THE BLOG

Home is Best

02/04/2015 16:28 | Updated 01 June 2015

A recent Press Release from the EPDA (European Parkinson's Disease Association) revealed findings from a study which was conducted over a four year period in England, looking at patients who were hospitalised that suffered from Parkinson's compared to all other causes. The main goal of this study was to emphasise how crucial it is for Parkinson's patients to receive the right treatment. The most common reasons for hospitalisation were due to: pneumonia, physical deterioration, urinary tract infection and hip fractures. Statistics showed a far higher percentage of Parkinson's patients in particular were admitted for these reasons than other patients. The mortality rate was also found higher among Parkinson's patients than any other group.

It is particularly crucial to have an advocate with you when being hospitalised, whether it be a spouse, family member or a good friend. I've heard time and again about fellow Parkinson's sufferers experiencing devastating consequences from being hospitalised. From personal experience, I understand the severity and possible ramifications all too well after being hospitalised some months ago. Hospitalisation is something I try to avoid at all costs, but occasionally there is no choice.

I've found most hospital staff are unfamiliar with the countless symptoms, medications and special needs of a Parkinson's patient. In all fairness, it would be unreasonable to expect all staff to be experts and comprehend fully the many variables involved with Parkinson's disease. No disrespect meant to any hospital or their staff, but according to data collected, it appears after a hospital stay, many a Parkinson's patient can return home in a worse state than when they were first admitted, or never return home at all. I don't mean to paint a dark picture, but these are the plain facts. It needs to be understood, Parkinson's disease by its very nature, is likely to be exacerbated from anxiety due to being in an emergency room and hospitalisation.

Taking Parkinson's medication on time is vital, and deciding not to rely on anyone but myself, I took my own pills with me into hospital. It was a good job I did, for the nurse with the medicine trolley only turned up at 08:30 which would have made my first pill of the day 2 ½ hours late, since I normally take it at 06:00.

I was put in the ward opposite the nurses station, a central hubbub of any department and felt comfortable in the knowledge that they were keeping a close eye on my situation. I had to wear a plastic wristband indicating I'm prone to falling, and was told not to get out of bed or wander around. Staying in bed during my hospital stay and unable to move and walk, although for my own safety, was in fact detrimental to my condition, and it was amazing how quickly muscles become weak and waste away when bedbound. The all too common phrase comes to mind: "use it or lose it". I have to give the hospital ten out of ten for hygiene though, as I've never seen floors as spotlessly clean as on that ward. Just when the floors were looking dry, than I would see them putting up the "wet floor" sign again. With slippery floors, and a reputation for falling, can you blame them for keeping me in bed?

When the doctors made their rounds, I pleaded to send me home. I explained that despite their fine reputation, great facilities and caring staff, I felt I would do best in my own home. After explaining all my concerns regarding hospitalisation and Parkinson's, they understood and agreed that I could be released.

This is why information, education and further awareness about Parkinson's disease is paramount. Not only should we as a community understand this disease better, but those in the medical field need to, at the very least, familiarise themselves with the complicated needs of a person living with Parkinson's. Parkinson's patients are often admitted into hospital all too quickly, whereas the opposite should really apply. Only life threatening situations or medical conditions that can solely be dealt with in a hospital should be admitted. If treatment can be received at a day clinic, or better still at home - this is the best scenario. Put to the test - home is best!
http://www.elainebenton.net/