Mobility

Happy Easter today to anyone in Australia & to everyone else wherever you are & whenever it is for you.

I would like to hear from anyone dealing with CBD. Whether a carer or with people this condition in regards to mobility.

Was losing this another slow process or did it happen quite suddenly? Also & I know everyone's different but how long into the condition did it happen.

My husband with CBD seems to be starting to drag his feet more when walking, just want to know if I should start to prepare.

Thanks in advance for any advice ir imput.

Kerry

17 Replies

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  • Happy Easter Kerry from East Yorkshire, England. Loverly sunny morning here. I am almost a PSP expert but not able to help with CBD. Peter.

  • Where in East Yorkshire are you? I used to live there!

    Marie x

  • Driffield and my psp wife in a lovely care home in Bridlington.

  • Crikey! I used to live in Driffield well for about 7 weeks! Used to do my shopping in Bridlington when my husband and I lived in Bempton. Then lived in Scarborough! Lovely to find someone on here who knows these places.

    Marie

  • Hello Kerry Ive had this disease for over 10 years and my dragging of feet is getting worse for have a walker in the home and near me at all times ! Have a scooter to get out and about down town, only live 5 minutes away from the sea side so when weather is good I often go down and admire the view! I have chronic stiffness though out my body and have a excerise bike and a massage chair to ease tightness ! I take meds for parkinson disease Sinement every 4 hours sometimes it works rather good to help to walk etc. I have a cleaner who comes every week to hang out washing / vacum etc ! I hate this disease but when get too down with crying I try to think there are worse off than me, but without a cure the future is very scary. Welcome to keep in touch ! Take Care Shirley Norman

  • Thanks for the info Shirley. My husband walks everyday twice. The specialist told us that's why he is as good as he is. I have noticed how much more stiff he is and his gait has changed along with the dragging his feet. Unfortunately he is also becoming more confused & his speech has deteriorated markedly.

    You sound very cognitive Shirley, I wish you well.

    Kerry

  • Kerry

    Can't help with CBD but my husband progressed quite quickly with PSP/MSA. Having said that some people last years before they struggle with walking. I think we ignored a lot of things at the beginning so he probably had it longer than we thought. Have you read up on CBD?

    Sorry I can't be more helpful.

    Marie x

  • Yes I have thanks Marie. You just get the generic speel. I feel I get more helpful advice from places like this.

    Take care

  • hello Kerry

    My husband has CBD - first diagnosed in 2012. He was walking well until very recently when he started to fall - always forwards, the complete opposite of PSP!

    He ended up with aspiration pneumonia in hospital for seven weeks and is now bedridden but I think it is as much the enforced lack of movement in hospital as the disease itself. Keeping moving is vital, but it is a tough call. My husband got fed up with me nagging him to do exercises but he was always happy to walk. Good luck and I wish you both all the best.

  • Thanks Rowan. My husband was diagnosed in 2012 also. We haven't had any falls yet, lots of trips but thankfully no falls.

    My husband enjoys walking & would walk all day if he could...between sleeps. We try to get him outside as much as weather permits. He's always better on those days. Though at the end of the day he can be quite confused due to tiredness.

    Sorry to hear of your husband's decline I also wish you both the best.

    Take care

    Kerry

  • hi Kerry

    I was just wondering whereabouts in Aussie you live?

    cheers Bindi

  • Bindi we are in regional QLD. Out near Goondiwindi. 2 hours from Toowoomba (closest city) & 4 from Brisbane.

  • Love the names of the places xx

  • Hi again there Beau - wow, you would have to be one of the closest to us on this website - we live in Birkdale which is a suburb of the Redland City Council (just outside the Brisbane City Council domain). If you ever need to come to Brisbane, please let me know and we shall endeavour to catch up with you (except for the next 6 weeks as we are going over to Canada!!).

    Cheers

    Bindi

  • Thanks for the offer Bindi. Oh wow Canada you lucky thing! Hope you have an awesome time.

    May I ask what brings you to this site. Have you a loved one with CBD or PSP?

    And have you accessed the NDIS as yet. Interested to know any info on that.

    Bye

    Kerry

  • Hi there again Kerry... actually, unfortunately, I am the one with the horrible diagnosis. Fortunately part of my brain is still working and thus I am typing this response to you!!!!! My wonderful husband of 6 years is absolutely brilliant and I am just sooo fortunate!!!! I haven't any of the real nasties as yet eg the swallowing difficulties and the PEG dilemma......the worst symptom for me would have to be the falling backwards of which i have had over 100 in the last 15 months- but I am still reasonably independent. If I can help out at all, please, let me know (although At present, hubby and I are currently on holidays over in Canada 🇨🇦.

  • Hi Bindi

    So sorry to hear you have this awful condition. I wouldn't wish it on anyone. The falls must be very scary. Fortunately for my husband he hasn't had any as yet. It never ceases to amaze me the differences in presentation & progression. My husband isn't having any obvious problems with swallowing though I do notice he eats much slower & complains of the meat being tough when it's not, not sure if that is a prerequisite or not. So happy you have a good partner to help you. I couldn't imagine how much harder this situation would be without loving support. We have family around us so we are very lucky. Anyway you take care & have the best time in Canada. And thanks again for your kind offer. The same goes for you if there is anyway I can help please don't hesitate to ask.

    Best wishes

    Kerry

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