Is this normal?

[Bexxy]

Yes we do thanks and use it regularly. Definitely one of the more useful items.

[Bexxy]

On the topic of suction machines, how often does anyone change all the tubing? I have been doing it every time the bag is full so I change everything at the same time but that can be quite frequently as the bag gets filled up with water when I clean the machine. Not sure if I should be doing it more or less and SLT just said ‘whatever you think’.

[matthew55]

I have been using mine non stop it seems for a while and using the same tube. I have a spare but until it breaks or something I won't bother changing it. I have changed the probe cos it looked odd. 😁x

[Madge]

Hi Debbie

like you my taste buds have definitely changed and I was always a good eater and ate most things and now struggle to find something to whet my appetite. Again I like crisps and chips and am waiting for my McDonalds to arrive x I do take Riluzole and was told this can affect your taste. my consultant has not come across people with loss of taste !! I feel I eat what I am given and don’t have the desires for my favourites 😫 any more. Such a shame.

[LesleyB]

I started lose my appetite before I was diagnosed.So before I started taking Riluzole.,I always looked forward to my next meal. But of course I am not rushing around working , walking etc any more. So put it down to that. Hardly ever have a glass of wine anymore.Tastes funny! Taken a liking for M and S trifles. Vanilla slices too. I am suffering from bad headaches most days . Is this a side effect of the drug?

[Ellie]

LesleyB When do the headaches come on?

[matthew55]

If it's like mine then NIV may be the answer?😄x