Scared about the future

[Redjune1]

Today I took part in a zoom meeting with the MSA trust. Other people taking part were at various stages of the disease and it really opened my eyes as to how helpless my husband is going to become. I don’t know how we will cope, we live in a house with one bathroom upstairs, but he won’t be able to get upstairs eventually. I just feel so scared and stressed about what is going to happen.

[Primitivepotter]

Sadly I missed that meeting which would have been my first too. You have encouraged me to make a real effort to get onto the next one. I find the OT’s here have been really helpful in helping us to make plans. We are going to bring my husband downstairs as we cannot fit a stairlift or a lift in our house.

[Redjune1 in reply to Primitivepotter]

Yes it was really useful and I found out about things I didn’t know, but at the same time I felt like crying and felt totally overwhelmed by what’s to come

[Tusker1953]

Hi, I read your post and remember feeling just the way you are feeling now. All sorts of help will come along, perhaps Occupational Therapists are already involved and they will help with equipment. I remember at one point I felt inundated with different health officials coming to see both my husband and myself and at first we felt that is was all too soon but we needed them. Dieticians and nutritionists, community nurses and the most helpful for me was the OTs. A lot of people also find their local hospice very helpful and your GP can refer you to your local one. The most important thing is take all the help you can get, if you don’t get help then shout for it and try and make the time you have with your husband as happy as possible. If you need advice on house alterations there are lots of people on this forum who can give you good advice. My husband had a bed downstairs in our living room, all organised by the OTs, and although we were waiting for a through floor lift and other alterations we managed fine. There will be good days and bad, every day I did my best to make my husband laugh, sometimes just me doing bad dancing to music on the radio but it kept us both sane. Take care.Best wishes. Jan

[Redjune1 in reply to Tusker1953]

We’re still waiting for an assessment by occupational therapy to see what help we need. We had a letter basically saying that because of Covid they weren’t doing assessments at the moment

[Kaye31]

Hi there. We did one of those too and came away overwhelmed and that “it was the wrong group” for us but 12 weeks on we couldn’t be further from that view.We picked up so many useful tips.

He is moving in with me as I have a bungalow which will make lift easier but I am so scared. I’ve never cared for anyone and whilst I help with love the progression and what lies ahead is petrifying.

We cope as humans. We just get on with it.

I’ve only been a member a very short while but one tip I have read over and over is whatever is going on make some time for you to do the things you enjoy!

I’m going to do this and currently am. My friends are my lifeline and I will continue to have girlie drinking evenings, and meals out throughout just maybe alcohol free!

Take care xxx

[Redjune1 in reply to Kaye31]

I knew it wasn’t the wrong group, but totally overwhelmed by what I’m in for.I’m so worried about the fact we live in a tiny house with only one bathroom upstairs. IWe couldn’t sell it for enough to buy a bungalow either. I get so frustrated with it all

[Kilmain]

Hi, this is my first time posting and I was moved to post as I identify with your fears for the future, my husband was diagnosed earlier this year with Parkinsons plus, and we are currently having more scans etc to get a more definitive diagnosis. We live in a victorian house with a bathroom upstairs, and only a toilet downstairs. I recently applied to the local council for an assessment to see if our house can be adapted in order to avoid moving house,. I am now waiting for the OT to assess our home, but have been told the waiting list is approx 6 months. This is a worry when you know the condition is progressive. M is still managing the stairs which are steep, but I can see that unless a miracle occurs this won't last. I've been looking for a bungalow, but there are very few in my area, and I'm not sure how we would cope with the stress of moving house. I wake in the middle of the night racked with worry. Trying to live in the present as much as possible. But not always easy.

[Redjune1 in reply to Kilmain]

This is exactly how I am! I wake up in the middle of the night worrying and feeling totally helpless. Also, I know what you mean about moving, I don’t know if I could cope never mind Phil. We’ve accumulated so much stuff over the years and would need to get rid of it. I need someone to come in and just empty the loft for us. I know it wouldn’t change our situation but it would definitely make a difference to me.

[NicoleMSA Administrator Staff]

Hello,

I just wanted to add that if you have any specific questions, including about accessing services like OT, do please feel free to get in touch with us directly at the MSA Trust on 0333 323 4591 or [e-mail] and we will see what we can assist with.

Kind Regards, MSA Trust

[SamanthaMSAT Moderator Staff]

Dear Redjune1,

I totally understand- the first time at a support group can be quite scary. As you say, there are people at all stages of the illness and it does make one realise that things will become more difficult over time. The purpose of the support group is to make people feel less alone- shared experiences can be very helpful. The MSA Trust is here to support you in whatever way we can. I would be very happy to talk through some of your concerns if you would like to get in touch?

Kind regards,

Samantha, MSAT nurse specialist.

[Diane831]

It really is a difficult time getting your head around all that having MSA means for you both. I remember some of it, but I always found the support group meetings helpful, even if at time a bit scary, and was always inspired by the brave people we met. Do use the support of the MSA trust that is offered, they can be a real lifeline. And do try to make the most of what you can do now, and in each stage of ‘now’ even when that changes. And people on this forum will have done different things to deal with the situations that you find yourself in, even though your journey will be unique to you. Try to hold in balance the need to face the future but without losing living in the present.

Best wishes, Diane

[FredaE]

you are going through the worst stage of coping withmsa now.

yes i know that sounds mad but it is true

You have had a glimpse of all the awful things which may happen - and that is the important word - MAY happen - .

[Redjune1 in reply to FredaE]

So it’s not a forgone conclusion that someone with MSA will go through all those stages?

[FredaE]

I had to go out and only posted abrief reply to you

This thing is called MULTI system Atrophy because a selection of parts of the brain malfunction. there are plenty to chose from,and people cannot have them all although they tend to increase in numberas time passes. an example is bladder problems you may be incontinent or suffer from retention. If thefirst it has ramificatons for your social life but the second may mean a tendency to UTIs. two different problems and two different ways of managing it. MSA-P has a differentset of symptoms from MSA-C. the two may overlap but forexample my husband had absolutely no pain but some

people do

after a time you begin to learn what "your"MSA involves and it does become easier to see your way. it changes with new symtoms but by then you are beginning to realise your own strength and resilience and it becomes easier

[MF31]

We have also got occupational therapist involved and luckily we have got space downstairs to convert for bedroom and wet room and are hoping works will start within a couple of months as like you things need sorting before we get to that stage when we need wheelchair indoors, he does sleep downstairs at moment but no shower facilities. I hope you get things sorted as it is all quite daunting.