Keeping spirits up.


#1

My sister was diagnosed early 2018. So far things have been not too bad, but it is scary. She still manages to go singing and the consultant said that she should walk as much as possible, as the legs stimulate the brain’s response. That is going well enough, but the aches and pains in the back and long bone get her down and the chronic fatigue that seems to go with it. We don’t know if that is really the condition or the medication, or both. She has tended to read things up about it and fret, but now I have told her that she can tell me what she wants to know and I will read it and filter the information. It seems to be the best way to cope, at present. Our mother had the condition and we didn’t realise that the aches and pains she spoke of were related to Parkinson’s until my sister was diagnosed. Nobody told her, or us. We don’t want to pretend it is all positive and deny the difficulties, but we want to look for the silver linings in life, as much as possible. My mother had it for years and never lost her sense of humour. My sister managed to overcome her resistance to finishing her fantasy story and self-published it on Amazon with a little help from a mate. She doesn’t expect fame, but it has given her the satisfaction of achievement and so does a walk in nature. How do others keep their spirits up, or is it very hard?


#2

It can certainly be hard but you have to make the best of it. Sense of humour will help. As has already been said on this site 'there are worse things than Parkinson’s Disease. I have cared for my mother, who has MND, for more years than I care to remember and have watched her slow decline from someone who was quite active to her current almost completely immobility status - she only has the use of her left arm and left hand. Last year when I was examined by a neurologist as a result of a limp I gave a huge sigh of relief when he said ‘It is definitely not motor neuron disease’. Shortly after this he said ‘I think you have mild Parkinson’s Disease (lucky for me it is only mild)- but it can be controlled’. Certainly things could’ve been worse. You may well have days when you feel at a very low ebb - very depressed. When you feel depressed it is very easy to list the things which have ‘got you down’ and plummet into despair - but, an hour or two later or next day you may feel so much better even though your situation may not have changed. You have to live for the better days - and try to make the best of things. Best wishes to you and your sister


#3

Hello Nelli the is tom from the USA. I noticed you talked about your sister’s diagnosis early 2018. I am no doctor but I have dealt with PD for some time. The internet will drive a person crazy. Parkies is not a one size fits all disease. The symptoms vary as well as the severity of those symptoms.
What I found is that keeping a daily log of symptoms, time they occur , when and what my meals were, and how I slept that night. (when you had to get up during the night and the reason for it)

Bring the log with you to the next app. for the person in charge of your PD health care. This gives a very clear picture how your medicine is working and if more should be added. Or even she needs to try a different kind.
Plain old sinemet has worked the best for my pain. (Cramping)Also for most of us PD effects our non-motor part of living. Depression and anxiety due to a possible chemical imbalance. This again is where the log comes in handy.
In my case I avoided medicine for depression and anxiety. Not to say I don’t have bad days. Any one completely healthy or not. If you shut yourself off socially and do not leave the house depression and anxiety win out. Kinda like the Nike shoe slogan. (just do it) Your sister must convince herself PD is not the end of everything!
One thing I have driven in my head is. Out in public I might be slower,shake, walk different, speak different and have different look on my face. If I go about life that the previous things mentioned are not a problem. Other people notice my deficits far less and in a very short time no longer pay any attention.
I hope this helps. PD only wins if you let it!