Hi, I'm Stephanie and I live in the UK. I was recently diagnosed with CBD, two weeks ago, and having read the different posts here I know that everyone is different but it's horrible not knowing which road this disease is going to take.
My left arm and leg are affected which is better than it could be because I'm right handed so that is my stronger hand.
I have had many falls but I have good care from my partner so I always feel safe when he's around because he knows what to do.
So sorry to have to welcome you to the group. This site is a mine of information. I would also recommend you get as much information from the PSPA as you can. Their booklet a professionals guide to CBD is a mine of information. If you are in the NW of UK the Liverpool group is meeting on Wednesday of this week. That has been a mine of help and information for me during our journey with CBD. Ken.
What does pspa stand for?
Sorry, PSPA stands for the PSP association in England which is the charity that sponsors this site. If you Google PSPA you may find the PSP association for the United Kingdom and also PSPA for the United States. Both are very useful sites and doing similar work on both sides of the pond. (Atlantic Ocean)😏
Best wishes. Ken.
Welcome to the site. Feel free to ask any question about anything and I do mean anything. Come here to vent as well. Everyone will understand.
Thank you for this I'll remember that when I have a question.
Welcome Stephanie
My husband has died now but I still come on here. It's like a worldwide family and I don't know how I would have survived without it, although I have a supportive family. Here you can vent your fears or rage or black humour and we all understand.
Love Jean xx
Welcome to the site. Dad was Dx with CBD but it was never comfirmed via autopsy, the only 100% accurate method. He started with a few falls and then the loss of right hand/arm use. First thing was his ability to write.
This is great place to ask questions, read back posts or vent if necessary.
Ron
How old are you x
I'm 63 and my partner is 70 he's an historian and writer, he's around a lot but also works away abroad for research and to have a break.
Hi I was diagnosed cbd nearly three years ago,aged 59. Left hand and leg went first which ,like you , was at least some consolation as I too am right handed. The worst thing for me is movement and balance issues and internal shaking that no one else can see. I have also had falls,luckily nothing broken as yet, but very nervous of going out without my rollator, which has been a godsend.
Are you in the UK? Jayne x
Gosh, this sounds so much like me. I don't have the internal but I do have some external shakes some of the time, thank God it's not all the time.
I should read your more thoroughly! You said you were in in the UK! I am in Norfolk and there is a support group that my husband and I go to. The PS PA will have details of others round the country. Take care,Jayne x
Welcome - you must still be reeling from the news - but you have found the right site. So much experience, kindness and support here from others who are on or who have been on a similar journey . Your husband may also find this site helpful.
Ask away - no topics off limits here!
There is still much joy and good times ahead mixed in with a few crappy ones of course!!
Love Tippy
Thank you for this, I'm finding this site interesting and a little scary at times knowing what's going to happen ahead but I'm amazed by the resilience and strength of some people that I get hope of a future even if the outcome is known.
Welcome to the site. Are you and your partner retired or still working age? I ask because if your partner can't be around in the day you will want to get various devices and adaptations to make it easier to cope. You can get some of these via your council adult social services if you ask for an occupational therapy assessment. Encourage your partner to look at the site too as there's loads of useful advice.
Yes, I've got carers to bath and help me dress . I also have grab rails and a four wheeled walker. Sometimes my partner works away but since the diagnosis my family have rallied round, just shows what a bit of bad news can do.
Welcome again Stephanie, Glad to see you did a post 👍
As you've already seen, one of the great things here is that we have members who are "first hand" participants like yourself. Jayne has replied; there is also a very interesting member named Bargiepat. He isnt posting a lot now, but he checks in, and he has a history of interesting posts about his travels and hobbies while coping wirh CBD. Look him up!
And have you seen Richard33's posts "Things to do with CBD"? Brilliant!
I hope you find some inspiration as well as support here ❤️❤️
Anne G (hubby had cbd)
Thank you , I will try and find the people that you speak of.
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