Hello

[NetballMagic]

Hi there,

I’ve not posted here before. My Mum has CBD, moderate stages now and seems to be declining weekly. I’m petrified what potentially lays ahead for her, my eyes are very open to this cruel disease and my Mum (68) is in pain, she’s loosing weight, stumbles, poor dexterity and her speech is declining.

Breaks my heart that all she wants is to take my children out, her youngest granddaughters and CBD has taken it away from here. My girls absolutely adore their nanny (6 and 4yrs).

My parents stay with us most weekends and it just sucks. I’ve not point to make with my post here, it just sucks. Really sucks.

[bichonbear1]

Hi, I’ve not posted on here before either however, reading what you have just posted has really resonated with me as this is almost identical to our family experience. My mum was diagnosed in March after years of miss diagnosis. I have read so much to prepare for this in mind, my mum is the same age as your mum and it sounds like they are at very similar stages. It’s heartbreaking and I am trying to support my dad through this as much as possible. It sucks so much, I hate this disease.

[NetballMagic in reply to bichonbear1]

Having diagnosis helps without doubt, but it’s a lot of pressure trying to support our Dads, Mum, if you have a family and ourselves too. I’m sorry to hear your Mum has the same condition, but it’s strangely reassuring knowing were probably going through something quite similar.

[bichonbear1 in reply to NetballMagic]

Hello, yes it is strangely reassuring, that’s why I felt compelled to respond to your message because it was so familiar. The diagnosis provided some closure after my mum thinking she was going mad after being fobbed off my her GP. She was diagnosed by her GP with fibromyalgia about 4 years ago and that’s what we believed it to be until Autumn last year when things started to be so not right. We ended up paying a private neurologist to assess her as it was becoming so distressing not understanding what on earth was going on. I don’t have children of my own but siblings that do. We are all trying to get our heads around it all. I am not sure if there is a private message service on here, if there is please feel to make contact.

[NetballMagic]

I don’t know either, maybe we can find out and we can message privately 👍

[easterncedar in reply to NetballMagic]

You can use the chat feature to go private. Pretty easy once you hit the button. Best wishes to you both. It does, as you say, suck. I’m with you.

[Aprilfool20]

Its not an easy diagnosis to make. First they told me cbd in June 2017 ,thenParkinsons ,now MS A after doing all the research for cbd ! What troubles me most is not knowing how it started. One day I was line dancing and playing the guitar and the next I couldn’t move my fingers,let alone my legs for balance. I used to walk at least 3 miles a day as well. How times have changed! My lockdown will never be over.stay strong for her!N

[ARutzen]

Hey there, please keep in touch and vent and cry when you need to here. This site has been such a help when I start to see what the disease is doing to my loved one. It's a lot to digest and read about, but the more you know the better so you can prepare.