Pills to pump….a big but hopefully really positive step forward

I decided to write this post after an important ‘chance’ encounter this week. Some would call it a coincidence – I would call it divinely inspired – and it is the third or fourth time something similar has happened. Additionally, I want to share a significant change in my treatment that I hope will be a really exciting development.

The chance encounter

While trying to help the daughter of friends who is looking for a job here, I reached out to someone (anonymous) who I hadn’t been in touch with for ages. Their response was immediate; they wanted to talk. They confided in me that I was the first person outside of their spouse and a medical practitioner they had told about their PD. We spoke for a long time, and they mentioned they had been reading my blog and found it helpful, which motivated me to write this update. It was actually a little amusing – when I went to tell this person some of my experiences they said they already knew because they’d read it. Clearly I have to find new material 🙂

This interaction reminded me that those with PD (or any serious illness) and their caregivers sometimes need someone to turn to for advice. I hope that, in some small way, this blog continues to help people. If someone feels I could help them, then please reach out to me.

Since my last blog post (less than two months ago), there have been some significant (and self inflicted stupid) developments, the latest of which is perhaps the most daunting yet potentially positive.

Quick Recovery

When I last wrote, I was just recovering from a sudden steep decline in my condition. It hit me like a train but luckily went away just as quickly. I adjusted my medication from 4*1.5 pills of Sinemet a day to 5*1.5 pills, and it made a massive difference.

I Pushed Myself for Better and Worse

In my last blog post I wrote: “I have tried to be sensible and honest with myself and others… I am a control freak by nature and I won’t ever be totally sensible and let others tell me what to do, but I am listening a little – not taking risks. I didn’t go to event X or meeting Y in person – I am (semi) pacing myself which is new for me.”

Guess what – I immediately paid no attention to my advice…

Like last year, I led the prayers for Rosh Hashanah (Jewish New Year) on both days. When the person scheduled to lead Yom Kippur (Day of Atonement) services was called into the army, I stepped in for that as well. Some around me felt I was mad but the good news is that I made it through without any issues, and I even fasted (with my doctor’s approval) while taking my pills, and it was fine.

However, I learned the hard way the full impact of cumulative sleep deprivation, stress, and trauma. Tragically, a valued client and person I admire lost his son in battle in Lebanon – a tragedy you can read about here. I had barely slept the night before (as usual, waking at 1 a.m.), and the funeral went on until after 2 a.m. I returned home by 3:30 a.m., didn’t sleep, and went for an acupuncture session at 8 a.m. Long story short, I had a major episode – I suddenly found it very hard to walk and fell at the therapist’s house. I was conscious but unable to move until it passed. It was pretty scary – when I fell the therapist and her husband were discussing with each other whether to call a paramedic or ambulance. I desperately wanted them not to but was completely unable to signal to them or make a sound – I was frozen solid but fully conscious for a couple of minutes. I had to be helped home and, after a couple of hours of rest and a new pill, returned to normal quickly.

It was a scary experience for me and them, and the lesson is twofold: It is important to push yourself to live life, but I overdid it and caused myself significant harm and a potentially dangerous fall. I need to be more careful and listen to common sense.

It also emphasized the impact on PD of stress, trauma, and sleep deprivation. I don’t have good ideas and living through a war is not the best of situations, but it certainly impacts me directly in a big way.

The Big Change

Three weeks ago, I met with my neurologist and my wife to discuss my treatment. Despite taking 5 doses of Sinemet daily, I still experience significant ‘on’ and ‘off’ cycles. We previously considered two next-step treatments and ruled out Deep Brain Stimulation (DBS) because my symptoms are less about tremors (which DBS benefits) and more about balance, shuffling, choking, freezing, and stiff muscles (plus lack of sleep, no sense of smell, constipation, bladder issues, etc.), areas where DBS is less effective.

We decided on a relatively new treatment called ProDuoDopa, which involves a pump system. It provides a 24-hour continuous supply of medication into the stomach area via a needle attached to a pump, similar to insulin delivery for diabetics. This method seems to significantly improve motor skills affected by off periods, delivering a steady supply that can be boosted as needed. Essentially, it’s a remote-control-sized pump attached to a tube injected into the stomach area every 2-3 days.

This is a massive lifestyle change for me since I will be hooked to a pump 24/7, but it apparently offers significant benefits. I am very positive about this opportunity to bolster my battle against PD and potentially change the game. I am hopeful it will help.

The pump is probably being fitted in three weeks, so I will keep you posted.

It is of course only one of the weapons of war against PD – I know I have to keep up the daily yoga, exercise, weekly physio and PT and of course diet, sleep and stress reduction – all whilst working full time which is critically important as keeping the brain active is possibly the most important thing. So at least I am staying busy.

Right now

I am feeling generally ok – the most important thing is that I am cognitively in really good shape (my clients, colleagues and Linkedin followers may disagree) which is crucial, my right side is pretty weak and I am far from 100% but I am coping. I know I shouldn’t write this because whenever I write that all is okay, it seems to change.. The change coming up will hopefully reduce the rollercoaster and I am hugely grateful to those who are helping me with the up and coming transition (provided the approvals and paperwork are processed).

I am also eternally grateful to my wife, kids and family for their ongoing support and lastly to my dog Buddy who seems to have a complete 6th sense for knowing when I am not doing ok and he immediately barks to raise the alarm.