Ms Mary Casserly:

I thank the committee for inviting me to speak as a person living with early onset Parkinson's disease and for the help the committee has given me. I was diagnosed with early onset Parkinson's three years ago, at the age of 53. I am married with two sons and live in County Wexford. I started to notice I had symptoms such as slowness of movement, fatigue and unexplained pain. I would sometimes have a tremor, which started to appear more often if I was under stress.

It was thought I might have fibromyalgia and an essential tremor. My sense of smell was affected and I was referred to a consultant who did a scan, which came back clear, and I was then given steroids, which showed no improvement. My shoulder was sore, so I was referred to a physiotherapist. My left hand and wrist were painful and typing long documents became difficult. My sleep was disturbed and I would be awake for several hours at night. I also noticed I was not swinging my left arm when I was walking and I started to drag my foot at times.

I went through many years of wondering what was wrong and why was I feeling like this. We need more awareness of conditions such as early onset Parkinson's, as per Article 8 of the UNCRPD on awareness raising. My GP sent a referral to a neurologist and, even with private health insurance, it took three months to get an appointment. Going through the public system at that time would have meant waiting about 18 months because there are not enough neurologists in Ireland.

It is a lot to take in when you are told you have a progressive, incurable disease. I left the neurologist's office in total shock and wondered what I would do. I was given a prescription which I paid for myself in the first two months because I had never heard of the long-term illness card. I went through many emotions as I learned that my life would no longer be how I had imagined. It was difficult to tell our sons, who were 21 and 18 at the time. I also wondered who else I should tell and when, and if I would be treated differently. It was also coming up to our 25th wedding anniversary, but I did not feel like celebrating and thought: what a gift for my husband.

I was working in accounts at the time. I had hoped to have worked for many more years, but as the months went on, I was finding it more difficult due to lack of sleep and pain. I did not know what options were available to help me to stay working. I had not heard of EmployAbility or work adaptation grants. So, nine months after my diagnosis, I gave up work due to the symptoms of early onset Parkinson's.

I felt very isolated, being diagnosed with a disease that normally affects older people. My closest experience of Parkinson's was with a family member who was diagnosed when he was in his 80s. I wondered if I was the only person in County Wexford with this condition. Eventually, I met people my own age, and through this peer support I got information on what I needed to do to try to live as well as possible with Parkinson's.

I had balance problems in the beginning, because I did not know that I needed to do certain exercises to help this. I was in a supermarket one day and I went from just standing to a stumble. I could see from the look on a lady's face that she assumed I was drunk. I have also been told that I look as if there is nothing wrong with me, but it is only my immediate family that get the true picture of what it is like to live with the disease: the fatigue; being up for hours at night; suffering stiffness and pain; toes curling under making it more difficult to walk; planning your activities when your medication is working and you are not "off"; struggling down the stairs with pain; and trying to do household chores when fatigue has set in. My day now consists of alarms for medication, timing meals so that they does not interfere with medication, physical exercise and voice practice. I used to be able to garden all day long, but now I have to come in after an hour to rest. Some days, I just cannot do much at all due to persistent fatigue and pain and spend a lot of the day on the couch. Eating a meal takes longer because I am slower cutting up food and my ability to chew is affected as the reduced amount of dopamine in the brain affects all my muscles, even my tongue. My cognitive ability is also affected. I used to be able to multitask, but now I have to concentrate on one thing at a time. I am sensitive to loud noises, so even a supermarket visit can be stressful. Stress tends to worsen my symptoms.

At the moment, I am said to be in the honeymoon stage of the disease. The medication helps, but it does not slow the progression. Exercise is the only known method that helps slow the progression. Advanced Parkinson's can lead to more involuntary movements, and people find it more difficult to move - even to turn in bed. Freezing of gait is another symptom of advanced Parkinson's, which means that your feet feel stuck to the ground and you cannot move forward.

Parkinson's is a very misunderstood condition. There are so many symptoms, and the condition affects everyone differently. I applied for a medical card, but I was turned down because my husband was still working. I would like to outline roughly the cost of an average week. Exercise classes cost €30, alternative therapies cost €65, supplements cost €12.50 and travel costs to attend therapies or classes amount to €25. That comes to a total of €132.50. My social welfare payment is €208.50, which leaves me with €76.00 after paying for the above. If I need to visit to my GP, it costs €55, which is an extra for that week. The social welfare payment needs to be increased and a medical card granted, especially as there are some services that are only accessible if you have a medical card.

There are many functions that are affected by Parkinson's. I noticed that my voice had become very low and I was starting to leave social events early as people could not hear me. I eventually got on to a programme called LSVT Loud. It has really helped me and I now have the skills to help keep my voice strong for as long as possible. In County Wexford, I do not have access to the care of a Parkinson's nurse. I see my consultant once a year, but I do have questions in between those visits. Parkinson's is a complex condition that affects everyone differently. Therefore, one size does not fit all.

We are not getting the care we need to help manage this disease. We should be given a care plan on the day of diagnosis that includes physiotherapy, nutrition advice and voice and occupational therapy. We also need counselling to deal with the shock and ongoing challenges. Early intervention with a multidisciplinary approach is essential to live well with Parkinson's. It would be of huge benefit if we could attend a centre for a week of intensive therapies and assessment and be able to return again after two years for reassessment. This would help monitor the progression of the disease, as per Articles 10 and 26 of the UNCRPD on the right to life and habilitation and rehabilitation, respectively.

Parkinson's is one of the fastest-growing neurological diseases. The incidence of Parkinson's is expected to double by 2030. I am pleading with the Government to act now and to put in place the services necessary to help us live well with Parkinson's. The provision of early intervention and community-based programmes would be money well spent and would take the pressure off the hospital system. People need to have access to ongoing exercise programmes nationwide incorporating balance work to help prevent falls, which can result in fractures and hospitalisation. I ask the Government to ensure that we are not the forgotten people with this disability. We have families that care about us and this disease affects their lives also. I am still the same person as I was before my diagnosis. I ask others to please see me, and not the disability, as per Article 17 of the UNCRPD on protecting the integrity of the person. I thank the members for listening to my opening statement and I welcome any questions they may have.