The Pump
- Ten weeks being an AbbVie Guinea Pig
I’ve Advanced Early One Parkinsons. After thirteen years of taking pills I’m offered a new development in treating the disease. It involves a pump injecting plasma into the subcutaneous fat of my stomach. It’s attached to my body like a Walkman 24/7. On the very first day I notice I can speak, quite normally. I also note that I feel weak. But the main takeaway was the return of my voice. Nurse 6 says that they want to get to ten weeks and that it will be a ‘trialling’ time ahead.
10 July
Nurse 2: ‘They talk about clarity…some people, but everyone’s different’ She inspects my stomach. The cannula has to move around to different sites on my stomach to avoid infection. I recognise ‘clarity’ in my head. And it feels great, to recover this vital potential. I’m usually waving and drowning as I walk down the street but that’s stopped (dyskinesia). And my voice is back. I do feel weak. At the Lidl checkout the woman says ‘love’ and ‘darling’. I haven’t heard those terms in years.
18 July
There’s a video on YouTube where a man is trying to make a cup of tea. He is in the throes of dyskinesia. Then he avails of the Produadopa pump and he walks away as normal, carrying his cup of tea.
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26 July
Anger feels good to be able to express part of life denied to Parkinson’s people, you can muster up the syllables and heroically pronounce your anger but unfailingly dithers and dwindles away and the Davis Phinney people all applaud and offer helpful tips to reframe perspectives All good hearted and sympathetic. But to feel anger connected to the energy in the body like the time I saw that traveller in the middle of traffic, on Meath street, strip to his waist and his arms outstretched hold the force of two opposing hakas until he claps and releases a roar to correct the countless hurts of generations. A skinny local adult In a tracksuit chirps up – ‘yeahhhh, get into it’ then rubs his hands, then smacks his thighs and jumps in the air.
27 July
A day to live and I squandered it on giddiness and arguing. Was I deluded in expecting there to be some sort of shared excitement in the transformation. The illusion that you can be separate from others, you are configured, you are projected upon, you are enmeshed, you feel a slight ecstasy and you get to help out with the house work for a change.
28 July
Three weeks on the Produadopa and I can speak. I can initiate a conversation after years of nods and limited improvised sign language. There are bursts of euphoria for five or six seconds every second or third day, glimmers of normality and then the doctor reliably informs me this will last for one more week, still I hadn't imagined being able to even think about writing a post like this. Thanks for the support.
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29 July
An infection. A pink streak across my belly, it looks ‘angry’. Nurse 3 arrives. She starts by talking too loud and too slowly. I answer her with my newly regained normal voice. She sits beside me to inspect the skin. She flicks my fingers out of the way, rather than ask me to move them. ‘I’d keep an eye on it and if there’s no change in the morning, go to your GP’. We go to the GP the next day, lucky to have secured an appointment at short notice. At reception there is some bafflement at my medical card. They establish that I should be going to the doctor on the island. I explain that we are in Dublin to avail of the AbbVie nurses, they won’t go to the island. Eventually I get to see a young doctor. He is interested in the new technology of the pump and reveals his own cannula – for diabetes. He repeats the same basic points until he lets us go with a prescription for antibiotics.
30 July
The Spanish Opening
This is Tara’s first time at the chess night at Bismark café. There is a strong smell. My center pawn forks her knight and bishop. She knows moves but not yet strategy. Beginners assume the game is closer than it is with all the empty space. She is willing to concentrate and that will serve her going forward. I offer to go over an opening. I show her the moves and she repeats. Tara takes a phone call, she acquiesces and reassures the other person that ‘no fifteen minutes is ‘fine’ and that she is willing to make a newly invented appointment. We go over the opening one last time and I tell her I learnt this when I was ten years old.
I’m walking home, like a normal person, even though the smell still persists. So it wasn’t Tara all along. The smell is rotten and vinegary. It is from my skin infection. Here I was looking forward to feeling normal. I was so happy walking back along the same route where it used to be an ordeal terrorized by paranoia. The time I carried the bottle of wine, a gift from Valentin. The paper wrapping disintegrated from my sweaty hands, then I slip, then the bottle slips. Half of the wine fizzes out and now I’m worried I look like an alcoholic. I just want to get home, the physical pain in just moving my legs. Back to the house. Grace is glad that I am back.
30 July
The antibiotics don’t seem that effective and now cellulitis is forming so we go St.James’ A and E. Again there was a questioning over why did I go there
and not to Galway. There is a brother and sister sharing headphones watching funny episodes of the Voice. An elderly woman walks in and stops in front
of the woman behind me. ‘’How do I know you?’ She shares with everyone. The woman who she believes to be know is amused, a distraction from the
parade of pain. The standoff is maintained by smiles until the knower throws out disjointed bits of information. Billly…Cositigan?.. or the Drimnagh…?
The woman unaware of the connection to this stranger just shakes her head and says no, no. It does not deter the woman who believes in the connection. In the meantime, a biker in his fifties has entered, he is playing a video on his i -phone on repeat about how to predict the future. I assumed he was foreign , in that was why he would let the video loop. Now the brother is curled up on the floor and his sister is crying and trying to get some attention. The security arrive and get him to sit in a chair. I’m called to take my blood. The nurse is kind and interested in the Aran islands when I tell her my story. As soon as I’ve served her purpose, she lets me go - ‘take a left and a left’. The brother is being seen. His sister is still crying. The woman behind me has come to recognise the other woman, a character has been projected upon her which she now playfully entertains: ‘oh yeah, Drimnagh, living there for years’. ‘Oh yeah Johnny Costigan, the tall, baldy lad…he’s my cousin’. Two hours later and I’ve a new script with better antibiotics.
I piss five or six times during the night. The urine is clear and almost regular as clockwork. Nurse 3 says this is not one of the symptoms. I ask her if weakness is a symptom? She says no. She reminds me to massage the nodules. After a cannula is removed the subcutaneous matter tends to harden and is supposed to be massaged back to the original texture. But this doesn’t happen as easily as your led to believe.
7 August
We have an appointment in Galway, the first check in since the pump started. C is wearing an excellent pair of black polished brogues, he’s nailed the student-junior- doctor aesthetic. I’m giddy and making jokes. How is the gambling? I still haven’t won. Nurse 6 enters. He’s carrying forms. He’s usually carrying forms, these are rolled up into a sort of baton. Refusing offers of a chair, he demonstrates his make-do attitude by ingenious use of a table to support his relative heft. I mention that it feels very good but is weakness a symptom? No. C adds that this is the first three or four weeks but it will taper off thereafter. No one told us this and Fred starts to shift about and says everyone is different and we just want to get to ten weeks and take it from there. Nurse 6 tells us about someone who lacks the dexterity involved in maintaining the pump, then he crosses his arms, shrugs and ends with a toss of the head that lands with a tilt to one side, there’s nothing to be done just be thankful it’s not us. Where’s the consultant? He’s with someone at the moment. C gets me to tap my feet and to tap my fingers. Nurse 6 smiles, almost smugly. Yeah like there’s a guy who used to run, had to stop, now he’s back running. Another guy had to stop driving and I saw him the other day in traffic. C goes to see if the consultant is coming. returns. The consultant won’t make it. Unforeseen circumstances. That’s probably a good sign.
12 August
I go to the island.
On the boat I start shaking uncontrollably, images are dark, I can’t supplant them with light or goodness, I involuntarily think of the Israeli hostage in a tunnel, this gives way to a memory of being in a fun fair thing, a vessel designed to shake the kids inside. A vague memory of being groped heretofore never manifested. Eventually I hit upon the image of proton stars and how there can be physically nothing after these, offers some temporary relief but when I think I overhear through the noise, some lads talking about me, I zone in on this and I am calm. It lasts about eleven minutes until I’m back rocking again. Then through Sunda Salach a céilí band lashes into an impromptu session.
Hallucination
I see a rat run over my foot and I jump. I am standing beside my mother at the window. We are looking out to see if there is a crowd gathering on the beach, a search party. The rat was large and furry. I know that it wasn’t real but the worry is that is a side effect of the pump. I e-mail Fred, he says to turn the pump to base level. At every appointment the doctor will ask if I’ve being seeing things, and the answer has always been no. This could be a sign of psychosis. However, I believe it to be a consequence of not being able to sleep straight through for a whole night. Instead the frequent urination is constantly interrupting. I google: Nocturia.
Then I have my second hallucination. I wake up and there is a guy in my bed. I recognise him from school. He was in the same year as me but in a different class. I knew him to see but I never spoke to him. I think he befriended Dermot and Eoin when we got into UCG. I might have met him there, as I was playing pool with Cathal who had been in his class in Mary’s. The unreality of this experience made it less worrying than the rat. It is hard to render the quality of the hallucination, the thing isn’t fully three dimensional, yet it is not two dimensional either. It feels fragile and real.
I go to the doctor, to try and sort out the urination. He tests a sample, there is no uti. He advises me to stop drinking any liquids from five o clock onwards.
I think I sleep better.
A few days later and I’m on the toilet for three hours. I put a finger up there and I’m shocked to find something hard and solid. I go to the doctor and he says that I have to go to Galway, to hospital. My brother books two seats on the plane. We are lucky to secure two seats on such short notice but the weather does not look good. Fog is the one thing that stops the plane. We pack our packs and wait at the airstrip. The fog seems to be clearing in the east by Blackhead. Then there is a window available and we get to the mainland. (plane takes eight minutes) We wait for about three hours in A and E. Then a nurse inserts two enemas. We have to stay in a hotel that night and return to the island the next day.
.Two days later and I get my second skin infection. I go to the doctor and he prescribes the same antibiotics that I received in St.James’. but for five days instead of seven. I ask him does he think I should keep on with the pump. He replied that it is a question only I can answer. Then I go to the doctor again. I am terrified that my muscles are wasting away. He pats me down to disprove my worry.
Muscle wastage
The weakness is rife throughout my whole body. It is the worst feeling. The nurses say that it isn’t a symptom of the pump. They refer me to my GP, who in turn refers me back to the nurses. Which leaves me to research online. It seems that with the three courses of antibiotics that my biome has been compromised. And that my muscle is being broken down to compensate for lack of energy. It is frustrating the way in which people discount the ‘terror’ of feeling weak throughout my body. Am I better now than when I didn’t have the pump? People don’t want to put up with a voice that is painful to listen to or to deal with someone flapping about without explanation. I buy Revive supplements and prebiotics.
I start looking online for the easiest way to die. It seems that Nembutal is the best option. But how to access it is proving difficult. I order Foxgloves to be available next year. I read that salt can lead to death but it isn’t foolproof, I don’t want to hang or drown myself, just wouldn’t like to disturb the person who discovers my corpse. I look at Dignitas. I think of someone I know who now runs a pharmacy. I could befriend him ala Better Call Saul Goodman and devise a plan to secure the right drugs or Nitrogen apparently works best. I’m terrified of being reduced to mere autonomic responses at the mercy of casual cruelty, so often exposed in undercover exposés on TV. I order the RNLI Lifeboat free Wills. I’m not suicidal, it’s just that I want to act while I can.
Dublin
It’s safer to be in Dublin. More access to both nurses and doctors. I tell Nurse 3 about the ‘weakness’. She proposes that it is a worsening of the Off symptoms. I tell her about my theory re the biome, she doesn’t shoot it down. She wants to know if we are going to stay in Dublin now. It’s as if we’ve had our fun trying to live on the island but isn’t it time you settled, unless you don’t want to avail of our services. What services are they? An irritated attitude that is not concerned with health as a vocation but rather is interested in protecting AbbVie from any possible negativity. She repeats – do you feel better now than you did before the pump?
Nurse 6 and Nurse 4
They take an antagonistic attitude from the beginning. Nurse 4 there seems to be two different stories going on. Nurse 6 says that he believed that I had said that I was getting more out of the pills than I am out of the pump. I never said that. I had a terrible morning and was just coming On, halfway into the meeting. I told them that I’d stayed in bed to conserve energy for the travel. Nurse 4 latched onto this and said that it’s not a good sign if I’m staying in bed all the time. I had to correct her three times. It was bizarre, this onslaught of false information and misconstrued feedback. Nurse 6 says to have the pump on max as much of the time as possible. They seem to blame me for the constipation. They seem suddenly to be afraid of the likelihood of psychosis. Nurse 6 says in fairness, you are running out of options, followed by his signature shrug. Nurse 4 brings up Nodules blatantly ignoring the fact that I had just said that I massage them. They point out the lack of dyskinesia compared to when I entered. .I ask them what is the deal with getting to ten weeks? They admit that it is an arbitrary deadline and that they are learning about the pump all the time.
September
Nurse 2 is standing over me. I can’t find a potential site for a new cannula. She is willing to correct the way the belt is attached to the pump. Nurse 3 is there too and she reminds me to massage the nodules.
I email Nurse 6 that I will be stopping the pump, as I had tried four sites on my stomach, and each one flared up and stung. My stomach is a dartboard of scar tissue and inflamed patches of skin.
But at least I can dress myself.
I don’t post this on Facebook.
