This is probably the most difficult section of the blog that I have attempted to write yet as it was really the beginning of the onset of real aggressive symptoms and challenges. Up until now, my condition was essentially an awkward inconvenience, I was living a typical normal life with family, work and annual Summer holidays in the campsites of France and Spain there; were few physical tasks that I was unable to undertake. I will attempt to focus on the non-motor symptoms now and see the impact they might have.
Non-motor symptoms are sometimes overlooked but can greatly affect daily life, including your emotional well-being and communication with friends and family
I shall list some of the more common non-motor symptoms and use this as a guideline to reveal those that were peculiar to me:
* Mental Health
Research has shown that anxiety and depression have the greatest impact on the overall health of people with Parkinson’s - I discussed this with my consultant at times and admitted that I was prone to mood swings and low mood and lack of enthusiasm for everyday life in general. He advised anti-depressants which I steadfastedly refused, I did not wish to travel that path. Besides I was already taking 16 tablets a day and wasn't in any great hurry to add to that!
Occassionally I would be subject to feelings of helplessness or worthlessness, apathy was quite a common symptom. I didn't see the point in doing activities, although this was counteracted by the boundless and endless pleasure I got and still get in watching my children playing sport. Standing on the touchline watching my kids play freely removes any negative feelings and thoughts of Parkinsons.
Obsessive-compulisive disorder (OCD) was very prevalent at this stage, but as I was so embarrassed by my lack of control in managing this symptom that I didn't share this fallabilty with anyone, including my consultant. ( I will revisit this later!)
I had heard the term fatigue before but never experienced it. Let me just say now that if someone says they are feeling a bit under the weather and are very tired frequently, this is at the bottom of a logarithimic scale with fatigue at the top!
Some days when I experienced fatigue, I felt completely drained of energy and had to lie down immediately until it passed. It felt like every bone in my body had shrunk in size and when I attempted any movement there was complete resistance. Fatigue is not just feeling like a siesta in the afternoon, at times I found it hard even to muster the energy for a thought.
Cognitive and Behavioural Changes
People with Parkinson’s may experience cognitive impairment, like issues with thinking and memory. This started to become more and more of a problem as time passed. I was always confident in my ability to plan and multi-task and enjoyed activities such as coordinating and hosting table quizs, treasure hunts and general fun-type pursuits.
However, my job role changed at work and a lot of my time was spent on the phone in conference calls with my colleagues in the U.S. & Canada. Simple descriptions on work and status updates that I was to share with them daily were now becoming a trial. To be honest I was feeling anxious and a litte stressed before each meeting as I was finding it increasinlgly difficult to find the correct word to use in the general conversation. So instead of using one word in the correct context I would search frantically for numerous words to try and relay my meaning - I'm trying to search for an example of this which might make it easier to grasp - "to bluff one's way through (something) by talking nonsene" - that's what I would end up saying rather than using the single word "bullshit", so where one word would suffice I was attempting to use a phrase!
This led to feelings of inability to do my job effectively and loss of my self-confidence which all contributed to make things even worse.
Whilst I think of it, I referenced above the symptom "stress", let me just confirm that this has one of the biggest impacts on the Parkinon's condition. I used to think of my character as being quite laid back and mostly easygoing. However, I soon realised the impact stress was having on me. I would suddenly feel overcome with many of the Parkinson's symptoms, freezing of my left arm and leg, restless leg syndrome (uncontrollable movement in the lower leg) and I would be smack-dab in the middle in a stressful situation or environment.
Pain
More than 80% of people with Parkinson’s experience pain, and for some, it’s their worst symptom.
Pain in the muscles and bones - this was very irritating and annoying, in my case this specifically was felt in my wrists and ankles - it's what I imagined arthritis to feel like
Some people with Parkinson’s may also experience abdominal pain and joint pain.
Constipation - ( I will return to this later as it only became a problem working it out recently!)
Speech and Swallowing Problems
Parkinson’s can lead to speech and swallowing problems. This is because Parkinson’s affects the nervous system and causes problems with the nerves and muscles used for speech and swallowing.
Between 75% & 90% of people with Parkinson’s will develop speech problems. Problems with speaking can make everyday conversations difficult. Speech problems may include:
- Speaking quietly - this was an issue for me, especially on conference calls or in a busy environment such as in a pub with friends
- Having a monotone voice, also having a fixed expression on the face (I was unable to conjure up a smile during this phase also due to lack of muscle control in my face). So in all the pictures of me at weddings or funerals I had the same bland expression! Whilst this was quite appropriate for funerals, it appeared that I was scowling and somewhat jealous of the groom with his gorgeous bride.
- Stuttering, stammering, or mumbling -experienced these in various situations with the mumbling being the more prevalent
- Slurring words - more pronounced as I got more excited perhaps in telling a tale or funny story
Swallowing also becomes harder for many people with Parkinson’s - felt like was producing more saliva yet also prone to dry mouth.