We wanted to send our good wishes to everyone for Christmas and the New Year ahead however we recognise that whilst for some the hope is to make new memories to treasure for ever; for others, its a very difficult time of year.
For those who have lost their loved ones and for the many who are just struggling to manage day by day you may be asking "how can I possibly be happy this Christmas?". Therefore our wish for everyone is that you have as good a Christmas and New Year as you possible can in the circumstances.
For those who read this, why not shout out your good wishes as well and if you've not posted before, why not click that reply button and say 'Happy Christmas to all'.
Whatever this year brings, our thoughts are with you. Take care, Ian & Jackie xx
Written by
Yanno
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For us as a family we will be raising a glass to my dad may he rest in peace. He lost his battle with MSA last month and therefore our Christmas will be very different and probably difficult.
All other families who family members lost their battle I will be thinking of you too.
All those families who are still battling with MSA you are doing a fantastic job either looking after your loved one or actually battling the disease. Stay strong you are amazing.
Sending everyone positive vibes.
Merry Christmas and best wishes to all for 2020.
Keep spreading the word and fundraising let’s try to eradicate this disease by assisting research.
Just before Christmas is the shortest day. That at least can only get better. Thank you Yanno for your lovely post..and all your other posts during the last year. Wishing a Happy Christmas to everyone and hoping you find some small pleasures to comfort you even if times are difficult for you this year
Thank you Ian and Jackie, the sentiments you have expressed will mean lots to everyone on this site going through their own personal journey with MSA. We ourselves are hoping that dad will be awake enough to experience some of the Christmas festivities. As always, we just go with it and try to make it the best it can be for both my parents and make sure they know they are loved and appreciated beyond words.
Wishing everyone on this site love and warmest wishes and hoping that we can all create precious memories.
Happy holidays everyone! May the New Year bring you joy.
We continue to live our new normal. I put Christmas items all over the house for good cheer and celebrated with family.
I felt guilty for celebrating and having fun. I know that being depressed and sad is not expected. I just feel odd because we know my husband has this awful disease. Is it wrong that I can now discuss his illness matter-of-fact without crying? I feel that we cried and moved through that phase. We are just trying to make the best of everything.
Do not feel guilty you are doing a great job of supporting your husband with this awful disease.
This is your life now and you have to live it the best you can. Enjoy the bits you can make as many memories as you can. Honestly those memories are keeping us going (even the bad ones!)
Sending you positive thoughts ...
Here’s to 2020 and please god they find a cure for this wretched disease so that others don’t have to join this unique club.
Thank you for your kind words. Sometimes caregivers just need to hear words of encouragement and that we are doing all that we can. You sound like such a wonderful caregiver.
I am still very scared about what the future will bring. I find myself jealous of happy healthy couples enjoy themselves. I know I need to get past it. Right or wrong, I am learning to compartmentalize for the sake of our school age children. I want them to live a normal life as much as possible. I had a very sick parent for years growing up and it has affected me into my adulthood. I want to minimize that for them but I know it will be challenging.
Don’t feel guilty, as Kewimagic has said you are doing a great job supporting your husband and I’m sure he wouldn’t want you to be sad.
Jackie and I, early on, went through a stage of ‘slamming the door’, saying ‘it’s not fair’, and having a good cry. Then we made a pact with ourselves that we would do everything we could to enjoy our time together, be as positive as possible since being sad helped no one.
Take care and enjoy your Christmas decorations. Ian x
Ian, you are so positive and full of grace. You are an inspiration to live by.
I read an old post from you about getting a signature stamp which I have done. I also purchased grab bars for my husband to use the bathroom. I was going to buy a walker for my husband and he said he did not need it but we both know he should have one. Holding on to a family member at times to walk cannot be the answer. It’s a matter of time and I understand that.
My husband is still in a bit of denial. We have been to see various neurologists and another one confirmed the MSA diagnosis. It seems sometimes that they are more excited about having a patient like him and want unnecessary testing so we navigate that through a lot of research.
I have a question, when does one stop driving? We spoke with the neurologist and he said he was fine. How do I know when to take the keys away? Selfishly, him driving the kids does help me.
Hello and thank you for your comments. I always say it's Jackie that helps me to help her. She tries so hard and her first worry is always for me as her carer.
As far as driving is concerned, I don't think we can help you much there. Jackie's very first symptoms were connected with balance and we thought she'd had a stroke. Whilst Jax loved driving (she used to be a local rally driver in a previous life), she chose not to drive fairly early on as she was worried that she may not be safe.
This all connects with your husband and his walker...or lack of a walker. So many people we know with MSA have suffered falls which inevitably worsen their condition and yet Jax has been relatively fall free as her balance was 'shot' and she knew she needed a walker and subsequently a wheelchair.
I say 'relatively' fall free as Jax injured her ribs very early on trying to do too much around the house and more recently we managed to topple out of the front door of the house, wheelchair followed by Jackie, followed by me!! Not my proudest moment I think!
Have you been intouch with your local OT (occupational Therapist) there will be specialised neurology ones based on the community, they will provide all the items you need free of charge and they will assess him.
Eg stair rail
Grab rails
Bed grab rail
Commode
Toilet seat raisers
Medicine administrator with a timer
Call alert
Walker
Wheel chair
Rise and recline arm chair
Slide sheet
Hospital bed
Please get in touch with your GP/PN to refer you
Anything that helps to keep him independent and improve his quality of life.
A pleasure to know you both and thankfully we have a healthy Christmas this year.
The new year will bring new challenges and with your friendship we face them all the stronger.
Have a great Christmas and New year yourselves.
Paul and Sue
All the best for the new year! With regard to driving, for us we had to ask Dad to stop. It was things like his spatial awareness declining so he couldn't quite stay in lane, and failing to judge risk as well as before. It was just from being in the car with him driving, and noticing stuff. It must have been hard for him, but he understood when we explained the exact reasons why. Hope that helps! Kx
Thank you KayR11. I realize the MSA journey is different for everyone but I find it helpful to hear from others. Did the spatial awareness decline happen early on? Do you mind sharing a little more about properly judging the risks as you mentioned? I just want to make sure I am aware of what to look out for. Not that adults are unimportant, but I have kids I need to look out for.
Hi, sure. It was maybe 5 or 6 years after his first symptoms occurred. (Dad is in year 11ish now since first ever symptoms of MSA-P.)
I'm a non-driver so it was hard to tell what is ok. But I could tell his ability to respond physically (eg to turn the wheel quickly in case of urgency), was becoming too slow, and he wasn't able to realise this. Or the lack of speed of him getting back into lane from the middle of the road, when there was oncoming traffic. I guess its a gradual process of becoming less safe. Almost like when you have an elderly relative who shouldn't be driving anymore. They start to get beeps from other drivers, and little scrapes/prangs etc. Lining up straight for parking became too difficult. He once did a slow 360 degree turn in the middle of a junction of 3 roads, where there wasn't a line of sight to all of the oncoming traffic. He also started to forget the route to places unless someone was in the car reminding him. He was on a lot of Madopar at that time. I'm not sure if it made things worse or better. I guess with your husband, you would start to notice things in general life too. Eg: in the house, he started to not quite recall which room was where.
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A retirement we couldn’t have imagined. 
Next steps: living will, DNR and options
Rant about GP
