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Parkinson’s disease

Parkinson’s disease

Interview with my Grandfather Malcolm, who lives in England with my Grandmother (previously ward nurse).

Was not able to note down everything said but managed to record more or less what stood out the most to me. Was perhaps the longest conversation we’ve ever had. When asked it there was anything I could do (such as staying in contact more) he replied “it is nice to talk to people”.

Is it an easy thing to talk about? I understand it must be a sensitive issue.

“No, it’s a difficult thing to talk about, but you have to expect it as you get older, what’s worse is getting it while you’re young” “life throws things at us but you deal with it, that’s life and we get by alright ” “it’s a big shock, but life becomes only mildly inconvenient. Day to day it doesn’t really affect you so much. Year to year perhaps it does ”

“It’s clearly worrying in one sense because it’s last stages are not very attractive, and all sorts of things can happen meanwhile, so it (being told) evokes a lot of different emotions.“

How long have you been diagnosed with it? (if apt where you still working at the time?)

“I have been diagnosed for about 3 years but the diagnosis itself was very unclear, 3 consultants avoided giving a diagnosis and when I did find one who diagnosed me it was rather here’s a program off u go” (pills)

What kind of symptoms do you experience/have you? Have any of your symptoms improved?

“When I stand up from either sitting or lying it’s not dizziness I experience, I guess you could describe it as unsteadiness.” (seemed unsure whether this was the best way to describe it)

Do you take medication? What kind? Was it effective?
Offer you a course of treatment (do exercise, medication to help with movement.

“If you just sit down in a chair then the capacity for exercise is decreased, so yes exercise does make a big difference” (stressed the fact there was no cure and didn’t go into details about medication. When I’m in england I see he takes many pills in the morning for the condition)

“ It’s a very slow progressing illness, so some things aren’t worth trying”
“He has a physiotherapist that comes to the house.”-grandmother

Has your doctor ever mentioned any other treatment options?

“There is no course of treatment, nothing stops aging. They really just chat to confirm their diagnosis”

Were the doctors professional/good patient treatment? Good at explaining the condition or did you have to do your own research/already knew about it?

“Yes they were good but tended to avoid saying what will end up happening, more seemed to leak out each time I went.” “I had a brother further on so I had already witnessed the progression of the disease. My other brother is a surgeon so he knew about it”

Have you learnt anything through the experience, about life, other people, yourself?

“Well (chuckles), it makes me dislike airports and crowds” oh how come? “Well they just assume you’re old and that there’s not much the matter with you so it makes you feel very unsteady”

Do you know anyone else with the condition/personally?
Meet people at clubs

“There are no organized clubs… it’s more you exchange nods and acknowledge each other’s condition. You don’t discuss it. Of course there was my brother, I know what will happen. Of course the end stages are not very attractive”

What effect has it had on your life? Do you think this would have happened anyway getting older?
“Day to day no dramatic difference, year to year perhaps it does but we don’t notice it” “Nothing stops aging” (implied that he would have experienced something similar anyway getting older)

“No not really, I can still get out and about, perhaps not the same distances as before but I have no issue with that” (I didn’t want to bring up the fact that he had be advised not to drive”

Is there anything else you’d like to share?

“Enjoy what u can while you can, it’s a big thing to deal with bit you get by. You realize that you become less and less adventurous but you don’t see it having such a huge impact on your liberty day to day.”

The interview was meaningful to me because it was perhaps the most I had talked to my Grandfather. I think I was previously too young to appreciate how wise he was or fully appreciate what he had to say. In the interview he came across as so wise and really very brave. I didn’t want to pry into the details of what he saw his brother go through, I thought it might be too far. What I found most interesting was that he still felt fully able to move around and still had the liberty to go out and do things. I know the doctor previously advised him to stop driving and he did seem unstable while I was last visiting. I didn’t even realize his brother had had Parkinson’s before and neither did my parents, also It was interesting when he said: “Day to day it doesn’t really affect you so much. Year to year perhaps it does”. The interview definitely moved me.

 

After the podcast and presentation, which method of treatment do you think research should focus on expanding?

NMDA receptor stimulants (nicotine, caffeine etc)
levodopa and managing its side effects
the relationship between ER and mitochondria
Expansion of dopamine agonists
other forms of neuroprotection (against neurodegeneration)

survey maker

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