Hello
I am scared and confused
The Neurologist thinks I have diabetic neuropathy. I had a EMG in August and the Clinical Neurophysiologist thought it was MND but wanted to wait three
months and repeat the test. Which was done Thursday by a different Clinical Neurophysiologist who said unfortunately it was MND. He typed the conclusion of his report for us to take with us when we see the Neurologist on Friday 12th. The conclusion actually stated it was most likely MND. He told us to contact the MND Association and request that the consultant refers me to a specialist MND nurse and starts me on a medication called Riluzole.
Have I been formally diagnosed with MND or do I need confirmation from the Neurologist??
Since July I have deteriorated from walking with a rollator to now being pushed in a wheelchair.I can no longer manage steps so I am unable to get out of the house until we can arrange for a ramp to be installed.Fpr hospital appintments I am lifted out of the house in a wheelchair by the crewThe GPS are not intersted and the Occupational Therapists have offerd tea and sympathy but no practical advice
A friend went to a mobility shop for advice about a ramp and one is being delivered tomorrow and he will install it.
We have some limited savings so independantly bought a stairlift and sit and stand seat riser.The Community Team initially did provide the rollator a wheelchair and other aids such as grab rails and a hospital bed. But help now or advice seems to have stopped.
AT the moment the biggest problem at the moment day to day is the toilet.Sice July I have had incrreasing difficulty getting up from the toliet.My arms and legs have become far weaker. I have gone from a 4 inch riser to a 6 inch riser and now even with my wifes help cannot get up from it, We are now using pads which is very unpleasant for my wife and very difficult for me to go to the toilet.
I have ordered a Solo Toilet Lift which currently will not be in stock until the end of November.
But is this suitable for someone with MND?
What aids or methods or other people used.?
All advice or comments welocome
I have posted this on the connect forum and introduce yourself forum. I apologise if this not the correct protocol
Many thanks
Steve
.
I am scared and confused
The Neurologist thinks I have diabetic neuropathy. I had a EMG in August and the Clinical Neurophysiologist thought it was MND but wanted to wait three
months and repeat the test. Which was done Thursday by a different Clinical Neurophysiologist who said unfortunately it was MND. He typed the conclusion of his report for us to take with us when we see the Neurologist on Friday 12th. The conclusion actually stated it was most likely MND. He told us to contact the MND Association and request that the consultant refers me to a specialist MND nurse and starts me on a medication called Riluzole.
Have I been formally diagnosed with MND or do I need confirmation from the Neurologist??
Since July I have deteriorated from walking with a rollator to now being pushed in a wheelchair.I can no longer manage steps so I am unable to get out of the house until we can arrange for a ramp to be installed.Fpr hospital appintments I am lifted out of the house in a wheelchair by the crewThe GPS are not intersted and the Occupational Therapists have offerd tea and sympathy but no practical advice
A friend went to a mobility shop for advice about a ramp and one is being delivered tomorrow and he will install it.
We have some limited savings so independantly bought a stairlift and sit and stand seat riser.The Community Team initially did provide the rollator a wheelchair and other aids such as grab rails and a hospital bed. But help now or advice seems to have stopped.
AT the moment the biggest problem at the moment day to day is the toilet.Sice July I have had incrreasing difficulty getting up from the toliet.My arms and legs have become far weaker. I have gone from a 4 inch riser to a 6 inch riser and now even with my wifes help cannot get up from it, We are now using pads which is very unpleasant for my wife and very difficult for me to go to the toilet.
I have ordered a Solo Toilet Lift which currently will not be in stock until the end of November.
But is this suitable for someone with MND?
What aids or methods or other people used.?
All advice or comments welocome
I have posted this on the connect forum and introduce yourself forum. I apologise if this not the correct protocol
Many thanks
Steve
.
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