Self-Administration – 3

It was suggested that I should be permitted to administer my own Parkinson’s medication. That way I would not have to worry that meds would be late, or not turn up at all, or be early.

It is tempting, I managed all my medications before and did the record keeping as well and scheduled the meals for optimum medication absorption. I could manage the odd adjustments that one has to make like take an extra dose (without giving someone a heart attack) when you are having a really bad night and have to attend a meeting first thing in the morning.

Tempting, but it is not the way to go.

It is a bad idea

Well friends, that’s how I view you and I do trust you. I have learned that I am busy dying, which was what my neurologist was trying hard not to have to tell me when I was first diagnosed, bless him!

I am deliberately being melodramatic to make sure that you hear me. When they tell you that you have Parkinson’s and that it a neurodegenerative disease, that is what it means!

Somehow a “bug” of some kind, a prion-like thing, entered into my system, probably something that I ate, or it entered through my nose and airways. Now, just like with mad cow disease (bovine spongiform encephalopathy or brain turned to jelly or Creutzfeldt-Jacob – you choose) this friendly prion (I tried to get the researchers to define this more clearly, some said it was the name of a protein, others felt it was a gene defect, but somehow it causes proteins to misfold) gobbles up your neurons and eventually it’s all over. Fortunately, it takes a little longer with Parkinson’s. Which does not sound like a blessing, but I have so much I would like to do, to share.

The Proteins

Proteins are complicated molecules, consisting of many smaller components, those amino acids the stuff eggs are made of, but the way they are shaped in 3D space is important for proper functioning. I don’t even begin to understand it. I had a hard enough time remembering the names of those basic building blocks we had to learn in organic chemistry. It makes one appreciate how great God is who had designed all this.

Somehow the knowledge of how to make proteins is encoded in our genome. I spent many long hours studying this, and I can see how easily something can cause the protein to misfold. My mother used to get me to help her fold the sheets and towels. You could fit so many more in the closet, and if you folded them in the right way, it was so much easier to make the beds later.  In Parkinson’s the protein is alpha synuclein, rather than neat proteins in layers they are crumpled up in clusters all creased I would imagine and form Lewy Bodies. That is still the only reliable way of confirming that you have had Parkinson’s – by seeing if you have Lewy Bodies in your neurons – not a frequently used diagnosis as autopsies tend to be fatal.  It’s the same for several diseases just other proteins for Alzheimer’s, ALS, Huntington’s, cystic fibrosis, etc. Normally the body’s protein control system kicks in and repairs the damage. When the system is overwhelmed and the misfolding is too far advanced, the neuron is marked for demolition, or apoptosis, and dies. It is a sad moment because you were given a fixed amount at birth!

All the body organs are controlled by the nervous system. There is a lot of redundancies built in so you can lose a percentage of the neurons and still maintain some functionality. The so-called gold standard drug we have for Parkinson’s is only partially effective in that it only treats a portion of the motor symptoms, mainly the smoothness of muscle movement. That is a small percentage of the all the symptoms associated with Parkinson’s (less than 20% of the symptoms) but they are important for so many things we do that contributes to our quality of life – like writing and typing in my case. In the beginning of Parkinson’s we spend a lot of time getting the levodopa dose right and correctly so as it can make life more bearable. I will write a separate post to explain the technical reasons for all that goes with that – including the importance of the consistent timing in the case of Levodopa.

But we tend to forget that even in the initial honeymoon period the prion is still gobbling away at my neurons and I am losing a level of functionality all the time. Parkinson’s can best be represented by a knee curve which I will try and illustrate below. This would have taken me minutes to draw before, don’t laugh when you see what I come up with now – which is not bad when you consider I could not type two words until I started doing the brain plasticity exercises some months ago.

I created this graph in Word because I knew it would play an important part in the end so I worked hard to hone my skills. But it still takes time so rather than putting in all the details that I had intended I will just explain what it represents.

Remember that neurons are used to control all our organs, the heart, the lungs, what a nice veggie pizza smells like, etc. When neurons die that normally control an organ, you lose the functionality of that organ. Fortunately, there is a lot of redundancy built in and the brain can enlist other neurons to take over the function of the ones lost. This is depicted by the flat slope at the beginning of Parkinson’s. In the brain there are three clusters of neurons that are involved in our ability to speak, they are often referred to as Broca and Wiernicke centres. With them you are able to recognize words in the sounds that come into your ears, very much like Alexa can recognize words in my voice when I say Alexa, what is the weather? Then there is another centre where all the words and grammar rules are stored so that I just have to think what I want to say and the brain can put together sensible sentences using this stored information. Then when it comes to actually saying these sentences, how to form the sounds is stored in yet another centre. That there is some redundancies built in allows for my ability to express myself in many languages.

These neurons clusters are located in the left and right lobes of the brain close to the nasal neurons and are often attacked first. Most of us lose our sense of smell first, and the speech centres start to be affected. I first noticed forgetting words and names. I could still draw a section through the brain but I would be hard pressed to name the basal ganglia. Then Mr Prion started munching on the speech centres and started having trouble pronouncing words and I started slurring words. In a way this is fascinating because one can understand why it is happening. I find this very frustrating because people naturally give less credence to your words when you sound like that.

The Knee Curve

So back to the knee curve. During the honeymoon period the slope of your decline is shallow, thanks to the redundancies built into the nervous system. Which allows one to focus on the shakiness of muscle movement which levodopa brings relief after a fashion. So, I should really put little spikes on the slow slope to indicate the boost in performance we get from using levodopa roughly four time per day depending on how often you take your doses (I just included a few to illustrate the idea).

Then once the nervous system starts running out of redundancies for a specific organ, you start losing abilities of that organ much faster and the slope steepens. You will still see little blips of Levodopa improvements after the knee, but they are not great and are more random. The key to remember that levodopa does not have any improvement on the non-motor functions which make up 80% of Parkinson’s symptoms.

So, friends, I have only scratched the surface of Parkinson’s and no, I don’t think it is a fashionable disease, you don’t wish it on your worse enemy. Graham, do you recall what it was like for your father at the end. If you only knew what level of pain I endure all day, all night! I am trying to use what knowledge I have to make a difference for those who will follow, and there surely will be. In trying to use the EVC guide, I have learned a lot about Parkinson’s, I probably now know the scope of its impact on individuals and society more than most. I have worked for many years in a large teaching hospital, taught postgraduates at university and worked with provincial government to develop standards, draft specifications for major equipment and system acquisitions. So, I can confidently say that I know a lot about Parkinson’s, healthcare and public funding processes – but I am sad to confess, in spite of all I know, I will soon not even be able to say “Parkinson’s”. I struggle to open the bubble packs of medicine, I struggle to sit up in the morning to take the medications, and when I finally do, it is hard to swallow it. There is no way that I can take on the self-administering of my medication.

We are now in the downslope of Parkinson’s for me, the other symptoms are becoming more dominant and levodopa does nothing for that. Main concerns at the moment are insomnia, pain (dystonia) in the long muscle especially, I think they are the erector spinae and also the calf muscles and then the neuropathy is becoming unbearable. Constipation is an issue, I have not had a bowl movement for weeks and I am passing blood when I try (a polyp?). This is leading to acid reflux and when I try and swallow the pills they get stuck and I can assure you when the tamiflu breaks open in your throat it is awful. Same with levodopa CR, it sometimes comes up my nose… I have serious vision problems since Mr Prion has gotten into the optic area. Double vision, presbyopia, dryness of the eyes, and the mouth as the same nerves control those glands, and ironically lots of drooling at night because of inability to swallow and dental problems and according to the dentist it could be caused by a latent infection – have I been checked for UTI, can you believe it !??!

I know I am a long-winded pain, but I really try to be helpful in my way. My well-being and life is in your hands. You may have residents who have more life-threatening conditions than I do, but on the level of pain, fatigue, nausea I think I am with the worst you have. As you know pneumonia and falls could end it all abruptly.