Neuro Rehab Community Team (Physio) visit yesterday💙
For about 2 weeks I've been feeling increasingly breathless...even just standing leaving me gasping for air. Coupled with this my cough strength is virtually non-existent. Having episodes of coughing trying to clear my crackling chest; causing numerous sleepless nights.
Reading posts in the forum I figured I might need a cough assist machine....saline nebuliser....medication to thin secretions or all the above.
I mentioned my thoughts to the Neuro Rehab Community Team & they advised they dont issue respiratory equipment (that's the hospital respiratory team) however they do assess/measure cough strength. So yesterday a physio (new person to me)from their team came about 3ish. My daughter was here to act as my voice & I asked her to write notes (I know...you can take the girl out of social work blah blah)
I mention the time only because fatigue is usually greatest for me p.m....add to that no sleep....gives you a picture of how I was feeling.
She asked me a lot about respiratory support I've had so far....lots of talking for me..with my barely decipherable voice (which my daughter still mainly understands)
So then for the 1st time since diagnosis someone measured my cough strength!!! Using a hand held gadget with a mask at one end that I coughed into. I say cough my pathetic attempt (x3) could barely be called a cough and only registered 100. Which is the lowest score. Physio advised this flags up a need for a cough assist...she will liaise with hospital respiratory team.👍🏻
Next she says she's brought a rollator for me...produces from her car....not what I was expecting...I'd call it a walking frame with 2 wheels. By now my fatigue feels overwhelming...& I tell her really I need a rest on my bed with NIV.
She suggests walk with frame to my bedroom...try it out. Then I can use NIV. Off I go....gasping like a fish out of water. Make it to my bed and the refuge of NIV.
Physio suggests various exercises that can support/aid coughing using the NIV machine...wow who knew....so a big tick for my learning. Three exercises including breath stacking using NIV...ending on a cough. For this you do need to be able to remove the NIV mask so if hand function doesnt allow then carer assistance. (When I have her instructions I'll add more specifics about exercises).👍🏻
We practice the excercises....me on the bed NIV on.....Physio kneeling next to the bed daughter taking notes....get the picture?
Ok so she's gone through the necessary but added would I mind if she just took my vitals before she goes...blood pressure...temperature.... blood oxygen levels. She notes my breathing is looking laboured.
This was where the fun began....BP is very high....she checks x3....according to her chart she has to inform my GP as coupled with breathlessness I'm high risk. I said fine. Funnily enough at this time I'm feeling somewhat amused as my dread of dying with MND might be trumped with a massive heart attack....sorry just saw the funny side of it.
Anyway she speaks to GP comes back to me and says he has given two plans
1. Admit me now to hospital
2. He will visit and prescribe antibiotics
My reply (2 thumbs down gesture) no to hospital...definately! 2nd point antibiotics for what?
GP says he wants to come & visit anyway...well in my area a GP home visit is a rare thing...so I agree.
Physio leaves....worried but happy knowing GP is coming. Daughter keeps looking at me with dread....poor girl.
So true to his word GP arrives. Listens to my chest....clear. Retake blood oxygen 97 so good. BP still elevated but improving. He feels that monitoring BP would be useful.....I have a machine so agreed I'll keep him informed.ok
He says he's glad he came and will visit from time to time.👍🏻(ten out of ten for GP)
I slept well & today BP still slightly elevated....I'm ok. I've a feeling I may need some antihypertensive meds....we'll see. Anyway of course as well as MND we'll always have other health issues too.
Good news is community & hospital respiratory teams working more closely going forward.
🙏😇
Reading posts in the forum I figured I might need a cough assist machine....saline nebuliser....medication to thin secretions or all the above.
I mentioned my thoughts to the Neuro Rehab Community Team & they advised they dont issue respiratory equipment (that's the hospital respiratory team) however they do assess/measure cough strength. So yesterday a physio (new person to me)from their team came about 3ish. My daughter was here to act as my voice & I asked her to write notes (I know...you can take the girl out of social work blah blah)
I mention the time only because fatigue is usually greatest for me p.m....add to that no sleep....gives you a picture of how I was feeling.
She asked me a lot about respiratory support I've had so far....lots of talking for me..with my barely decipherable voice (which my daughter still mainly understands)
So then for the 1st time since diagnosis someone measured my cough strength!!! Using a hand held gadget with a mask at one end that I coughed into. I say cough my pathetic attempt (x3) could barely be called a cough and only registered 100. Which is the lowest score. Physio advised this flags up a need for a cough assist...she will liaise with hospital respiratory team.👍🏻
Next she says she's brought a rollator for me...produces from her car....not what I was expecting...I'd call it a walking frame with 2 wheels. By now my fatigue feels overwhelming...& I tell her really I need a rest on my bed with NIV.
She suggests walk with frame to my bedroom...try it out. Then I can use NIV. Off I go....gasping like a fish out of water. Make it to my bed and the refuge of NIV.
Physio suggests various exercises that can support/aid coughing using the NIV machine...wow who knew....so a big tick for my learning. Three exercises including breath stacking using NIV...ending on a cough. For this you do need to be able to remove the NIV mask so if hand function doesnt allow then carer assistance. (When I have her instructions I'll add more specifics about exercises).👍🏻
We practice the excercises....me on the bed NIV on.....Physio kneeling next to the bed daughter taking notes....get the picture?
Ok so she's gone through the necessary but added would I mind if she just took my vitals before she goes...blood pressure...temperature.... blood oxygen levels. She notes my breathing is looking laboured.
This was where the fun began....BP is very high....she checks x3....according to her chart she has to inform my GP as coupled with breathlessness I'm high risk. I said fine. Funnily enough at this time I'm feeling somewhat amused as my dread of dying with MND might be trumped with a massive heart attack....sorry just saw the funny side of it.
Anyway she speaks to GP comes back to me and says he has given two plans
1. Admit me now to hospital
2. He will visit and prescribe antibiotics
My reply (2 thumbs down gesture) no to hospital...definately! 2nd point antibiotics for what?
GP says he wants to come & visit anyway...well in my area a GP home visit is a rare thing...so I agree.
Physio leaves....worried but happy knowing GP is coming. Daughter keeps looking at me with dread....poor girl.
So true to his word GP arrives. Listens to my chest....clear. Retake blood oxygen 97 so good. BP still elevated but improving. He feels that monitoring BP would be useful.....I have a machine so agreed I'll keep him informed.ok
He says he's glad he came and will visit from time to time.👍🏻(ten out of ten for GP)
I slept well & today BP still slightly elevated....I'm ok. I've a feeling I may need some antihypertensive meds....we'll see. Anyway of course as well as MND we'll always have other health issues too.
Good news is community & hospital respiratory teams working more closely going forward.
🙏😇
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