Challenges of COVID-19 for People with Parkinson’s – one person’s experience

PD-MitoQUANT checked in with Richard Campbell, one of the PD-MitoQUANT and Parkinson’s UK volunteers, about the effects of the COVID-19 pandemic on managing Parkinson’s.

Richard Campbell

“Firstly, to give you an idea of my situation: I am 78 years old and was diagnosed with Parkinson’s disease more than 12 years ago, but like everyone else with the 20:20 vision of hindsight, I had problems before then.  Fortunately, my medication, though steadily increasing, still controls my symptoms well and I only have a slight tremor and some difficulty in walking more than a mile or two.  My Parkinson’s is progressing, if that is the right word, quite slowly.   Those who are more badly affected by Parkinson’s will have more serious difficulties, especially if they need carers to help them in this time of lockdown.

I have had no problems with the supply of my medication, though it does sometimes come in unfamiliar packaging or with pills or patches looking a bit different from normal, suggesting that my pharmacist has had to source them from a different place.  Certainly, they come with an assortment of languages on the packaging. Whether this is because of COVID-19, or the result of the UK’s exit from the EU, I cannot tell.

Consultations with my hospital doctors, regular doctor and specialist nurses have been affected adversely. My hospital consultant appointment was delayed as they coped with the first wave of COVID-19 and it finally took place by telephone. This was not very satisfactory because she could not do all the routine tests, such as seeing me walk or checking the rigidity of my muscles (the test where they attempt to screw your arm off!). A video call might have overcome some of these problems, but was not on offer. However, in the break between the two lockdowns that we have had in England, I did get a face-to-face appointment which was very useful and resulted in another adjustment to my medication to counteract increasing problems. Social distancing was no problem with appropriate protective masks etc. I have not seen my specialist nurse since the beginning of the year, and I am overdue for an appointment. There is a telephone advice line which I can use during limited hours each week, but I have not found this necessary.

I have been trying to keep up with general news and information on Parkinson’s. This has been helped by my involvement on the steering committee of a stage 3 Parkinson’s drug trial, by video calls with other PPI commitments including PD-MitoQUANT and a PPI panel originally concerned with antibiotic resistance in hospital infections but now mostly concerned with COVID-19 research. As well as this direct contact with some parts of the Parkinson’s community these volunteer roles have required me to keep up with at least some background reading.

One effect of the pandemic and the lockdowns has been on internet usage which has increased dramatically as we order food and other things online for home delivery, not to mention much more text messaging, e-mailing and video conferences for volunteering activities. COVID-19 has emphasised, though not caused, a problem I have. Because of my tremor, I cannot use a smart ‘phone for anything but basic calls. The virtual keyboard is far too small for me to hit the right letter, or alternatively, I hit the letter 2 or 3 times. This makes messaging, emails and internet searches on the move almost impossible and ties me to my home laptop with its larger, real keyboard. I have found a partial solution in a small tablet with a cover that includes a real keyboard, which, though smaller than ideal, is still better than the virtual keyboard.

Everyone agrees that exercise is valuable for those with Parkinson’s. One important form of exercise has been denied to me by COVID-19 as outdoor voluntary work for a local wildlife charity is suspended during lockdown. The work involves manual farm labour repairing fences and gates, maintaining paths, caring for woodlands and so on. Who needed weights and a gym when you were able to do something useful with the energy expended?

In summary therefore the challenges of COVID-19 are remarkably few for me, and none of the effects is very serious or threatening. Look on the bright side:  the deliveries to our door continue; the pension keeps arriving in the bank and I am not furloughed, unemployed or forced to close a business. I would, however, say again that for Parkinson’s patients with more advanced symptoms than I have, that are not controlled well by medication, the effects of COVID-19 could be much more serious.”

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