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,

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 .

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,

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.

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