My mom was officially diagnosed in 1994 and passed away in 1997. She had ‘symptoms’ that, as JP Sutherland shared, could have been mistaken for a number of diagnoses and thus there was some time spent in trying to figure out what was the best way to ‘deal’ with my stubborn Scottish mom. Mom had had Polio at 16 and so at first they thought it was Post-Polio Syndrome. Then, possibly mini-strokes or TIA’s because both her parents had had strokes. It wasn’t until the acute lethargy of her limbs really set in (legs first, balance, etc.) that they finally concluded that it was definitely Parkinson’s. She had what might be called a very ‘severe’ form in that it struck at both voluntary and involuntary muscles….resulting in much laughter, at times, as her upper legs just wouldn’t support her when trying to rise from a chair looking very much like Carol Burnett and Tim Conway portraying the elder gray-haired couple in rocking chairs (humour truly was the best medicine) ….but over a very short period of time, devastatingly, in very few opportunities to ‘get used’ to one stage before another would set in. Amazingly enough, and unlike some forms, mom was clear-minded and lucid to the end - well, perhaps not so clear as she latterly was on morphine for the pain of immobility, also having arthritis she couldn’t automatically do all those ‘normal’ little movements that let you ease your muscles at rest or sleeping! I did ask mom once when, in the middle stages, she could still speak, whether she would prefer to ‘not know’ what was going on around her, not see struggles of the family to support and keep up the ‘game face’. She told me that “as hard as it was to know what everyone was going through to ‘be’ there for her, that she much preferred the knowing…and knowing the family right through to the end”.
(Mary Georgina Bosiak [nee Fleming] 1927-1997).
There are two excerpts that I found to share – very much in keeping with what JP Sutherland has shared. So, on to mom’s ‘bit’ in diary form. She typed:
Earlier 1997: After a gathering at the house: “I am positively spoiled all day but not being able to assist in any way makes it a very heavy load on Larry”. [my dad]
His load is particularly heavy these days, instead of putting me straight into a nursing home, he has taken on to look after me as best he can. An almost impossible task that only the most dedicated would do.
This state of affairs did not come to be overnight, and rather comical in the beginning… a nudge from one of the horses would have me on my back with a resounding ‘whump’, a bump in my path and down I would go, just feeling incredibly awkward or taking a turn too quickly I would come down, not gracefully either, but like a tree felled, stiff and rigid.
About the middle of the third year I went for diagnosis. The specialist must have been mildly amused at my reaction when I said, “Oh is that all’. As you can tell, I still had a lot to learn. Parkinsons is slow, relatively, but relentless. Movements slow down, writing gets almost beyond comprehension, in all a person becomes uncoordinated in every way. Not everyone has the same symptoms, in time though, we all get most of them. One of the last things with me is the ability to speak, but my voice, to all intents and purposes is lost. One thing I have not had is unmanageable tremors, but they are definitely worse of late.
So, your world changes, and you change, too. I am introduced to the wheel chair today, laying aside for short distances, Harriet the Chariot, my classy Walker which is a big boon.
One device I have found invaluable is Larry’s computer, I use it for all my letter writing and for this story. I’m afraid I’m no great shakes as a typist and nowadays my spelling is questionable although memory is still quite good and rest of brain in reasonable functional condition.
Like an infant one also goes back to pureed foods and lots of milk products. ….. [My dad had to do the Heimlich Maneuver numerous times for my mother as her swallow reflex gradually diminished and she was unable to swallow anything of consistency. My mother once told me that she hadn’t known how incredibly strong and dedicated my father was until this challenge to mom’s health became a challenge for them to share. She was so proud of him and thankful for him. ]
August 30th 1997: My journey should be coming to an end soon, …, thoughts come in the long nights and flit away before I can record them in the dawn of the new day.
Unfortunately, some of these incidents that have got on my memory list are things associated with Parkinsons and the ‘pickles’ I have got into. Good friends are always eager to help, right? Of Course. Having got to the stage of being helped from chair to chair I was at one of our lovely birthday parties that our ‘group’ put on. Call to table, two of my more stalwart cronies [they also in their late 60/70’s] take a wing apiece, stand me up, and proceed to literally carry me at shoulder height over to the table, me with toes barely skimming the floor.
I write notes, voice distorts but writing ends up, when read out, to say such inane things like, ’have you bathed your guppy lately’ …substituting g for p. Well, my writing never was anything to write home about. Or I can find myself frozen to the spot when negotiating a turn. Feet just refusing to move no matter what I ‘will’ them to do. ……
[Thank you for letting me share this with you. The stories you have of your BAHA are so precious and obviously have inspired you to be who you are today.)] Janie Roelants
(Mary Georgina Bosiak [nee Fleming] 1927-1997).
There are two excerpts that I found to share – very much in keeping with what JP Sutherland has shared. So, on to mom’s ‘bit’ in diary form. She typed:
Earlier 1997: After a gathering at the house: “I am positively spoiled all day but not being able to assist in any way makes it a very heavy load on Larry”. [my dad]
His load is particularly heavy these days, instead of putting me straight into a nursing home, he has taken on to look after me as best he can. An almost impossible task that only the most dedicated would do.
This state of affairs did not come to be overnight, and rather comical in the beginning… a nudge from one of the horses would have me on my back with a resounding ‘whump’, a bump in my path and down I would go, just feeling incredibly awkward or taking a turn too quickly I would come down, not gracefully either, but like a tree felled, stiff and rigid.
About the middle of the third year I went for diagnosis. The specialist must have been mildly amused at my reaction when I said, “Oh is that all’. As you can tell, I still had a lot to learn. Parkinsons is slow, relatively, but relentless. Movements slow down, writing gets almost beyond comprehension, in all a person becomes uncoordinated in every way. Not everyone has the same symptoms, in time though, we all get most of them. One of the last things with me is the ability to speak, but my voice, to all intents and purposes is lost. One thing I have not had is unmanageable tremors, but they are definitely worse of late.
So, your world changes, and you change, too. I am introduced to the wheel chair today, laying aside for short distances, Harriet the Chariot, my classy Walker which is a big boon.
One device I have found invaluable is Larry’s computer, I use it for all my letter writing and for this story. I’m afraid I’m no great shakes as a typist and nowadays my spelling is questionable although memory is still quite good and rest of brain in reasonable functional condition.
Like an infant one also goes back to pureed foods and lots of milk products. ….. [My dad had to do the Heimlich Maneuver numerous times for my mother as her swallow reflex gradually diminished and she was unable to swallow anything of consistency. My mother once told me that she hadn’t known how incredibly strong and dedicated my father was until this challenge to mom’s health became a challenge for them to share. She was so proud of him and thankful for him. ]
August 30th 1997: My journey should be coming to an end soon, …, thoughts come in the long nights and flit away before I can record them in the dawn of the new day.
Unfortunately, some of these incidents that have got on my memory list are things associated with Parkinsons and the ‘pickles’ I have got into. Good friends are always eager to help, right? Of Course. Having got to the stage of being helped from chair to chair I was at one of our lovely birthday parties that our ‘group’ put on. Call to table, two of my more stalwart cronies [they also in their late 60/70’s] take a wing apiece, stand me up, and proceed to literally carry me at shoulder height over to the table, me with toes barely skimming the floor.
I write notes, voice distorts but writing ends up, when read out, to say such inane things like, ’have you bathed your guppy lately’ …substituting g for p. Well, my writing never was anything to write home about. Or I can find myself frozen to the spot when negotiating a turn. Feet just refusing to move no matter what I ‘will’ them to do. ……
[Thank you for letting me share this with you. The stories you have of your BAHA are so precious and obviously have inspired you to be who you are today.)] Janie Roelants
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