CBD progressing fast

[Mariawatters]

Hi all . I have coped well with CBD since I was diagnosed 6 years ago . I’ve had it for around 9 years or longer ..since July I have gone down hill rapidly . The fatigue and weakness is unbelievable. I can’t turn over in bed , struggle to get off the sofa and showering and dressing is a bit of a frustrating nightmare. My speech is dreadful . I have no power in my voice and when I do speak it’s low and mumbled and I rush it to get the conversation done.

I still try to go for a very short walk everyday or most days but I’m unsteady however sometimes it gets better as I get into it

I feel I have gone … I have to say losing my speech is the worst of all the things that going on. I can’t enjoy a conversation anymore because when I go to say something I stop due to the effort it’s all going to take

I have had a lot of stress this year …..My two sons were very ill ….. I had to leave my job due to being bullied out of it by the directors……. I had my house sold and boxed up ready to move to a small apartment and it all fell through. Then I lost my mum 8 weeks ago .

I know stress is a big factor in the progression of this disease so I’ve tried to rest and not stress too much about things . My mums death was a release for her but I wasn’t ready for how lost I would feel .

I have reluctantly accepted this horrible disease but I fought it everyday but feel I’m losing the fight.

Can anyone help me with telling me what to expect next . I know everyone is different but I’m lost

I had a telephone conversation with an associate of my consultant who said they would send for me for a face to face if that seemed necessary…I’ve heard nothing…

Sorry for the long post but I don’t know where to turn

[Chelle1981uk]

Hi Maria reading your message is just heartbreaking. My mum also has CBD and was first diagnosed about 2/3 years ago. She can no longer hold a conversation and is only able to say “yes, no, okay”. She is unable to dress or shower herself so we have carers in during the week to do this. My dad did it up until recently but he is also 73 and it was getting too much for him. I’m so sorry to hear about your mum passing away too; sounds like life at the moment is not being kind to you. I don’t really have a lot to say but wanted to let you know you’re not alone in this and this forum is always here when you need to talk/rant/anything! Take care x

[Mariawatters in reply to Chelle1981uk]

thank you Chelle . It does help knowing you are all out there to talk to . I’m so sorry about your mum .. God bless you all 🙏❤️

[Chelle1981uk in reply to Mariawatters]

You’re very welcome. Life is tough right now, for all of us. I do hope you use this forum whenever you need to chat or need reassurance or just anything. Take care and thank you 🥰

[messier]

Hi Maria It’s so difficult to advise because everyone is so different. My mother hasn’t walked for over two years but has only recently started to get speech difficulties. At an earlier stage we got her a device that helps to lift you up from a seat (like a cushion with a spring in it). Having the right sort of walker helped too. We put in rails around the house and refitted the bathroom. We had to pay for these but you may be able to get social services to help.

[Willowden]

Hi , no advice really other than your previous posts have shown your strength and spirit and that will always be with you, even if some days it’s feeling the strain. You have had a lot going on.

Maybe time to thing about a bit of help, to make those frustrating and tiring jobs a little less draining? It might give you a little more energy for something else.

Big hug xxx

[Mariawatters in reply to Willowden]

Thankyou Willowden .

It’s so hard to accept I need help . I just cleaned my windows which took me about 2 hours a job I could have done in 30 minutes before . I can’t believe how unsteady I have become . My right side is affected now so I know that why my balance is bad . It’s so frustrating not being able to get professional help or advice …. I’ve lost a few friends also as I know they don’t want to be bothered with the condition and it hurts so much you certainly know who your friends are …. I can’t drive anymore which was my freedom . I’m sure I’ll settle down and get ready to fight again . To be honest I’m a bit frightened … silly really when I should have known what ahead of me …

[ARutzen]

hey there, it’s Amanda Rutzen, I haven’t been in this in a long time and just saw you posted. After reading this, I just wanted to let you know I’m here to help if I can. I saw what happened to Mom. So I know now. Let me know 💕 love and light

[Mariawatters]

thank you Amanda I was giving you time after losing your mum before I contacted you . I think your mums passing hit me how real this is .. I hope you’re ok ❤️

[LuisRodicioRodicio]

Hi Mariawatters!!

No one should go through this disease without company and great help for the tasks that arise.

Moving and being able to perform tasks is very good and desirable, but taking precautions to avoid falls and strong blows.

It is important not to lose contact with family, neighbors or friends. Socializing and culturally distracting yourself away from home is also good therapy. To do this, having help will make it easier for you to prepare and, possibly, at some point or occasion, a wheelchair will provide security and save time.

Hug, luck and courage.

Luis

[Mariawatters in reply to LuisRodicioRodicio]

thanks for replying to me . I’m lucky to have 3 good girl friends who took me to Majorca with them . They we’re amazing as I only just started to deteriorate but they stepped right in. The friends who have left me aren’t worth thinking so I won’t

I’m so grateful for this forum as I honestly think it’s the best place to have a panic attack 🤯 or look for advise . Everyone who knows me says I’ll,beat this disease , there’s only me who seems to know I can’t ! It’s so good to talk to people like yourself who knows the truth of this nasty disease x

[Richard33]

Maria,

Sadly I think you can see from this forum how it is going to progress. It is a battle you will not win but you can slow it down.

Ruth is further along than you. But things that have helped her are:

SSRI antidepressants - Sertraline 150mg in morning and Mirtazapine 15mg to help sleep. They do not affect her in any negative way and from the start I thought there is no point being sad on top of everything else.

LSVT vocal technique to keep voice stronger - practise every day. We could afford a speech therapist weekly to keep us motivated.

Exercise exercise - static bike when watching TV - be careful getting on and off.

She now has a PEG as her ability to drink liquids was causing constipation etc.

It is hard for you as you seem to have to do everything by yourself which is a really remarkable achievement. But we have found a couple of local people to help out as a carer / cleaner / cook for £14ph.

(We are flying to Cork on Thursday to see new grandson. Luckily Ruth's sister is coming to help me out, but it will be nice to see the wee baby!).

Keep striving on, Maria.

Richard 🙂

[Mariawatters in reply to Richard33]

Thank you Richard for your reply … I have my husband who is amazing but he works full time . So I’m on my own during the day … I think I’ve turned a wee corner now of accepting the disease . I bet confused what’s accepting and what’s giving up !… one thing,I will ask Santa for is the static bike , I was a runner and find it hard to accept that those days are behind me 😔

On a lighter note . I was in cork in July , loved it !!! Enjoy your new grandchild ❤️ I have 3 and they are just amazing

[Zerachiel]

Hi, Regarding your speech, have you banked your voice yet? If not get on to it as soon as possible; if you can still speak enough to record a couple of hundred sentences then they can work with that and even repair words that you struggled with.Sadly my wife's voice deteriorated so quickly we never got it banked. Now she has a text to speech device but has to use a generic voice.

Have a look here speakunique.co.uk/our-voice...

[Mariawatters in reply to Zerachiel]

I have speech and language calling out would they know or have the facilities to do that ?

[Zerachiel]

They should know, if they don't mention it ask them! There is funding available with Speak Unique via the PSPA pspassociation.org.uk/infor...

[timbowPSP]

Hello Maria, my heart really goes out to you. I was diagnosed PSP 4 yrs ago at 76, now hobbling but voice fine still. Spoke with my doc yesterday who said "It really seems to be affecting you this year" Quite true! .... 2 week ago I was walking, and now it's a hobble. No idea what's coming next, or when. I've got most of my will, living will, all that sorted, to take the load off the kids, and if in the worst case I cannot do it tomorrow! Where are you in Ieland? .... I spent 4 great years at TCD. Also went famous potholing in Co. Sligo at Geevagh. With best wishes and love to you TimbowPSP

[Mariawatters in reply to timbowPSP]

hi Sorry I’m answering your questions in the wrong orders .. I’m in Belfast.

I haven’t seen a doctor in ages . I tried but received a phone call ! I was the same .. one week I was coping ok not walking great but managing well . Now I’m struggling to get on and off sofa . So so weak ! But I’m still fighting. I’m going back to yoga tomorrow night ! I’ll see how it goes

Thank you for getting back to me ❤️

[timbowPSP in reply to Mariawatters]

Oh Maria .... it hurts me to imagine where you are at! From Belfast, eh? Then you'll be a desperate fierce fighter! The more we get stressed with the 'condition' the quicker we'll go downhill, they say. So go easy on fighting, and give space for 'allowing' ... and be with friends and fun people much as u can. Love to meet you.

A friend yesterday (also with problems) told me "There's no point in complaining. It's likely to get worse ........ and then you really be able to complain!"

Black humour! Tim x

[timbowPSP]

Me again .... I have just banked my voice, tho they need a few more sentences to complete. I was with 'speak unique.com' and needed their help to do it. Dunno how to use it yet, that's coming. First impression is def recognisable as my voice, but very 'growly'. Here in UK cost is £175, but seems to get paid for by the NHS. Good luck! Timbow

[Mariawatters in reply to timbowPSP]

thank you. I have speech and language coming out

So at least I have a name for the gadget now 🤪

[bichonbear1]

I cannot imagine how you are feeling and going through. I have experienced things through my mum who has CBD and went downhill quite quickly earlier this year. One day being able walk with a stroller in and out of rooms (my parents moved to a bungalow once the diagnosis was clear) to the next day not being able to weight bear at all and has never walked again. My best advice is to prepare your home now so it is geared for lack of mobility living…..handrails, wet room style bathroom, access upstairs if you have upstairs living. The waiting times for occupational therapy can be long so I would get them involved at the earliest opportunity, once you are registered with them the support is invaluable when it comes to mobility equipment. Try to keep moving as much as possible (but safely to avoid falling), keeping muscles and their memory as strong as possible. It’s horrible to talk about and mention but if not already organise power of attorney for health and finances as soon as you can and discuss with your family your wishes. Keep socialising and create fun times….do the things you love and enjoy. It’s also important to make sure your husband is confident he will have the support he will need and fully aware of how things will be. My thoughts are with you.