On Thursday the 18th of November there was a meeting of the Oireacthas committee on Disability Matterson on the topic of Aligning Disability Services with the UNCRPD in consideration of chronic disease. Chairperson of EOPD.ie Mary Casserly spoke as a witness with regard to her experience as a person living with Parkinsons.
Note: Mary’s opening remarks begin just after 33 minutes into the video
Opening Statement ‘Aligning Disability Services with the UNCRPD – chronic disease’. The Joint Committee on Disability Matters
From Mary Casserly, Chairperson, Early Onset Parkinson’s Disease CLG, EOPD.ie 18th November 2021
My name is Mary Casserly and I would like to thank you for inviting me to speak as a person living with Early Onset Parkinson’s, and for the help the Disability Matters 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 Co. Wexford.
I started to notice that I had symptoms like slowness of movement, fatigue and unexplained pain. I would sometimes have a tremor which then started to appear more often if I was under stress. It was thought that 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 that came back clear; I was then given steroids which showed no improvement. My shoulder was sore so I was referred to physiotherapy. My left hand and wrist were painful and typing long documents became difficult. My sleep was very 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 why was I feeling like this.
We need more awareness on conditions like Early Onset Parkinson’s Disease. Article 8 of UNCRPD – Awareness-raising.
My GP sent a referral to a neurologist and with private health insurance it still took 3 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 neurologists office in total shock and wondered what do I do now? I was given a prescription which I paid for the first two months as I never heard of the long-term illness card.
I went through many emotions as now my life would not 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? Would I 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 and 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 was there 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 of a family member that was diagnosed in his 80’s. I wondered was I the only person in 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 was also having 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 and I could see 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 this disease. The fatigue, up for hours at night, 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 consist of alarms for medication, timing meals so that it doesn’t interfere with medication, physical exercise and voice practice. I use to be able to garden all day long but now I have to come in after an hour to rest. Some days I just can’t 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 as I am slower cutting up food and chewing is affected as the reduced amount of dopamine affects all your muscles, even your tongue. My cognitive ability is also affected as I used to be able to multi-task 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 what is said to be in the honeymoon stage and 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 PD which means that your feet feel stuck to the ground and you cannot move forward.
Parkinson’s is a very misunderstood condition with so many symptoms, and it affects everyone differently.
I applied for a medical card but I was turned down as my husband is working. I would like to outline roughly the cost of an average week.
- Exercise Classes € 30.00
- Alternative therapies €65.00
- Supplements €12.50
- Travel costs to attend therapies/classes € 25.00
My social welfare payment is €208.50 which leaves me with €76.00 after paying for the above. If I need to visit my GP, it costs €55 which is an extra for that week. This social welfare payment needs to be increased and a medical card granted as there are some services only accessible by a medical card.
There are many functions affected by Parkinson’s. I notice 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. This has really helped me and I now have the skills to help keep my voice strong for as long as possible.
In Wexford, I do not have access to the care of a Parkinson’s nurse. I see my consultant once a year, I do have questions in between those visits. Parkinson’s is a complex condition that affects everyone differently and 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 to include Physiotherapy, Nutrition advice, Voice and Occupational therapy. We also need counselling to deal with the shock and ongoing challenges.
Early intervention with A multi-disciplinary approach is essential to live well with Parkinson’s. A centre for a week of intensive therapies and assessment would be of huge benefit and to be able to return again after two years for reassessment. This would help monitor the progression of this disease.
UNCRPD- Article 26 – Habilitation and rehabilitation and Article 10 – Right to life.
Parkinson’s is one of the fastest-growing neurological diseases and it is expected to double by 2030. I am pleading with the government to act now. Please have the services in place to help us live well with Parkinson’s. Early intervention and community-based programmes will be money well spent and will take the pressure off the hospital system. For example, people need to have access to ongoing exercises programmes nationwide incorporating balance work to help prevent falls, which can result in fractures and hospitalisation. Don’t let us be the forgotten people with this disability. We have families that care about us and this affects their lives also.
I am still the same person as I was before this diagnosis. Please see me and not the disability. UNCRPD Article 17 – Protecting the integrity of the person
Thank you for listening to my opening statement and I would welcome any questions you may have. Mary Casserly