Hello,
Thank you for accepting me on this forum.
My husband has recently been diagnosed with MSA, after an initial diagnosis of Parkinson's Disease and then Cerebellar Ataxia. It has been a shock, but also not a surprise as his symptoms have worsened over time and don't match the Ataxia diagnosis anymore.
We have 2 young adult sons who still live at home and we are all 4 trying to carefully figure out what this is going to mean for us all.
A very warm welcome to you and your family! Perhaps this is not quite the sort ofclub that you once aspired to be in, but you will find yourself surrounded by a bunch of super supportive and knowledgeable experts by experience. It will be an invaluable resource both now and in the future.
I am afraid I have no magic tips to get you through coming to terms with MSA and I often wonder if one ever does- it is a disease that is full of surprises! My own approach has been to plan for the worst but never forget to enjoy the best that life offers in the meantime! Good luck and speak again soon!
Perfect words Gill, I couldn't add to this DeepBlue. You are very welcome, it's just a shame you need to be here. Take care, Ian
Nicely said Gill.
Also visit the MSA trust web site as there is a wealth of knowledge available and the staff are super helpful and resourceful.
We all have different ways of dealing with the changes ahead but acceptable and adaption are key.
Good luck and ask away
Paul - Sue
Hi, Deepblueocean
MSA diagnosis comprises symptoms of autonomic dysfunction, parkinsonian symptoms, and cerebellar atrophy. Hence, there may occur delay in diagnosis if the neurologists are not being very careful about their job. Please don't worry but be alert about caregiving. Don't let him fall if he has problems with balance. Contact the MSA Trust for assistance. Best wishes to all of you.
It’s an awful illness but I cherish the time I had with my Dad - we made sure to get him out & about as much as possible & made wonderful memories & Dad loved being out & about & still experiencing life as best he could xx Our experience was challenging but stayed positive & adjusted accordingly & im so content that we made the most of our time xx ♥️
I’m very sorry that you have been be here but you are very welcome. This is a great group. Ask away because everyone is very knowledgeable.
Thank you all for your very supportive replies. It does help to connect with people who share similar experiences. Life has become such a roller coaster ride! And it's hard for friends and family members to truly grasp the changes, strong emotions and fears this diagnosis / disease brings. We are all surely learning to live life day by day, and to expand our hearts and strengthen our courage with every little setback. Much love to you all.
welcome to the group. MSA is a complicated condition and my husband was initially told he had atrophy of the cerebellum then a year later got the MSA diagnosis. Involve as many professionals as needed. We asked for a named Doctor for consistency which helped as she agreed to visit every couple of months but made it clear to call anytime there were worsening symptoms. It’s very difficult to accept and took us a year to actually get our head around it.
You’ll find your own way. My only advice would be take each day as it comes and adapt to any new situation.
Best wishes
welcome deepblueoceans. There’s not much we don’t talk about here – it’s a safe place. Please feel free to ask questions or contribute as soon as you feel ready.
Tim
MSA-C with ataxia rebound
Rant about GP
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