olly
Extremely helpful member
- Joined
- Jan 10, 2008
- Messages
- 2,743
- Reason
- PALS
- Diagnosis
- 11/2007
- Country
- uk
- State
- uk
- City
- uk
hello everyone,thankyou so much for all your messages they mean alot to me.
i came home on wednesday but still very tired and wanting to sleep alot.
3wks ago i got flu again,4th time in 18mths the last time was only over christmas and newyear.
i was ok on the sunday and woke up monday morning feeling rough and grouchy,in the afternoon i went for my lie down and when i woke i could not move and felt i was dying.
i just slept most of the time so was not eating at all and barely drinking so i wnt down hill.
i have not bothered in the past with the flu vacination but have to have it now.
i am still quite ill,very tired and weak............i am alot weaker now than before the flu and feel in my body that i am not going to get that strength back.
they gave me some protien and vitamin drinks to build me up and i am going to get some complan as well.
i have lost so much weight over the past year or so but they just put it down to my digestive problems and the pls.
i have seen a dietician and got some advice on what to eat to help with my weight ,a healthy diet with plenty of protien,carbohydrates and oily fish ect.
i do have a gluten intolorance so i have been advised to go on a gluten free diet to see if it helps with everything.
i got weighed and measured...........at 5ft 11 i should weigh around 12st but i only weigh 10st.........a few measurements were my waist is 29ins,my upper arms at the fatest point are 9-10ins.
in may it will be 12yrs since the start of this desease,may 99 was when the spasms started but i had obvious balance and clumsy problems before this that others noticed.
i think basically after 12yrs pls is taking its toll on my body and general health.
we,me especially can become complacent about our slow progressing disability.........we think we are doing ok and can still manage.
i thought i was doing great but reality paints a different picture.
its now a struggle to keep up to basic day to day things and i have had to admit i need more help.
also cognitive problems have added to that over the past few years.
while i was ill my stutter came back,this started a few years ago when the cognitive problems started to get worse.........not all the time just occasionally.
i was told the stutter is connected to the cognitive problems............frontal lobe.
i do sometimes think i am losing the plot but if i am developing ftd i would rather not know.
so there it is...........my body and mind are buggered.
i have been very depressed about it all but still believe i am very fortunate when considering what pals and others have to deal with.
i hope you all are as well as you can be and i send you all my love.
will have to play catch up on all the posts.
take care.
i came home on wednesday but still very tired and wanting to sleep alot.
3wks ago i got flu again,4th time in 18mths the last time was only over christmas and newyear.
i was ok on the sunday and woke up monday morning feeling rough and grouchy,in the afternoon i went for my lie down and when i woke i could not move and felt i was dying.
i just slept most of the time so was not eating at all and barely drinking so i wnt down hill.
i have not bothered in the past with the flu vacination but have to have it now.
i am still quite ill,very tired and weak............i am alot weaker now than before the flu and feel in my body that i am not going to get that strength back.
they gave me some protien and vitamin drinks to build me up and i am going to get some complan as well.
i have lost so much weight over the past year or so but they just put it down to my digestive problems and the pls.
i have seen a dietician and got some advice on what to eat to help with my weight ,a healthy diet with plenty of protien,carbohydrates and oily fish ect.
i do have a gluten intolorance so i have been advised to go on a gluten free diet to see if it helps with everything.
i got weighed and measured...........at 5ft 11 i should weigh around 12st but i only weigh 10st.........a few measurements were my waist is 29ins,my upper arms at the fatest point are 9-10ins.
in may it will be 12yrs since the start of this desease,may 99 was when the spasms started but i had obvious balance and clumsy problems before this that others noticed.
i think basically after 12yrs pls is taking its toll on my body and general health.
we,me especially can become complacent about our slow progressing disability.........we think we are doing ok and can still manage.
i thought i was doing great but reality paints a different picture.
its now a struggle to keep up to basic day to day things and i have had to admit i need more help.
also cognitive problems have added to that over the past few years.
while i was ill my stutter came back,this started a few years ago when the cognitive problems started to get worse.........not all the time just occasionally.
i was told the stutter is connected to the cognitive problems............frontal lobe.
i do sometimes think i am losing the plot but if i am developing ftd i would rather not know.
so there it is...........my body and mind are buggered.
i have been very depressed about it all but still believe i am very fortunate when considering what pals and others have to deal with.
i hope you all are as well as you can be and i send you all my love.
will have to play catch up on all the posts.
take care.
