Anti depressant

[Ellie]

When going up straight I could weight bear but only for a short time.

The sling helps a lot, so you never know 🤞🤞 xx

[DeeH]

Heather R

Got the MND nurse to contact the eye place as Thomas is due a cataract review for a op.

Told that he can lie semi reclined for the procedure

Best of luck

[Rosemary6NT]

Rosemary6NT I am experimenting with oramorph too. Have been offered a cataract operation next week on the 9th provided I can lie flat or nearly flat (trying to get the exact angle!) for 20 minutes without NIV (my under the nose mask apparently gets too near my eye). Oramorph helps, but I have to be alert to follow instructions. Xx

I had my PEG done at Oxford where they could carry out the procedure with me ina hospital bed tilted at something like 45degrees. This allowed me to breathe more easily. Do you have to be horizontal for the cataract op? Oh, just checked, I see you do 🙄

[Rosemary6NT]

It's not that long ago that you were using the Molift which requires you to weight bear - was that a struggle?

I am hoisted using a standing hoist but the sling only goes around my torso, so pulling up bottoms isn't an issue - it's a step up from the Molift, battery powered, so no 'lifting' by your partner involved. xx

Difficult to judge as when Chris was pulling me up on the Molift I would sometimes swing to the left and would be unable to straighten my knees so couldn’t weight bear. When going up straight I could weight bear but only for a short time. My legs, arms and core are so weak. Amazing to think this time last year I was walking about thinking I just needed a bit more exercise. 🙄

[matthew55]

I take 15 and stay non fuzzy 😁😜🤗❤️xx

[Heather R]

Rosemary6NT I am experimenting with oramorph too. Have been offered a cataract operation next week on the 9th provided I can lie flat or nearly flat (trying to get the exact angle!) for 20 minutes without NIV (my under the nose mask apparently gets too near my eye). Oramorph helps, but I have to be alert to follow instructions. Xx

[DeeH]

Shelly, I've been in my wheelchair full-time since 2008, couldn't walk one step to save my life (literally), but I am still weightbearing for transfers - it ain't over 'til it's over... xx

Ellie

That is amazing to know. Thomas stopped walking safely a year ago but transfers still unchanged. Legs still 4/5 according to physio. We do the transfer tango together. Obviously carers would use the stand aid.

and Rosemary6NT maybe get the OT to try the stand aid with you, you have to be able to weight bear. But have supervision. Thomas my husband can still moves his legs (does leg exercises in bed) just his top half stoop, pulls his balance off. I am a trained nurse with lots of moving and handling experience. But 5 feet to his 6 feet so it is an interesting experience. We are both aware of the risk.

It is like a dance, I support one arm and move as he moves his feet, like a side step.

After realising that I couldn't support Thomas off the floor and 2 ambulance calls (they were lovely), plus the fear of him falling and breaking something. We actually use the commode/shower chair for moving from the bed to chair as new place so small.

Best of luck

Edit to add
Thomas diagnosed in July 2020 with MND of the fail arm kind

[Ellie]

I can’t walk or move my legs so assumed I couldn’t weight bear… It would save a lot of hoisting hassle…

It's not that long ago that you were using the Molift which requires you to weight bear - was that a struggle?

I am hoisted using a standing hoist but the sling only goes around my torso, so pulling up bottoms isn't an issue - it's a step up from the Molift, battery powered, so no 'lifting' by your partner involved. xx

[Rosemary6NT]

Shelly, I've been in my wheelchair full-time since 2008, couldn't walk one step to save my life (literally), but I am still weightbearing for transfers - it ain't over 'til it's over... xx

That’s interesting, I can’t walk or move my legs so assumed I couldn’t weight bear… It would save a lot of hoisting hassle…

[Ellie]

Rosemary6NT I'd say it would take a lot more than 1-2ml of morphine to fuddle your brain Rosemary 😉😍😘

[Rosemary6NT]

Oh good - I presume it's liquid morphine at a very low dose? xx

Yes 😀

[shelly21]

Yes liquid morphine 2.5ml. I've taken one dose today for hip and it does help. I'm on Mirtazapine and it knocked me out the first night but then last 2 nights been wide awake. I know I need a few weeks for it to work x

[Ellie]

I’ve just been prescribed morphine for my breathing

Oh good - I presume it's liquid morphine at a very low dose? xx

[Ellie]

... thought that by using my wheelchair i will use my ability too stand etc

Shelly, I've been in my wheelchair full-time since 2008, couldn't walk one step to save my life (literally), but I am still weightbearing for transfers - it ain't over 'til it's over... xx

[shelly21]

Heather R I so agreed with you re the thought that by using my wheelchair i will use my ability too stand etc. I am doing twice daily leg stretches and I'm planning on walking very short distances just to keep a bit of weight bearing x