Assessment tools for use in clinics.
People with Parkinsons are telling us professionals that they want to chair their own clinics and become the experts as they are the ones living with their condition. In order for them to be able to chair their clinics they need the tools to enable them to do this . With the CPT Neurologists and PDNS we developed a QOL tool that is PWP friendly and easy to use in clinics. When educating PWP post diagnosis there is a glossary used almost impossible to be understood by anyone newly diagnosed. The tool we developed is in a language suitable for both clinicians and the PWP. Over the years i have heard so many PWP complain about their clinic visits being a waste of time as much of what is said is not understood and they often dont get a chance to ask questions. the answer to that is prepare yourself for clinics. Fill in the QOL tool at home and take it with you to clinic. The clinic will be focused and the PWP will take the lead. The tool can be downloaded onto an ipad iphone or email which are all accessible in clinics.
For research purposes tools such as the NMSQ QOL 39 or 8 UPDRS Sleep Scales and Cognition assessment tools are all used in clinics and a nurse new to Parkinsons should be trained up to use assessment tools to get the best out of their clinics.
Clinic Reviews
People with Parkinsons should be encourage to bring their Parkinsons to clinics rather than arriving at clinic expecting the clinician to offer a quick fix. Each person with Parkinsons are individuals and the clinician is only able to become the expert on each individual with information brought in by the PWP .
There are self assessment tools available such as the NMSQ and the QOL tool which encourages the PWP to record their 3 main symptoms which dominates their every day life. This approach to each clinic review alows the clinic to flow and be focused rather than leaving a clinic review thinking it was a waste of time.
Patient empowerement needs to start at diagnosis and the ” expert” can only really be the person living with the condition and those nearest to them. Expecting the clinician to be the expert and for the person living with the condition not to take ownership often leaves the PWP living in ignorance and often alone .
Coming to clinic armed with facts and figures, including on and off times and good and bad times and a history of each day assists the clinicians to assess accuratly each individual and enables them to develop a pathway of care in collaboration of the PWP.
Ever thought of keeping notes on your phone or ipad?
Very few PWP keep reliable diaries simple because they find them tedious, time consuming and it simply reminds them of having Parkinsons every time they write things down. It can become just another task on top of tablet taking and their already precarios onand off periods.
However many people with young onset Parkinsons are arriving in clinic with Ipads and Iphones with notes and lists of their every day life living with Parkinsons.
There are 30 non motor symptoms researched and evaluated on the NMSQ. This is a good guidance to the sleep pattern, Pain, Cognition and many other Non Motor Symptoms which have a huge impact on the PWP life and that of their families.
In the UK its very hit and miss as to how much education and information each PWP receives following diagnosis. If a PWP is under the care of a movement disorder centre they are mostly likely to be empowered and included in research programmes and expert patient programmes.
In other areas very little information and time is given to the PWP . They find themselves medicated and simple left for up to 6 months before they are further reviewed.
Parkinsons Glossary
Parkinsons clinicians and services are run using ” our own language” a glossary of words which is often only understood by the clinicians and researchers and rarely the person living with Parkinsons.
In a clinic enviroment PWP are asked what is your best “On” period and explain your “off” period.
Do you ever “Freeze?”
Akinetic rigid? Dystonia? Cognition?
These words mean very little to the people living with the condition . The glossary is vast and needs to be learnt by the PWP but this cant be done unless they are made aware that it exists. The PWP cant become the expert unless they are informed or educated as to what is out there for them and where to find the information.
When I teach either a new PWP or a new professional about Parkinsons i keep it simple:
Your brain is your car engine which runs the body
The petrol in the tank is your dopamine which runs every organin the body
Keeping it simple makes it all more understandable. Off means you cant move and ON means when you cant move. Dystonia is muscle cramping which can affect a toe to the whole body. Dyskenesia is too much movement and bradykenesia is slow movement. This is unique to Parkinsons and needs to be part of the educations which should start at diagnosis.
Non motor symptoms
Many PWP remain unaware many years after their diagnosis that Parkinsons is not a condition that just affects the brain. They are surprised when they find out that the bowels bladder heart vision are all connected to Parkinsons. I have listed below some of the 30 symptoms related to Parkinsons and can be experienced at various times during the process of the condition.
swallow
sleep
pain
bowels
bladder
memory
falls
pain
drooling off saliva
smell
weight
loss of interest
feeling sad low or blue
sex life
dizziness
falling
day time sleepiness
sleep problems at night
vivid dreams
double vision
excessive sweating
Restless legs