Between Dec 2012 and Feb 2013 (just months after my diagnosis of some form of Parkinsonism, probably PD, I began working with a speech & language therapist and a physical therapist on an ad-hoc basis. Both said to me after three or four appointments over the course of 2-4 months that I was doing very well, and should just continue what I was doing (exercises, monitoring the symptoms), --that there wasn’t really any need to continue meeting regularly, but that they would be available if I began to run into new difficulties… I’ve gone back to both a couple of times in the course of the past 4 years, but each time it seems there is not yet need for ongoing therapy, but for occasional ‘reality checks’ and suggestions/guidance on ways to cope.
Sept 2013: I who have never been one to “pop pills”, and who generally get over a headache, fever or cold without taking any pills at all, began taking medicines for Parkinson’s with the consciousness that I would most likely be taking medicines daily for the rest of my life. It was a momentous occasion in my life, but I took it on with great peace, and from the first have implemented something I learned from the chronically ill in Peru: to pray when taking medicines, just as one prays before meals, but in this case to minimize the deleterious effects and to dispose one’s whole being to calm receptivity and to maximize the beneficent virtues of the medicine in question.
I’ve added to that each morning (once a day) a prayer for all those who have no medicines (IDP’s, refugees, people in a state of war or persecution, or who live in abject poverty or under corrupt governments, for those living isolated from health networks and those under any form of bondage (physical, psychological, behavioural, chemical, sexual, domestic, criminal, civil, religious, military or para-military…) who have not the luxury of looking for or accessing specialized drugs. Then I pray also for all of us who are blessed with having the medicines we need: those with epilepsy, schizophrenia, multiple schlerosis, cancer, AIDS, heart conditions, glaucoma, etc. (remembering the persons I know with these conditions), and lastly but not least, my fellow PD patients, here and abroad.
Almost from the start, long before the local PD support group came into being, I began gathering a group of friends (at first mostly Catholic religious and mostly in the US) which I called my “virtual support group” with whom I could share by e-mail experiences and questions, concerns and joys of our parallel paths. But it soon diversified to include priests, sisters and laity in different parts of the world (USA, Kenya, at one time S. Sudan, Philippines, Peru, Chile, Ireland, Rome) but all people of [Catholic] faith, all facing similar challenges with PD: a loose network of people united by frequent prayers, occasional letters, sharing of news, and mutual support… I’ve had the occasion to visit with several of them at least once, and it was indeed a blessing!
I was already looking for, asking about, and thought of trying to begin, a Parkinson’s Support Group in Nairobi back in May 2013; finally, at the beginning of 2014, we began one thanks to the coordination of a meeting by a dynamic Speech & Language Therapist, Emma Shah, who worked with several PD patients, and convoked a good number of them for a first meeting at Hansa Patel’s house:
Feb 2014: Beginning of the Nairobi “Parkinson’s Support Group”: solidarity, support, friendship, formation in understanding the disease, & helping others. It amounted to the discovery of a new field of ministry over the year 2014: being in some way the coordinator of an incredibly inter-faith, inter-cultural, a very diverse group. It has involved meetings, friendship, newsletters, interviews, diverse activities… (In the photo below, from January 2015, those of us seated have PD; those standing are carers, family members, friends and health-care professionals.)
The group has had a slow but steady growth over the past 3 years; now we normally have about 25 people at each monthly meeting, and often 1-2 new people. Three members of the group have died and some have moved away; the organization of the group has come gently and rather sponta-neously. We now have a 7-8 member “planning committee” to guide the further development of the group. APDF (Africa Parkinson’s Disease Foundation), one of the few African PD organizations, was begun by a lady who’s now a friend and colleague of ours, whose dad had PD some 10-25 years ago, when it was much less known than it is today…
My perspectives on PD gradually became less ‘apocalyptic’ (less focused on death, on future losses, etc. and more focused on living with PD). I wrote in my report to my neurologist in Nov 2014:
Overall, I’ve noticed that my ‘PD psychology’ has shifted and become less ‘apocalyptic’ (focused on dramatic end-time scenarios of the disease) and more incarnational (focused on living to the full in the present moment).
At one point (2013-2014?) I was thinking that in a couple of years I might be going to our priory in Washington DC where there’s a “Center for Assisted Living. Dr. Hooker was convinced that it was too soon to talk about such options; he bade me –not with these exact words, but with this sense– “don’t ‘foreclose’ prematurely: you’ve got a lot of life, a lot of productive years ahead of you.”
But in mid 2015 I was thinking seriously of resigning from formation work: I’d already submitted a letter to our vicar to this effect in May 2015. Dr. Hooker (my neurologist) was not really in agreement (he felt it was too soon; that I was still very capable of working)… When I thought of our vicar (regional superior), 25 years older than me, still in the ‘saddle’, with a lot more ‘on his plate’ than I have, I withdrew my letter of resignation the very day the council was to meet to consider it, and rather asked for my assistant to be given a larger portion of my responsibility, -a further step in the transition to a new generation of ‘formators’.
On being proactive: I believe in participating in clinical trials to contribute what I can to PD research; most of them however require residence near the study center (usually a university hospital or medical research center). But I keep my eyes open when new clinical trials come up, and I’ve found two in which I’ve participated up to the present time: an innovative study using a smartphone app for active tests (5-10 min. daily) and passive monitoring during the day with a sort of medical GPS that monitors movement, stride, location, social interaction (number of calls / SMS). I did both parts for about a year (since May 2015), but then I found that the passive monitoring all day long overloaded my phone memory and wore down the battery too quickly, so my phone often stopped working. For this reason, when they asked me if I’d like to continue to participate in an extended program I decided to do just the 5-10 minute active part which measures through the phone app voice, balance, gait, manual dexterity, reaction time and tremor!! And a second clinical trial that’s not dependent on nearby residence is the Fox Insight ‘longitudinal study’ of PD development through symptoms which amounts to filling out a very extensive on-line questionnaire about the experience of PD every 3 months (since Aug-Sept 2015)… In addition I have been doing my own monitoring of sleep, exercise and voice strength/duration with a weekly sheet of daily measure-ments for nearly 3 years now, in the hopes that it may some day serve to clarify the relationship between some of these elements… Plus more sporadic measuring of several other indicators from time to time…
On 1 Dec 2013 I began taking Pramipexole (Mirapex, Pexola), recommended by my neurologist, and temporarily gave up driving (“for Advent”) due to possible dangerous side effects, but having seen none at all up to Christmas, I then continued driving, but 1 ½ years later I had scary experiences of falling asleep for about a second and a half while driving in May 2015: so I consulted my neuro-logist, who said there were only 2 responsible alternatives: either give up driving, or stop taking the medicine. But since I was happy with the overall effect of the two medicines I was taking (and still take), I gave up driving without fanfare or remorse. In my case it was not a very difficult or traumatic decision, because I didn’t use a car very often even before this decision, preferring public transportation or walking, where possible… and now with the brethren also often offering to drive me places, I’m well cared for… and well ‘connected’.
There was also what seemed to be a heightening of the inclination to a particular compulsive behaviour I’ve experienced in some periods much of my life, and so I’ve had to renew my struggle to overcome it… (since Sept 2015) – that’s one of the side effects of Pramipexole. But it’s more manageable now.
First semester of 2016: I noticed fairly significant worsening of symptoms: voice, especially my posture (sitting, standing, & walking with a strong tendency to ‘hang my head’ like when dozing off), and finding administrative multi-tasking increasingly difficult. I added a third medicine, Synemet (Levodopa- Carbidopa combo), at my neurologist’s suggestion in Aug 2016, and it began with very good results at first (“spikes”), and then settled in to a more stable but still much improved state, such as I had back in 2015…
I peacefully came to a decision to renounce formation work (May-Aug 2016) --not only due to my health reasons, (primarily the work load and multiple things to keep abreast of), but also because there was a young, very gifted E African Dominican ready and qualified to take over the post). But, I told people, I’m not “retiring” - - I asked for a change of assignment, not to be relieved of work. Assigned to our parish on the other side of Nairobi, I finally moved in the 2nd of Nov 2016. Here in the parish I discover that I am fully as busy as I was in the formation house, but thankfully have almost no administrative responsibilities… I’ve had time to explore the neighborhood for about 2-3 miles around, and have learned how to get to and from places in town, and back in Karen…I’m enjoying giving some enrichment courses to the laity of the parish, including the most enthusiastic one, on married saints and holy couples, which I’ve been investigating now for some 18 years (with no signs of stopping) and which I’m hoping to be able to publish before long. I’ve had some days of recollection, confessions, and am overseeing the cataloging of our small friars’ library. We Dominicans in the parish are a community of 4 priests who get along well together and complement each other in talents and perspectives. I’m the elder of the group by nearly 20 years!
And that brings you up-to-date on my situation with regard to Parkinson’s Disease (and many other aspects of my life)
The Nairobi PSG, September 2016
Fr. Kevin Kraft OP
3 May 2017