Clinic appointment upsetting

[TinyLady]

Ellie - oooh a word to Google! Thanks 🙂

Tabbycat - yes, I think the benefits outweigh the missing being at home and with my family. Plus the "brave face" will finally get a rest xx

[Tabbycat]

TinyLady Glad positive things are happening for you. We have to make many difficult decisions on this MND journey, many we would rather not have to make. Having a supportive & experienced team will help you when making these decision. Hopefully going in for a stay will give you a well earned rest, physically and emotionally, both of which can be exhausting. Sending hugs 🤗

[Ellie]

Sounds like there is maybe a good reason then...

Yep, it's called retropulsion and is caused by damage to nerves. xx

[TinyLady]

Ellie - as soon as they have a bed. They said hopefully early next week. Shame because my birthday is next week and it would have been nice to have partied all night 🤣

Oh, interesting it is fairly standard to fall backwards! I thought I was strange and being a bit dramatic. Sounds like there is maybe a good reason then... other than attention seeking 😉

[Ellie]

TinyLady When are you going in?

I keep nearly falling backwards which the worst thing, rather than tripping forwards. Very odd.

Falling backwards is usually how we fall, rather than forward, Drama Queens and Kings that we are 🙄😍😍😘

[TinyLady]

Betty May - I know matthew55 made me laugh with that comment. Love this forum and the fact we don't need to take ourselves too seriously!

I have agreed to go in. I'm aware that I am not safe, I need to find out what is what - I've had this a while and so far just been getting on with it oblivious, so if this speeds everything up, then I need to accept the help. I'm so tired of struggling.

The physio looked at a few options, but with a combination of one arm and two legs not cooperating, plus fatigue after a few steps, I think the conclusion was not to push it. But once in there maybe we can tweak things and come up with a plan.

I keep nearly falling backwards which the worst thing, rather than tripping forwards. Very odd.

[Betty May]

Personally I love a good ramble, even if I fall over a lot. 🍁😘😁👀xx

I've no idea how to access more smileys than the paltry amount visible but I wanted a good ROTFL smiley for that one, it did make me laugh! (And no pun intended!)

TinyLady Hi, it's good to read that both the physio and the doctor were pro-active and helpful - and genuinely interested in YOU. Did the physio suggest any kind of portable aids that might help in the short-term or is that not an option? (Feel free not to answer if you don't want to).

It's a big decision to make - perhaps you could talk it over with them again once you've had time to process the idea as I'm sure you must have more questions.

Best wishes xx

[shelly21]

TinyLady I'm so sorry all this is happening but maybe things would move quicker if you had a stay in the hospice. I really understand the wanting to be at home but I worry re you being alone re your partner working and children at school.

At the hospice you could just take time to rest and be cared for until you mentally feel stronger. Then hopefully the care package could be implemented.

X

[denise]

At last things sound so much better. Let's hope things improve for you. Xxxx

[LindaB]

TinyLady glad to hear you're getting support now...it's understandable you'll feel overwhelmed. Whatever anyone says ultimately you choose the support you're prepared to accept....you're your own expert. Take care🤗😘

[matthew55]

Personally I love a good ramble, even if I fall over a lot. 🍁😘😁👀xx

[Rosemary6NT]

TinyLady I’m glad you had a positive outcome, not before time by the sound of things. Xx

[TinyLady]

Thank you for the messages of support. I had a bad fall yesterday and hurt my only decent limb which scared me 😆

Meeting with physio this morning confirmed what I feared. My right leg is also struggling and I am no longer safe walking. The left arm and shoulder are too weak to be much help too - so I'm out of options. She also had concerns about my cough and something to do with breathing hard into a tube? She was so kind and helpful. It was such a relief.

I then saw the consultant - I was so nervous based on previous experience... but he was also lovely. We discussed everything and basically they want to admit me immediately to the hospice as I'm not safe at home. Then they will coordinate and chase all the adaptations and needs for me, he also said I may need referral for a PEG and to visit respiratory team while in there. I asked to come home and think about it.

I'm so overwhelmed I'm not sure I even know where to begin. In a couple of weeks I've gone from fighting a misdiagnosis to this. But I'm thinking it is the safest thing to go for a few weeks and speed up help.

Sorry for the ramble...

[Betty May]

TinyLady Just a belated message to say I hope your meeting with the palliative doctor goes well today - you've really been through the wringer and you need somebody to come on board and help. Interested to hear how it goes.

Hugs x

[Stubot]

TinyLady I am so very sorry to hear how you have been treated. You should absolutely not be left in any doubt about your diagnosis - stressful enough without being made to guess.

I can definitely identify with some of the things you mention. Support does seem to be very disjointed and a postcode lottery - it’s a constant battle. OT and MND nurse have been helpful in connecting us to people. Local authority are appalling - the best way to get things moving with ours has been for me to wade in, and find out the name of the boss of the guy runs adult social care and speak to him directly. Could someone act on your behalf and speak with the council?

You should absolutely be able to access your pension. My wife is only a couple of years older than you. We used her pension to pay off the mortgage so that the council couldn’t force us to use it to fund care. If you have mortgage protection insurance, that may well kick in too.

Hope you have better news tomorrow.