Stop Dumbing Down

I feel that it is time to discuss a difficult subject in the progression of Parkinson’s Disease; that of death. The end of life. I have noticed that, increasingly, charities and treatment providers inform that ‘Parkinson’s is not terminal’; it won’t kill you. Increasingly, but conversely, I find myself learning that this simply is not true; certainly not in the literal or ‘black and white’ way that this message is being conveyed.

First, I would clarify that I am not one for looking on the negative side of life. I am a natural optimist and I live in hope. In my experience of this disease, I am noticing a trend by charities and treatment providers to communicate to people with Parkinson’s a message that minimises the often harsh reality of Parkinson’s Disease. I believe that falsely, though no doubt with good intention, the reality of how Parkinson’s can be life-limiting is being mis-presented. I believe that the consequences of this are twofold.

First, I believe that people with Parkinson’s may not manage their own wider health and risk factors as well they might if they understood that Parkinson’s does pose a threat of limiting life and, second, that this message of Parkinson’s not limiting life-span is mis-educating the broader public. Indeed, I have had people say to me, upon learning of my diagnosis, “Oh, well at least it won’t kill you. All you have to do is take medication and you live a normal life!” This adds to the already infuriating comments from people who say “Well, you look well. You probably don’t even have Parkinson’s.”

My situation is this…

…When I was diagnosed, in 2017, I was walking with a stick. I was dragging my right leg. I was suffering from facial masking. My voice was frequently weak. I was dribbling from the corner of my mouth. I had fallen several times and hurt myself. I was having increased difficulty walking. I would bump into things as I lost balance. I had difficulty gripping and so would drop crockery all the time. I was living with dire insomnia, restless legs syndrome and nightmares which, alongside acting out my dreams due to REM Sleep behaviour disorder symptoms, was exhausting me. I was having bouts of constipation. I was cutting myself when trying to prepare food. I could go on, but you get the gist; Parkinson’s was affecting most aspects of my life and it was challenging, to say the least.

I was diagnosed and put onto medication. I would take my meds three times per day; with five hour intervals between doses. I was on the smallest amount of Levodopa (co-beneldopa). This miracle medication did what my neurologist said it would; it would restore me to being me. Suddenly, I was almost symptom free during the hours that my meds worked before they started to ware off.

Today, I am on double the amount of Levodopa and I now take this every one and a half hours. Additionally, I take Rasagiline, Roprinirole and Clonazepam to help boost the efficacy of the Levodopa and to better manage my range of symptoms; which are now a very long list of symptoms. My medication starts to ware off after around forty-five minutes.

I saw my new neurologist a few days ago. he confirmed that my meds have been, and are, doing a superb job. He reiterated that I have an advanced and fast progressing form of Parkinson’s. My meds restore me and so I present as pretty healthy and I look well. The difficulty he has is that he is aware that my meds start to ware off after forty-five minutes and that I am on so much medication, already at this stage in my life, that there is not really anywhere else he can go in terms of prescribing. Before long, I will have exhausted what prescribed medication can do for me; not least of all because the cells that are dying, in my brain, will reach a critically low number and so it will be harder for them to receive and make use of the medication as it comes in.

So, my neurologist confirmed that I must now start thinking about whether the next stage in my treatment will be to move to Duodopa or Deep Brain Stimulation?

Duodopa is a gel form of Levodopa and this is delivered into the body through a permanently open incision into the intestine, where a cassette, carried externally, would pump the gel into my intestine through a tube, over around sixteen hours per day. Over time, the amount of Duodopa fed in through the tube, can in some way be increased; for a limited time.

Deep Brain Stimulation is where electrodes are inserted into the brain and attached to a box which manages a frequency that transmits into the brain and manages symptoms. The box is surgically implanted under the skin in an area close to the collar bone, I think. Over time, the frequency can be adjusted to meet ongoing symptom development; for a limited time.

Once either Duodopa or Deep Brain Stimulation reach a point where they, too, are no longer having an effect on symptoms, my neurologist advised that the next stage is to move to palliative care.

My former neurologist had told me, from the day of diagnosis, that the minimal life expectancy I should expect, should be seven years. he told me the average was around fifteen years and that the maximum I should expect should be thirty years.

Point 1. When a disease limits life-span, I understand that to be a terminal illness. I believe that, however, it is not called a terminal illness because many people reach old age before they are diagnosed and so by this point, they are likely to still live out a typical life span,

Point 2. I believe that for those of us diagnosed with Young Onset Parkinson’s Disease, reaching that typical life expectancy is not as likely. We are far more likely to have exhausted the benefit of medications and treatment options before reaching our seventies.

Point 3. I understand, from my former neurologist, that when people with Parkinson’s die because they have fallen or because they have choked, the death is recorded as being caused by falling or by choking. It is not recorded as being caused by Parkinson’s Disease. As such, there must be a lot of deaths happening, due to fall and choking incidents (to name but two examples) that only happen because the person has Parkinson’s Disease, yet the deaths are in no way counted as Parkinson’s deaths. This would surely mean that the true state of things is that Parkinson’s death toll numbers are actually unknown; namely the factual number of deaths that happen because a person has Parkinson’s, are not counted! If a person falls and the fall is a symptom of Parkinson’s, then surely the death should be recorded as being caused by Parkinson’s Disease?

Point 4. Again, increasingly, I see the word ‘disease’ replaced in patient literature with the word ‘condition.’ Sure, nobody with a disease likes the word ‘disease’. I believe that wording is being changed to kindly cater for the discomfort that people with Parkinson’s often have with the word ‘disease’ and what it means. The consequence of this, however, is that we start to imply a condition rather than a life changing, degenerative disease. This cannot be helpful to our cause? Do you see my viewpoint? Society will start to consider us to have an ailment, rather than a potentially life-limiting (terminal?) illness.

We are dumbing down our disease and the reality of it. I feel strongly that this is wrong.

My campaign here is simply this; for charities and treatment providers to clarify the full and true extent and number of deaths that are truly attributable to Parkinson’s Disease, as the underlying cause, no matter the method of death itself. A fall is surely not just a fall if it would otherwise not have happened, without Parkinson’s Disease?

I am now over four years post-diagnosis. In effect, if I have a minimal seven years of life expectancy following diagnosis, then that means I could be dead in three years. Yet, I am told that “Parkinson’s is not terminal; it doesn’t kill you.” Hmmmm. I don’t agree. Do you see my viewpoint?

Should I live another eleven years and meet the average life expectancy, well I would live to be sixty/sixty-one years of age. That falls less than the typical life expectancy in this country and so surely that would mean that Parkinson’s has been terminal? Do you see my viewpoint?

In the event that I reach the fill thirty years of life span I am told that I could expect, following diagnosis, then I would reach the age of seventy-five years.

The UK Government’s Office for National Statistics posts, on their web site, the following:



“Life expectancy at birth in the UK in 2017 to 2019 was 79.4 years for males and 83.1 years for females.”

Office for National Statistics.

So, should I live the full life expectancy of thirty years from the day of diagnosis, therefore reaching age seventy five years, I would still fall short of the life expectancy for males in the United Kingdom. this means that Parkinson’s has been ‘life limiting’ and surely that means that Parkinson’s is a terminal illness? Do you see my viewpoint?

My campaign is to increase discussion on this subject and to have the reasons for death recorded as Parkinson’s Disease, where the incident causing death would not have happened without the person having Parkinson’s Disease. I would like clarity on why Parkinson’s is not considered a terminal illness and changes made, if appropriate.

I raise this subject, knowing that I am not aware of any other discussion on this matter or any research or exploration of this subject that may have already answered my points. In that case, if my points are already answered, then I would be most grateful if somebody would please educate me on this matter.

Meanwhile, I note that the three time-frames for life expectancy that have been given to me are as follows:

  • End of life at 7 years following diagnosis. This, for me, would see me die in 2024.
  • End of life at 15 years following diagnosis. This, for me, would see me die in 2032.
  • End of life at 30 years following diagnosis. this, for me, would see me die in 2047.

If I were to live to the full life expectancy for males in the United Kingdom, based on the 2017 – 2019 statistics by the Office for National Statistics:

  • I would live to be 79 years of age and I would die in 2050/2051.

2 Comments Add yours

  1. calamero77 says:

    Hi Deano,
    Having read your notice I am like you baffled that Parkinson’s Disease is not classed as Terminal. My Uncle was diagnosed in his early 50’s with Parkinson’s Disease, at the end of his life where for a long time he couldn’t walk or do anything. He went into hospital with a chest infection and got worse as he couldn’t swallow cause of his Parkinsons Disease, he passed away but as you say they don’t state that is what he died of.
    As for wording it’s very important that it doesn’t get changed to condition as it’s not an affliction or skin disorder. Folk will loose the impact that this disease has on someone and there loved ones.
    Also as a carer and have cared for people who have had this disease it is totally life changing in all aspects of life.
    P.S Here’s hoping you with us the longer version my friend 🤗

    Like

    1. Hi Pamela, thanks so much for sharing your thoughts and insight. I’m sad that your family have Parkinson’s to contend with and I thank you so much for stating why you agree with my viewpoint. Wishing your family all good wishes. Deano x

      Like

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