thank you neenag i shall speak to the doctor about that medication. and its so nice to hear you are having a good day thank you
chestnut I was on 400mg a day the max dose prescribed but I know people who are on 1800mg and are abusing it.They became addicted without realising and kept increasing slowly.
ali j Id love to meet up with you but I bet we live miles apart. I think we could be good friends. You are so brave and honest about your condition. What is wrong with your mum and what happened to your friend xxx
neenag xxx
ali j Id love to meet up with you but I bet we live miles apart. I think we could be good friends. You are so brave and honest about your condition. What is wrong with your mum and what happened to your friend xxx
neenag xxx
oh by the way ...am doin me ouse werk 
xxx
xxx
neenag,im far from brave in my eyes,if i dont smile i cry,emoutions can be all over the place at mo,but people like yourself with a bit of giggle in you makes me smile and keep me goin then,then i can push meself along to try and help others to.ive had a lot of hurt and pain in my past,and it dont seem to dry up,but hey i see it that i draw the short straw,and im not goin to bed with out the neenag with you
by the way i live in shropshire,were they make mullier riceand have plenty of farms,pooo yeeeewell im off to bed neenag,i got speech therapist and dietian tomorrow at 10,so early start.by time i had show meds etc it takes ages dont it now to get ready,anyway i will be inspectin ur ouse werkfirst thing,nite everyone
neenag with youby the way i live in shropshire,were they make mullier riceand have plenty of farms,pooo yeeeewell im off to bed neenag,i got speech therapist and dietian tomorrow at 10,so early start.by time i had show meds etc it takes ages dont it now to get ready,anyway i will be inspectin ur ouse werkfirst thing,nite everyone
night night house work done but bet i'll suffer tomorrow 
neenag xxx
neenag xxx
hi the doctor has told me to take my requip at night and given me 100mg of amantadine to take it in the mornings.hopefully this should lessen my fatigue.
watch this space
love neenag
watch this space
love neenag
Well! it worked!for now anyway.I take my ropinerol at night and 100mg of amantadine in the morning..if I could just get rid of a bit of pain life might be enjoyable again
I can now keep awake during a conversation which is good because people were getting a complex they thought i found them boring hee! hee!
love neenag xxx
if I could just get rid of a bit of pain life might be enjoyable againI can now keep awake during a conversation which is good because people were getting a complex they thought i found them boring hee! hee!love neenag xxx
My husband suffers with very painful knees . He takes paracetamol as directed , they do not give any relief . Unfortunately he is on Warfarin medication and is unable to take anti-inflamatories. He tried Co Codamol but they made him confused .
Hi Neenag and everyone else. Fatigue, pain ,confusion, cramps, falls, insomnia - living is so so difficult at the moment.I have just returned from after about 10 days. I ended up there because I din`t know what was real and what wasn`t. I take stalevo 100mg levodopa, 25mg carbicopa,and 200mg entacapone. along with 8mg rotigitine patches ar night. The only pain killers I have are co-codomol and I take a sleeping tablet - zopiclone 7.5ng. whilst in hospiyal I was put on a drip 3 times a day containing various vitamins and minerals, mainly thiamine and strong vitamin B6. I responded well to this treatment , so now I will be taking them daily in tablet form. I go for another c.t. scan on Wednesday. I think I need more levadopa because my tremor is much much worse - the falls I`ve had recently have been pretty bad - cracked ribs, fractured scull and numerous cuts and bruises. I live alone - my husband dyed of leukaemia some 5 years ago just a year after I was diagnosed. I`ls been tough to say the least. Sometimes I feel that I cannot carry on much longer - I also take anti depressants . I have been reading about d.b.t. and wander if I would be suitable for this op. I really try to live as normal a life as possible e.g. exercise wise and diet etc., but it is so very very difficult.I notice in a previous post that you take codramol 10/ 500 which is good for your pain and I`me thinking about asking my consultant if maybe I could try them. The cramp in my feet makes them go all sort of claw like and the last time I saw him he prescribed clanazipan - they do nothing to help - sorry to go on and I wish you and everyone all the best. Love Speedy. Any tips would be appreciated.
wow speedy! lot of medication going on there. how long you been dx and,if you dont mind me asking,how old are you? I am 52 and dx in 2010 but symptoms started in 2004.sorry to hear about your falls. do you have a carer coming in to support you and do you have a social worker. also have you seen an ot about adaptations to your house to help you be more independent, and do you have assisted technology in your home? I ask these obvious questions because you would be surprised how many people just carry on .
love neenag xxx
love neenag xxx
hi johnnie... love neenag xxx
Hi Speedy,
If the problem with your feet is cramp (not distonia which I believe is somewhat different), you might try the following exercise, i.e. rolling a tennis ball or similar back and forward under your foot preferably whilst standing so that you get the full pressure of your weight. This enables you to flex your toes as is often recommended without - hopefully - provoking the very cramp you are trying to remedy. I found it banished the foot cramps after a few days, although it was three years ago when I was first dx. and even now I am lucky enough not to suffer much in the way of direct Parkie symptoms, although my hip problems are no doubt indirectly connected with muscle stiffness.
You seem to be a quite a cocktail of drugs. I'm wondering without having any medical trtaining whether a thorough review of your drugs might be helpful . Apologies if this has already been done.
Also I would have thought the input of a physiotherapist would be helpful. Have you had this via your GP or a Parkinsons nurse.
Best Wishes,
If the problem with your feet is cramp (not distonia which I believe is somewhat different), you might try the following exercise, i.e. rolling a tennis ball or similar back and forward under your foot preferably whilst standing so that you get the full pressure of your weight. This enables you to flex your toes as is often recommended without - hopefully - provoking the very cramp you are trying to remedy. I found it banished the foot cramps after a few days, although it was three years ago when I was first dx. and even now I am lucky enough not to suffer much in the way of direct Parkie symptoms, although my hip problems are no doubt indirectly connected with muscle stiffness.
You seem to be a quite a cocktail of drugs. I'm wondering without having any medical trtaining whether a thorough review of your drugs might be helpful . Apologies if this has already been done.
Also I would have thought the input of a physiotherapist would be helpful. Have you had this via your GP or a Parkinsons nurse.
Best Wishes,
High . Eileen Patricia . You mentioned Physio . My husband was having great difficulty so I got intouch with Social services and ask for an assessment . The outcome was . They supplied him with aids for the toiletr and bathroom . They called it long term loan . They also sent out a physio and her helper to assess him they were part of the REABLEMENT TEAM . Ithink it is generally used for people who might have been in hospital or had a stroke .
They were great gave him one day for 6 weeks treatment and at the end granted another 2 for accupuncture . Now in his case we didnt think it changed anything but coudnt fault them for trying their best .
We have installed a stairlift the best money we have spent . Have been waiting for a profile bed for a few months but it looks like we might get one soon . thiswas applied for through the district nurse . There is help out there but nobody shows you the way round it all . We fumble around .
They were great gave him one day for 6 weeks treatment and at the end granted another 2 for accupuncture . Now in his case we didnt think it changed anything but coudnt fault them for trying their best .
We have installed a stairlift the best money we have spent . Have been waiting for a profile bed for a few months but it looks like we might get one soon . thiswas applied for through the district nurse . There is help out there but nobody shows you the way round it all . We fumble around .
yes my grandad is constantly sleeping, the parkinsons makes it worse as when he wakes up he is confused and cant remember where he is at first!
Hi Speedy and everyone on this thread
I wonder if you have a helpful consultant and if you could discuss your medication with him.
Eileen Patricia thanks I will exercise my toes and see if it helps as I am getting some toe curling when medication wears off,
I wonder if you have a helpful consultant and if you could discuss your medication with him.
Eileen Patricia thanks I will exercise my toes and see if it helps as I am getting some toe curling when medication wears off,
Me again Speedy, I wonder if your medication was reviewed in hospital, for info my medication in France is
Madopar 125 3 x day
Sifrol (same as Mirapexin) 1,05 slow release
Azilect (Rasagaline) 1mg
Also when I was very low I bought the cans of build up food from chemist, cant remember the name of them. Better still if GP will prescribe them.
Have you been checked for anaemia? These things may not be relevant its just they helped me, Sorry you and others on this post are having a bad time.
Madopar 125 3 x day
Sifrol (same as Mirapexin) 1,05 slow release
Azilect (Rasagaline) 1mg
Also when I was very low I bought the cans of build up food from chemist, cant remember the name of them. Better still if GP will prescribe them.
Have you been checked for anaemia? These things may not be relevant its just they helped me, Sorry you and others on this post are having a bad time.
Hello Speedy,
In case you and the others on this forum don't know you are all entitled to an assessment from an physio, o/T and social worker, the information support worker from PDUK will also be able to get you help accessing these people, for you speedy and anyone else who falls you can be referred to the falls team which can help some of you.
If you haven't been seen by a social worker then please request it, this also applies to carer's, once this has been done you will be able to work out a plan that can relieve some of the issues, carer's health and well being have to be taken into account. It is always a good idea to be on the lifeline in case you don't know what this is , it is a help button worn around the neck or wrist that connects you to a 24 hour service, I am with the local council but I think BT does the same. you have to name two friends who would be prepared to come and check you are alright, if not then they will send someone out to check. This system works very well and anyone living on their own should consider this.
My friend that lives on his own has needed to call on them several times in the last six months and they have always been excellent and very caring, he had a small graze on his hip and the local nurse came in everyday to treat it until it was really healed, now the O/T is involved he is getting a lot of support and has agreed to have some carer's come in five morning a week.
In all the years of looking after my husband I was never told I could get these different things to help and when I did ask the social worker said we didn't have enough need????? it was when my doctor got more involved that things changed a little then once the district nurses came in they realised just how much I was doing for him and called in the PCT for an assessment for continuing care, which we got and they have been really supportive and still are even though my husband is now in a home. The reason I say all this is there is lots of help out there but the message is they leave you to push for it which it sometimes hard work when you really don't feel well enough to do it, so get help.
If you get cramp quinine I not sure if that is how you spell it but it helps, I was told to press your finger on the small area between your nose and mouth, it does work. The replacement food is called Ensure Plus or Forty Sip and you can get them on prescription, losing weight is very common in some people with PD.
Sorry it's long winded but I hope it helps.
best wishes
vivian
In case you and the others on this forum don't know you are all entitled to an assessment from an physio, o/T and social worker, the information support worker from PDUK will also be able to get you help accessing these people, for you speedy and anyone else who falls you can be referred to the falls team which can help some of you.
If you haven't been seen by a social worker then please request it, this also applies to carer's, once this has been done you will be able to work out a plan that can relieve some of the issues, carer's health and well being have to be taken into account. It is always a good idea to be on the lifeline in case you don't know what this is , it is a help button worn around the neck or wrist that connects you to a 24 hour service, I am with the local council but I think BT does the same. you have to name two friends who would be prepared to come and check you are alright, if not then they will send someone out to check. This system works very well and anyone living on their own should consider this.
My friend that lives on his own has needed to call on them several times in the last six months and they have always been excellent and very caring, he had a small graze on his hip and the local nurse came in everyday to treat it until it was really healed, now the O/T is involved he is getting a lot of support and has agreed to have some carer's come in five morning a week.
In all the years of looking after my husband I was never told I could get these different things to help and when I did ask the social worker said we didn't have enough need????? it was when my doctor got more involved that things changed a little then once the district nurses came in they realised just how much I was doing for him and called in the PCT for an assessment for continuing care, which we got and they have been really supportive and still are even though my husband is now in a home. The reason I say all this is there is lots of help out there but the message is they leave you to push for it which it sometimes hard work when you really don't feel well enough to do it, so get help.
If you get cramp quinine I not sure if that is how you spell it but it helps, I was told to press your finger on the small area between your nose and mouth, it does work. The replacement food is called Ensure Plus or Forty Sip and you can get them on prescription, losing weight is very common in some people with PD.
Sorry it's long winded but I hope it helps.
best wishes
vivian