Hi
I’m a 60 year old male. I have no family and I live alone. I got a formal diagnosis of PPMS a couple of months ago. A year ago I only had mild symptoms. Things have progressed though. I have weakness in my arms and legs. This has got worse pretty rapidly. An intention tremor in my hands and significant numbness and pain in my hands. I’m due to start an Ocrelizumab infusion in the new year.
Anyway I’m struggling mentally with it all right now. Even though I’m living independently at the moment, my activities are greatly restricted. I can see the way this is going. Things wouldn’t need to get much worse for me to need help. I rarely leave my flat as I can’t walk very far. I think my flat will become unsuitable before long as it is up a flight of stairs. When I look at the progression of my symptoms I feel that within a year or so I will no longer be able to live independently. I really fear needing to live in some sort of care facility. I’m 60 but a young 60 in my mind. Will I end up in 24 hour care with elderly and confused people? I don’t think there are many places for ‘younger’ people with just physical restrictions. I’m scared that I’ll get dumped in an old folks home.
As you can probably tell I’m in a bit of a panic right now, but I’m struggling to see any light at the end of the tunnel.
Hi
I thought I was straggling, 61 with fatigue and back problems and still trying to work About to start Ocrevus next week,perhaps we can compare notes? Have got family (my angels)with me and cannot think how you manage alone. I got a rented stairlift installed a couple of months ago and this has been a little “tunnel light”,
Aly
Hi Robj444
I’m sorry to read about your situation and the speed at which things appear to be moving at for you. You mention receiving the formal PPMS diagnosis quite recently, I wondered if you have seen any of the MS Nurses following the confirmation at all? I’ve found mine to be a wealth of information and signposting in this uncertain world of MS as a whole, but PPMS in particular.
I hope you do find the professional support you need to be able to work through your understandable concerns, but in the meantime you will find lots of MS’ers on here who can relate to what you are saying and who will offer their words of wisdom, comfort or support I’m sure. It’s not a club we choose to join but it’s brilliant to know that we are not alone. My very best wishes to you and everyone on this forum
Thanks for those thoughts. I’ve got a number for the MS nurses if I need them.
I’d had a bad day yesterday when I made the post. I had a fall on the bus. My first MS related fall. I’m feeling a bit brighter today. I will be sure to drop by here as things progress if I need advice or the opportunity to vent. Best wishes.
Oh no, plz no panic. I 2 am PPMS & I cannot be leave I have made it to grand old 60yrs of age but
It is what it is & we all just have to get along with life.
I live in Northumberland how about u?
but