'You've got Parkinsons Disease. Take these tablets and I will see you in 6 months time' - feeling numb, I sat with my husband in the consulting room as these words just flowed from the consultants mouth. This was the first day of my journey that I still live today and no doubt for the void of the future.
Explaining to people about Parkinsons is really difficult. The general comment is 'I thought only elderly people get Parkinsons?'....or....'that's only a condition that makes you shake'. If only people really understood what Living with Parkinsons was about and how it has the devastating affect on your family around you.
Here is just some of the other symptoms people are not aware of:
- Lack of movement
- Episodes of 'freezing'
- Unable to swallow food
- Loss of speech
- Can appear to look drunk
- Lack of confidence
- Sleep deprivation
To make matters worse, the medication prescribed can cause side affects that are worse than the symptoms listed above. Sometimes it better to put up with the symptoms then actually suffering from the affects of the medication. Depression, anxiety, addiction, anger are just some of the uncontrollable things that occur. This is bad enough for me to deal with, but for my husband and two children to watch their mum/wife go through is sole destroying.
A good source of conservative treatment is keeping active. Fitness and mind stimulating activates can really help release dopamine in the brain. My consultant has told me about Sail4Parkinsons. This is a dedicated project that is delivered to patients in Italy that has helped people tremendously. She has suggested that I would benefit from this project, and I am greatful that I have been put forward by her for me and Jason to attend.
The primary objective of this project is to combine pharmacological treatment with a series of physical, cognitive and intellectual activities. An integral part of the project is Sardinia’s spectacular marine environment and beautiful scenery along the Sinis – Cugliari – Montiferru coastline. Through this we have created a practical and valuable experience to help improve the psychophysical aspects of the condition. The project includes theatrical, musical, psychotherapy and cooking/nutritional workshops.
The project as a whole has produced the following results:
1 – Everyone was able to understand the importance of leading an active and well-organised life with commitments and goals. During the project, the difficulties that usually exist tend to disappear as well as motor fluctuations, dyskinesias and other daily struggles. Similarly, it soon became apparent that the habitual dependence on medications can be reduced when commitments and activities are incorporated to enrich everyday life.
2 – Everyone reported an almost total disappearance of anxiety and depressive symptoms, sleep disturbances and the frustrating lack of energy that generally characterized their lives until attending the project.
3 – Within a few days, everyone starts to develop an improved self-esteem, a desire to overcome
Attending this project is not free, and unfortunately there are no funds on the NHS that can contribute towards the cost. Jason and I would be eternally grateful for any funding that will help pay towards the cost for us to attend this project.
Your help would be much appreciated.
Kirstie & Jason