MSA a newbie at this and dealing with travel

[Suz64]

Hi Everyone

I was diagnosed with MSA about 3 weeks ago, trying to come to terms with what it all means. I’m determined to stay positive, my big problem at the is balance and low blood pressure they are struggling to give me any meds at the moment because of that. I intend to do lots of traveling and go on lots of adventures has anyone had any problems with getting travel insurance, how do you find travel in general?.

[Yanno]

Hello Suz,So sorry that you need to be here but nevertheless welcome. When Jackie was diagnosed in 2015 we were determined to travel as much as we could. Within weeks of diagnosis we went to Myanmar (Burma) before the current issues. Subsequently we travelled extensively through Europe, also went to Russia and Iceland.

Jackie's biggest issue was balance and we invested in a rugged all terrain wheelchair which we have to this day. Don't be put off by anyone, if you want to go somewhere you can make it happen.

If you look through past posts here you will find a number about travel including insurance. We found an excellent insurance company who knew all about MSA and we bought insurance for relatively little extra. One tip I would give is really make sure your insurer knows what condition you have and doesn't confuse it with something else. The chances are you won't have to make a claim but if you, do you don't want them to get out of paying because of a misunderstanding.

If you haven't already, do look on by the MSA Trust website - there's a whole load of information there about enjoying travelling with MSA.

Good luck, have fub, take care, Ian

[MSA1 in reply to Yanno]

I have MSA C and I am with Barclays for travel insurance and my wife has RAC breakdown cover included. If I wanted just travel insurance can you recommend anyone?

[Yanno in reply to MSA1]

There was a good recommendation in this post a few months ago: healthunlocked.com/msa-trus...

I hope this helps, Take care, Ian

[Gill-C]

Hi Suz!

Lovely to see your post as I was diagnosed on 10 June 2022 at the NNH in London. We are a select band!

Balance and low bp are also big issues for me, though a change of meds and being hyper-vigilant with stress, tiredness and hydration have helped the bp. The MHA Trust have a good leaflet on managing it.

I’ve not long come back from Greece. I used AllClear insurance-a bit pricey, but asked sensible questions and were knowledgeable. The journey and holiday were less tiring than I thought. Book airport assistance - even if you don’t strictly need a wheelchair in the airport (I don’t), using it saves your energy for other things and avoids wobbly standing in a queue.

The positive attitude is a real asset. I reckon that and (in my case at least) sheer obstinacy gets you a long way!

Do keep in touch if you would like to. Not sure if one can private message on this Forum.

Good luck!

Gill

[FredaE in reply to Gill-C]

one general point in Yannos post - the name of this disease is muliple system atrophy and convenient as it may be to use the initials there are so many dideases with M intheir initials that people mix them up and end up thinking you have the wrong one. MS is much commoner and that what most people opt for. Use the fu;ll name always outside the family

[Suz64 in reply to Gill-C]

Thanks Gill for your message how are you doing in this heat, I use to love it, now it takes all the effort to keep cool, I hope to go back to nz to see family but really not looking forward to 28 hrs + traveling, maybe I will start with a shorter trip to see how I go, would like to keep in touchTake care

Sue

[brianski]

Hi sueI am a 65 year old man and was diagnosed 3 years ago. My big issues are balance urinary control and fatigue.

It's great to hear you want to travel. In the past year I have been to Canada France Poland and Australia. I have used assistance in all airports and it works. I walk quite slowly with walking poles so assistance in the airports assures that I get to the departure gate on time and that I am identified as someone who needs to board ahead of others. I sit nearest the aisle and wear a pad just to be sure. I carry a day pack on my back keeping my arms free.

Bon voyage

Brian

[Worbs2]

Hello and sorry to hear. I've too been recently been diagnosed with MSA-C. Stay strong, positive, mobile and motivated. Let yourself feel the sorrow and let it out. It helps.

This forum will help you navigate through this mess of a disease. Make sure to ask questions especially those you are stupid. Be aggressive with doctors etc. Everyone is different with MSA.

Bless you and welcome to forum

[Carli_1]

Hi, what does the C stand for ? Thanks Carli

[CanAmK in reply to Carli_1]

It means that is the cerebellar type involvement for Multiple System Atrophy