Hubby walks four hours has his lunch then walks for another 4/5 hours until he has his pump fitted has anyone any idea how I can help him rest. He has no medication for pd until pump is fitted he’s so done in thanks for reading Margaret
Hi @arnold77,
I’m sorry to hear that your husband has been having trouble resting. It’s not uncommon for people with Parkinson’s to experience restlessness. We have a lot of information on our website with some useful tips on how to help with this which you can find here, https://www.parkinsons.org.uk/information-and-support/sleep.
You might also find it helpful to contact our helpline and speak to one of our advisers about this on 0808 800 0303 for information and support.
I hope you find this useful.
Best wishes,
Reah
Why is he not on oral meds I had this problem allsfnighter wandering on holiday n it’s horrible pump will take a while to work I hope he finds some peace it will pass over eventually get a private consultation it might help
Sounds like he’s doing excellent to me it’s exactly the sort of thing you need to do if you want to stay fit through Parkinson’s walking is so beneficial so he’s you should be very proud of him for doing that but if he’s not on any medication now then there’s no way he should be going on the pump as a first step app
The first thing I thought of in relation to all that walking - in the day - was Akathisia but there is also something called “walkabout”. Another condition, Restless leg, usually is more of a problem at night but levodopa etc can make it worse so that it spreads to the day. If he’s not taking any drugs at present look back & try & figure out a timeline when this started getting worse in relation to any changes/increases in medication & discuss with specialist. Read around a bit & see if you can find a description that fits his picture. There’s sometimes quite a bit of overlap so the distinguishing details can be important.
A Rating Scale for Drug-Induced Akathisia THOMAS R. E. BARNES British Journal of Psychiatry 154:672-676, 1989.
…awareness of an intense compulsion to move most of the time and/or reports a strong desire to walk or pace most of the time
Chapter 5 Differential diagnosis of restless leg syndrome K.R.Chaudhuri, D.Rye, and S Muzerengi (Restless Legs Syndrome ed. K. R.Chaudhuri, D. Rye & L.Ferini-Strambi OUP 2009
p.2014 Although akathisia and RLS are both associated with motor restlessness, in RLS the urge to move is present at rest or during sleep whereas in akathisia the restlessness is present all the time and there are usually no sensory complaints
Affected individuals often describe an unpleasant sensation of inner restlessness, which leads to a compulsion to move, the patient cannot remain seated or motionless, and this can lead to severe anxiety.
Stereotypic movements, such as tongue protrusion, facial dyskinesias, when drugs are implicated, are often seen.
Akathisia is a drug-induced adverse effect and therefore it is treated by gradually decreasing the dose of the offending agent and thus restoring dopaminergic function…Furthermore akathisia can be precipitated by dopaminergic drugs such as levodopa in dopamine deficiency disorders such as Parkinson’s disease.
https://rxisk.org/akathisia/#:~:text=Akathisia%20is%20an%20emotional%20state,of%20behavior%20–%20See%20Left%20Hanging.
Akathisia is an emotional state caused by over 100 different drugs…It can range from a constant and disturbing mental unease through to an intense emotional turmoil – and mental restlessness. This can be accompanied by physical discomfort, an inability to remain still, or an obvious motor restlessness or fidgetiness…Symptoms of akathisia can include: restlessness…difficulty sitting still; feeling the need to keep moving eg. pacing back and forth
Hedonistic homeostatic dysregulation in patients with Parkinson’s disease on dopamine replacement therapies G Giovannoni, J O’Sullivan, K Turner, A Manson, and A Lees J Neurol Neurosurg Psychiatry. 2000 Apr; 68(4): 423–428.
WALKABOUT : During the on or high phase these patients become restless and develop akathisia with an urge to walk. They walk great distances, often wandering far from home while on. These walkabouts tend to be aimless, devoid of specific purpose, and associated with abnormalities in time perception—that is, they are often unaware of how long they have been walking for.
Validation of the Questionnaire for Impulsive-Compulsive Disorders in Parkinson’s Disease (QUIP) D.Weintraub, S.Stewart, J.A.Shea, K.E.Lyons, R.Pahwa, E.D.Driver-Dunckley, C.H.Adler, M.N.Potenza, J.Miyasaki, A.D.Siderowf, J.E.Duda, H.I. Hurtig, A. Colcher, S.S. Horn, M.B. Stern, and V.Voon, Mov Disord. 2009 Jul 30; 24(10): 1461–1467.
The original criteria for walkabout were modified to exclude akathisia in order to capture purposeless wandering rather than a physical sensation of restlessness.
B. OTHER BEHAVIORS 1. Do [Did] you or others think that you spend [spent] too much time….
C. Walking or driving with no intended goal or specific purpose? __Yes __No
Thinking about advanced PARKINSON’S PDUK Sept. 2018
Side effects of Parkinson’s medication: the non-movement symptoms you may experience from ‘wearing off’ include… a feeling of restlessness and a need to keep moving.
CARING for your patient with Parkinson’s Information for ward staff PDUK 2019
p.39 People with dyskinesia use up vast amounts of energy and calories because of their constant movement… If a person is dyskinetic they may find it difficult to keep still and may have the urge to keep walking around the ward area. Their restlessness may be due to too much medication.
Hi please contact your Parkinson’s nurse or neurologist. It sounds like you need to increase your dosage and possibly introduce pramipexole (dopermine agonist). You and your family should be aware of possible compulsive behaviours with agonists.
Don’t suffer if you don’t need to. I have awful symptoms when my meds are not working and I struggle with seeing a future for myself. Hope for a treatment keeps me going.