is acceptance..

Accepting it exists, accepting not enough is known about the condition, accepting nothing can be to cure or halt the condition and accepting that your future can not be planned out.

All we can all do is just try to adapt and move on... Their is a wealth of help out there if you just ask and say "HELP" for sufferers and carers... Learn all you can, plan for every eventuality and accept that that eventuality may happen.... Once you do that you can now get on and adapt and enjoy what you can do and that will be a lot more than you think.

Sue and I are into out 11 year on this journey and still travelling on the road of life...

The condition puts roadblocks in the way but we just take another route and carry on...

Good luck to you all.

[Brownbutterfly in reply to Paul_and_Sue_Wood]

Thanks Paul and Sue. I am trying to read up as much as possible so that I am better informed. My husband is not keen to attend support groups because he feels it may be too confronting to meet others who have progressed further. I am thankful for every day we have together and can see that it is bringing us closer together too. Trying to see the positive in this beast of a disease.

[LaCrosse87]

Sorry to hear about your husband. I am fairly new to the site as well. Everyone here has been very welcoming. We have young children and I worry about the future, so I understand not wanting to waste money on the rainbows like others have mentioned. There is no cure at this time.

We have also noticed my husband's movements significantly slowing and his speech slurring more and more every day. I suspect we will need to get him a walker in the coming months.

All my best and hugs to you.

[Brownbutterfly in reply to LaCrosse87]

Things seem to change quite unpredictably I find. Somedays he doesnt feel like he has the energy to get up, and some days he is able to do a 10km walk with me. I am just going to take each day as it comes and try and make the most of the good ones.

Sending hugs your way.

[LaCrosse87 in reply to Brownbutterfly]

A 10km walk is great. I can relate to the days where your husband is not doing as well.

We are also beginning to notice changes in my husband. His short-term memory (auditory more so) can be affected from time to time, but his long-term memory is solid. Walking around our house is no issue for him as he can grab walls and chairs when needed. Walking across a busy street really needs to be done with two people by his side. I also feel the slurring of his words seems to have increased over the last 12-18 months.

The future worries me as I have children and work a full time job to support us. I try to live in the moment because it stresses me out when I think about how I will manage the kids, my job, and his illness. I have insurance but do not have the great healthcare that others speak of in the UK.