What is a typical day like and what does it feel like now I am in my sixth year since being diagnosed with Young Onset Parkinson’s Disease?
Well before I describe that I need to bring the blog up to date with the clinical progression.
It is of course hard to catalogue in detail my progress retrospectively for the last three years without any notes recorded anywhere. Safe to say the condition has progressed! It is a progressive disease!! I have had to continue to increase my medication to keep apace with the progressive symptoms. My neurologist has anticipated through his experience what additional medication I have needed and roughly when, according to what I have described to him at regular outpatient appointments. To some extent I have lived through the last few years believing I can beat and overcome the progressive nature of the disease. The only real strategy I have employed though is to get on with things and largely ignore it! Hence, I haven’t posted anything for a long while.
This also probably because, for the most part I settled down with the medication (I was on all types after the first two years) and had overcome the initial shock of diagnosis and accepted the new normal. I am grateful as this has enabled me to spend time discovering new things, new hobbies, and making myself as useful as I can around the house and generally enjoying life , putting my Parkinson’s to the back of my mind.
However, I have steadily graduated up the ranks of Sinemet usage, experimented with different forms of Dopamine Aganists, and lived the ups and downs of changes in the non-motor symptoms of Parkinson’s Disease. Over the last 18 months or so I have experienced worsening on and off periods where things are working well for the most part and not so well the next. My dependence on medication has steadily increased, as has the frequency and unpredictable nature of the wearing off, reaching for another tablet and waiting for it to kick in. I have reached the point in medication terms, where I am able to add in one or two more tablets of Sinemet (600 to 800mg daily) safely without moving into toxic levels.
So I am now considered as having advanced symptoms by my neurologist. My next steps are to either move into more continuous forms of levodopa treatments (wearing a pump to administer drugs either intra-venously or directly into my stomach), else I have Deep Brain Surgery. I am currently, considering when is best to have the latter.
Back to a Typical day then…..
Well truth is there isn’t a typical day. Sometimes I have slept well & feel good , almost symptom free but this is rare. Regularly, say 70% of the time, my sleep is disturbed or I have just been unable to sleep. Sometimes the meds work brilliantly and again I am symptom free but this is rare too & often the efficacy of the meds is not so predictable, even though I try to be consistent with the timings of tablets. I experience on and off periods which can vary from half the day off or at the other extreme with minimal off time. So having Parkinson’s Disease , even with on periods that to the outside world looks like I have nothing wrong with me, is an ever increasing debilitating battle. The condition is progressive and there is no cure.
To characterise it as best I can I would say right now, I have 25% of my day when I am fine, 25% when I am managing medication or transitioning between doses, 25% when I am definitely off & 25% when I should be managing therapy and exercising.
What are my actual symptoms? What does it feel like?
Primarily still right sided but dominated by rigidity and slowness of movement, and fatigue. I walk funny, lurching from side to side with gait disturbance when symptomatic and sometimes shuffle or can only take small steps. I stumble often, as my right foot/leg do not move as much as my brain is expecting. I have recently tripped over myself and lost my footing badly taking a fall to the floor, bruising my rib cage and cutting my knee. I have a slight tremor externally but internally I experience significant weakness , especially in both legs which cause me to want to sit or better still just lay down. The internal tremor is similar to what you experience when uncontrollably shivering when you get too cold but without any outwardly visible movement. It is at best mildly annoying to worst extremely agitating and completely takes over your mind, like an intense pain you need it to be controlled and go away. When symptomatic with these movement issues , although not paralysed, it takes extreme effort to do anything at all and makes me tired and out of breath to force my body to move.
Cognitively, I am good except when off, when I feel vacant and empty of any thought or desire to do anything, even talk. I suffer from low mood and apathy, in truth, quite depressed for a large part of the time. I experience definite periods where I know I should be feeling joyful but just feel empty. Although a cognitive impact this feels very much more physical to me, a feeling that is hard to explain but it can be completely gone the next minute (fundamentally, with some Dopamine back in my brain). I am a different person from one minute to the next. I can be agitated and paranoid , and mis-interpret things people say, I often am working out the context too slowly. I am so frustrated with myself, and getting tired of fighting to remain able; as a man, a husband, and as a father, to do the things I want to do. I am mad at not being able to fix and do things quicker. I am mad at being consumed by this condition. The mental fight is probably the hardest thing!
Other symptoms include Hyperhydrosis or excessive sweating. I can be pouring with sweat from my brow even just by getting dressed or the smallest of household chores. I also now notice dystopia in my right foot or ‘cramping’ where my foot feels like it is curly over on itself and won’t stay flat , which is another addition to my funny walk!
Given my age, 48, I also have the added complication of the medication and its long term use causing dyskinesia (involuntary movements) which can be more debilitating than the condition itself. I have already begun to experience this , especially towards the end of doses of Sinemet. Theoretically, I can resolve some of the above symptoms and their impact on daily life by increasing my medication. However, the reality is I am faced with a choice of putting up with them in order to preserve the level of dyskinesia response for as long as possible or risking my quality of life with a double barrel of dyskinesia and Parkinson’s Disease combined.
How does this impact working?
Well it is increasingly difficult to find the time to put Parkinson’s Disease to one side and make a meaningful contribution as I once did and still wish too. Consequently, the cognitive benefit, enjoyment and interaction I get from work is being diminished. It is becoming outweighed by the time it takes away and the direct impact on the condition, adding to the fatigue, stress and worry in not making a meaningful contribution or trying to time my ‘on’ periods for meetings or conversations. Physically and cognitively my speed of operation and output if you could measure it, I would guess, is a third of what it was ten years ago.
So medical retirement is undeniably the end result with Young Onset Parkinson’s Disease. Cognitively, I would hope I can still contribute ‘something’ into the future but consistent productive economic output will be permanently gone and so will my employability for salaried work. I feel I am close to this point now.
What does this all mean? What will the next five years be like with this condition?
Well I will let you know! 🙂
YOPD A New Normal 