Chapter 493 - Wednesday Excitement

Wednesday last found me at the far end of our main street taking advantage of a gift voucher from the Hot Air City carers group, a voucher for a massage, something I have never experienced. While making a booking my phone rang; damn I thought my mad mate ringing about having a coffee at the Club. Only when out on the foot path did I check the caller; the Wild Dog Carer looking after her since this was my respite day. I quickly rang home to learn that she "had fainted", out like a light for only a number of seconds, banging her head on the collapsible table among the Lego pieces. I walked back to the car parked at the Club and returned home. She seemed normal, the Carer may have liked to call an ambulance, I decided not to. Her blood pressure was about normal for her 113/62 on my Omron which is difficult to use because the cuff size is somewhat too large for her; her temperature was 35.3 C in her right ear, her movements were normal. Some months ago on a Saturday morning when her movements were sluggish and she was a little dopey, taking her to the hospital resulted in the usual emergency tests being done ECG, Xray (or MRI I forget), blood tests, referral to our GP, referral to a specialist, ultrasound scans on her chest, 24 hours on a Holter monitor, all resulting in a conclusion of maybe a TIA occurred and minor heart irregularities. For her age she was pretty good. Anyway, I hung around home for an hour then went back to town to buy her 5 winter nighties (her need for bedroom fans has lessened these cooler nights) and have some lunch. There has not been a repeat performance of "blackouts" yet.

Anyway, I again searched on line for precautions for the use of Duodopa and in the midst of the usual sales/marketing junk one is returned by Google these days was a "Duodopa - Product Information" document titled "Duodopa Indications, Dosage, Precautions, Adverse Effects". The following paragraph caught my attention:

Sudden Onset of Sleep
Patients receiving treatment with levodopa and other dopaminergic agents have reported suddenly falling asleep while engaged in activities of daily living, including driving a car, which has sometimes resulted in accidents. Although some of the patients reported somnolence while on levodopa, others perceived that they had no warning signs, such as excessive drowsiness, and believed that they were alert immediately prior to the event.

I really can't recall ever being advised about patients falling asleep suddenly while on levodopa medications, let alone in regard to Duodopa, especially now that she was advised to use a daytime dose rate of 7mL/hr, I think the highest dose she has been on so far.

The neuros suggest diphasic issues are causing the dyskinesias that she mostly experiences after mid-day, yet the above Product Information states "The dose of DUODOPA may need to be adjusted downwards in order to avoid levodopa induced dyskinesias." Perhaps Abbvie, the manufacturers of Duodopa, aren't aware of the word diphasic? We first learned the term when she was on Apomorphine, as the reason for the confusion when attempting to maintain a diary of her leg shaking.

So I have commenced a flow rate reduction regime as follows;

about 0630; change from night rate 2.2 to 7.0 day rate
1000; 7.0 reduction to 6.0
1200; 6.0 reduction to 5.0
1400; 5.0 reduction to 4.0
1600; 4.0 reduction to 3.0
1900; 3.0 reduction to 2.2, returning to the night rate around bed time

The above changes have not taken into account the approximate half life of Duodopa of about 1.5 hours (according to Abbvie). I'm unsure whether that needs to be considered; I'm just trying to reduce the flow rate to minimise the dyskinesias. The FitBit is around her right ankle 24 hours a day except when showering. Although making changes every 2 hours is bothersome, it must be better than simply stopping the pump for short lengths of time as once advised.

Each morning from around 0900 she follows along with one of the three Dance for PD DVD's we bought on line. She readily does the dancing from her wheel chair placed in front of her PC now placed in the lounge room. A new DVD drive has been installed on her PC so that I could have mine back. Sometimes I play the piano pieces from the Dance for PD CD's on the audio system, at other times I let AccuRadio piano music play endlessly from her PC; I think we both find tinkling piano pieces restful.

Although she has returned to fiddling with pieces of fabric for patch-working, she has been spending a lot of time building Lego objects for which she needs a lot of help, for she has difficulty positioning pieces and even though the small diagrams in the booklets supplied with the two kits are clear enough for me to follow she has problems rotating blocks mentally and physically into place and often skips steps to become confused. Being 3 dimensional, Lego must be more difficult for her than positioning fabric pieces. She likes to sort the blocks into groupings, usually colour. The Wild Dog Carer was assisting her last Wednesday, unfortunately rushing the work and being too directive rather than allowing her to work at her own pace. I will buy a few more Lego kits.

She has no residual teeth problems from last week's extraction and her course of antibiotics is complete. Even though she was taking probiotics to prevent it, I suspect her bowels were "looser" over the past week and are now returning to unfulfilled urges and marbles.

I am feeling much better today; the infections have gone, no sneezing, minimal coughing and nose blowing at about my usual rate. And she seems more subdued, quieter.