Recently diagnosed with cbd

[Gardening51]

Hello I was diagnosed with cbd in November; I live in north London and go to Queen Square. Not pleased with them. I'd love to hear from other sufferers about their lives, symptoms, and how they cope.(or not)

[messier]

Hello Gardening51. Welcome to this site. Can you explain what you're not pleased about with Queens Square? If you are able to look around this forum you'll see that most people say that Neurologists are not much help. Even the ones who know about CBD like the people at Queen's Square - simply because there is no simple pill. My mum has CBD and we haven't even got to a neurologist to diagnose it yet because she kept being referred to the wrong type of neurologist and we're now on a 7 month waiting list for the next one. In the meantime I've worked out what it is! Get the local social workers and the district nursing on board - they are much more use. And we've paid for sessions privately with a neurology specialist physio which have been great - if you can afford it I'd recommend that.

[Dadshelper]

Welcome to the site. I can't offer any advice on neurologist near you but I'd suggest using the search at top of page and just browse any thing you may want to know. Then ask any questions you may have. There is a massive amount of hands on experience here.

Ron

[Tippyleaf]

Dear Gardening51

Welcome though really sorry you have had to join us.

My husband had PSP and was seen at Queen Square for 6 years .

I learnt to write a list of questions I had and take the list along to the appointment. E.g legs getting stiff, speech changing , utinary problems etc this then focused the appointment on my husband’s needs at that time. Could someone come with you and help you with this at the appointment?? I was really impressed with the knowledgable physio, OTs etc though later we moved the therapy services to nearer home as the car parking is a real challenge at Queen Square.

The NHS is very sadly so stretched these days I don’t think there is a perfect Neurology service. But the Neurologist along with your GP will be the gatekeeper to the support services you will need in the future . I guess the Neurologists also want to allow time for patients to process all the information too. Physio, occupational and Speech therapy are key to maintaining a good quality of life - if you have not yet started these therapies request for those assessments at your next appointment. Hope you can make QS work for you too

Love Tippy

[knitting62]

Hi Gardening 51

I too have CBS and was given my diagnosis in October 2019. I have been rather low in my mood recently and I've been crying at anything and everything. Yesterday that changed I've been taking an antidepressant and it must have kicked in. I know that I'm not going to get better but I will make the most of the time. What symptoms do you have? My left arm and leg are affected and weak so much so that I thought I'd had a mild stroke but my face wasn't affected so I thought that it would get better.

[Gardening51 in reply to knitting62]

Hello, thanks for replying. My main symptoms are speech problems and a useless right hand. And I think shakiness onmy feet is just starting. Yes, like you I sometims feel very down and hopeless, and curse whatever fate brought me to this. But generally I try to keep very active - I do aerobics and go to the gym, and try to keep what remains of my brain working by doing puzzles etc. I hope you feel ok today and can manage to smile inspite of this poxy disease. xxx

[Dance1955]

Hi Gardening51 so sorry to hear your news I used to live in North London now we live in Australia My husband was diagnosed with CBD in the beginning roughly 2013 then a couple of years ago the diagnosis changes to PSP they are similar both horrible diseases that no one seems to understand except the people on here that have lived with it

Good luck with your journey hopefully you will be fine and no one is god at the end of the day think positive and deal with circumstances as they arrive and remember every one is different

Best wishes to you just come on this site if you want to let if any steam they are all lovely here ask anything you will get answers

Take care my friend

Irene 🤗

[ncgardener799]

Welcome, this site is wonderful, but sorry you have had to join us all in the journey. Lots of support and advise. I live in US so health care is very different here. My husband has PSP. It took 4 years to get a probable diagnosis (postmortem brain autopsy is only certain way to confirm diagnosis). I take my husband to a movement disorder neurologist . They are more familiar with PSP, CBD etc. She was the Dr that finally told us PSP was his problem.

[SewBears]

Hi Gardening51! Nice name and I hope you garden a lot and that you enjoy it. Finding things to do and keeping busy will go a long way in improving anxiety and depression. Try to take one day at a time and appreciate everything that you can still manage. CBD is a cruel disease and I’m so sorry that you have been diagnosed with it. We cope by putting one foot in front of the other and we try hard to live in the now. One of the first things that I did was to get our papers done (Medical power of attorney, including wishes for end of life, Wills, etc). I made sure that beneficiaries on any retirement funds and life insurance policies were all up to date. After paperwork was in order I found it easier to relax. I hope that you have friends and family to help you. Also, everyone reacts differently, so please keep in mind that just because you read something terrifying on this forum, that it doesn’t mean that you will experience the same thing.

I live in the US and I’m a caregiver for my husband. Our coping skills are to laugh at silly stuff, play lovely music, try to exercise and not beat yourself up if you need to skip it. Most importantly we try to remain as positive as possible.

Feel free to vent and ask questions. You have found people on here who understand and you are never alone.

❤️ from I SewBears

[raincitygirl]

Hello Gardening,

My husband had CBD and he did pass (at 79).

I can say that while he did lose speech, word-finding etc (written and verbal) he was able to eat, walk a little (though he was just at the beginning of wheelchair use when he passed) and enjoy TV and my company until the day he died - in other words he “lived” until the end, even if limited. (We worked hard at physical exercise as long as he could stand it.)

It goes to show there is no one route through the disease - so despite some scary histories here, there are others that aren’t so scary. (In no way intending to make light of it - I don’t.)

Hugs and the very best of luck to you.

Stay strong! ❤️😊🥊. (Looks like a kidney but its a boxing glove 😉)

Anne G

[Spiralsparkle]

I'm so sorry that you have had to seek out this forum due to your CBD diagnosis.

You will find it an invaluable source or support and information.

You are not alone now you are here.

You can search topics at the top or if that is too much for you ask questions.

We are here to listen & help where we can.

🙏🙏🙏

[knitting62]

Hello, I too have been recently diagnosed with CBS in November. I live in the UK in Sussex on the coast. I've been experiencing coughing and falling backwards, I can't walk unaided now. I go to my local hospital for physio and I have a loving family and three children and four grandchildren who I wish I saw more of.

I'm not sure how things will pan out for me but I don't think that it's going to be that pleasant so I don't think about it too much just keep doing my exercises to keep my legs as strong as possible.