Hello I’m Douglas

[Dis1960]

Hello I hope someone can explain this

On Tuesday 8th January 2019 we traipsed along to Salford Royal to pickup the equipment for an overnight breathing test to be done at home ( the only instruction was to bring a tight t-shirt that would be used to sleep in )

When we got there my neck was measured; questioned about my sleep pattern and we were presented with a wrist-watch style monitor wired to a pulse probe for the forefinger, a fingersock, some tape and questionnaire to be filled in the morning. The whole “consultation” lasted less than 10 minutes

After that the monitor and stuff had to be returned to Salford Royal and just dropped off in the morning

What gives and why could this not be done at the local hospital or GP ( rather than wasting 2 days of my wife’s time and £40+ in taxis)

[Kayleigh]

Hi Douglas,

Perhaps only staff at certain hospitals have the 'special authorisation' or the 'specialist qualifications' required to hand-over and receive such 'specialist equipment' to/from patients? LOL

Not always convenient for us patients - but I suppose that there must be some sort of 'NHS logic' behind it all?

Even if the readings from the equipment have to be analysed at Salford, I agree with you that it is a great shame that this couldn't have been done via your GP, or local hospital!

Best wishes,
Kayleigh

[Guest]

Hello shrew, 17/7 is a day we will not forget, same day as my wife's diagnosis, stay strong for yourself as well as your husband, always someone on here to chat to or what ever.
dave.

[Terry]

Hi Douglas;

I go some 60 miles for mine but I probably could have them done 10 miles away.

They deliver the overnight monitor 3 days before My appointment. I complete it on one of the 3 nights and complete the form about how i thought i slept.

we drive there and hand in the form and monitor. they do a co2 arterial blood test, various breathing tests and weigh me.

This is normally done quite early on to get a base line for then on you and I hope that you had all these tests do.

On the plus side they measured your neck, hopefully not for a rope. LOL

Love Terry
this is then followed by talking to a breathing specialist about everything.

[Guest]

Hi dis1960, my wife had this done at home, they sent ours through the post, we had to use the same package to send it back, had to registered post, cost nearly a fiver, ours was done like this to save them time at our next app.
dave.

[Dis1960]

This may seem an obvious problem but I have the clinic appointment at Salford Royal on Wednesday.
Tuesday & Wednesday are supposed to be wintery with rain, sleet and subzero temperatures.
I’m minded to postpone the appointment as I don’t feel safe walking with the stick normally let alone icy conditions.

What are the various mobility aids like to use in icy weather?

[Barry52]

Hi Dis1960,

For all of us who are ambulant , whatever aid you use will not be good in icy conditions and the risk of falling should be avoided. Having said that your appointment may be important and you may wait ages for a new one. Check if you can get Hospital transport which will take you to the door otherwise book a taxi.

Best wishes ,
Barry

[Dis1960]

To get to the taxi is a minimum of 15 feet of uneven paving to cross ( maybe a lot more depending on where the taxi can park ) No idea what Hospital Transport could do differently

[Lynne K]

I know how you are thinking and feeling Dis 1960. About a year ago I had an appointment with my speach therapist at Radcliffe Medical Centre. The public car park is around a corner from the centre. The 3 or 4 disabled spaces were occupied so we had to park further up the hill. The ground was icy. I knew what to expect, was very nervous. I linked my husbands arm with my left arm and used my walking pole in my right hand. After a couple of tentetive steps the pole skidded and I went splat. I was soaking wet, bruised and wondered how I was going to get up. A kind, disabled man got out of his car that was parked on one of the disabled spaces. He too was using a stick. He and my husband got me up. Then I set off again. I would never since venture out when there's ice or snow on the ground. About Salford Royal. There is a drop off point close to the entrance. But there'd likely be a few yards of ice to cross if there is ice elsewhere. I don't know if this area gets salted. One would expect so but one cannot rely on it. I think that the safest thing to do is call your specialist nurse or somebody else in the MND clinic and ask for advice. Good luck. Lynne

[Deb]

Hi Douglas, Do take care !

I think we all feel especially vulnerable when it is icy or cold. I hate the wind when I am transferring to the car from my wheelchair as I feel I am going to blow over! It might be worth asking for a wheelchair from the hospital and they might get someone to push or help you. I started using a wheelchair for hospital visits before I was diagnosed because of the long corridors and they were always happy to help.

I know it's easier said than done but do take care not to fall.... like most of us ,I speak from experience of falls and they happen so quickly.

Good Luck with your hospital visit.
Love Debbie

[Music man's wife]

Hello Douglas, MM had an appointment last week with his neurologist. He hadn't been too well so I phoned her secretary and got a phone appointment. Would that work?

[Terry]

Hi Dis;

Most hospitals have wheelchairs if you've got a good pusher. It is hard to fall out of a wheelchair if you can get into it safely.

Love Terry

[Dis1960]

Thanks all, my wife rang them and explained the problem and they are rearranging it hopefully when it is not sub-zero.

Appointment rearranged for 27th February 2019 at 1530

And the breathing test is now arranged for 27th February 2019 at 1515

[Dis1960]

Most hospitals have wheelchairs if you've got a good pusher.

Thanks Terry, Salford Royal have a limited number of Porters Chair available and unless you’re a 0900 appointment they are invisible

[Terry]

Might be worth getting your OT to source a wheelchair for you Dis;

THey can be very handy if the weather is not nice or you have to walk a long way. Also a rollator can be handy as most have a seat if you get tired and are handy for carrying things, even a pint of beer.

Love Terry