just wondered

[clare t]

i would like to say i have found so much info on this forum it has been sad and postive but what i cant understnd is why my uncle doesnt know anything about als even though hes had it nearly 5months knowing and a year not knowing the nurse comes out and he is coping very well but y doesnt he know nothing about bipap, peg all the good thing that can help living with als what i was anoyed with he hasnt even been offered swine flu jab or the pneumonia jab when loads of people have had it with als i wondered if there more help in usa then here in the uk. i also wondered if they havent mention this to my uncle cus he hasnt got to that stage yet

 

[indigosd]

hmmm...maybe he doesn't want to know? I know that the bulk of what we know is because I am very proactive and research. Who is his caregiver? It seems that there are many resources available in England from what I have read on the forum.

 

[clare t]

thanks indigosd should he been offered the jabs then

 

[clare t]

he hasnt got a caregiver as such his wife takes care of him he still go out for a pint but sometime with a struggle

 

[Danijela]

Clare,

he is considered a risk category. He should ask for a jab at his GP practice. His GP should have a record of his diagnosis of MND. We both had our vaccines, but we had to ring our GP and ask.

There is a lot of help available in the UK, through local MND Association Branches, association visitors, MNDA (motor neuron disease association) online and printed resources, OT, Physio, MND clinics, social workers etc. If your uncle does not use a computer he can speak to someone over the phone. MND Connect provide telephone service and will send out written resources on the topics he may be interested in at this time. Please see MNDA website, just do a search for it : MNDA UK

If you need more specific information you can contact me too, via this site.

All the best, Dani

 

[indigosd]

Good info Dani! YES, he and his family need the "jab"! Our experience on this journey is that you have to ask for what you need-no spoon feeding here in South Dakota!

 

[clare t]

thanks dani and indigosd ur right i will ask him to ask the doctors for the jab