A Desperate Daughter

Living with Parkinson's Carers, friends and family
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Hi!

My dad was diagnosed with Parkinson's late last year at the age of 52. He has since received several treatments. He has had counselling for depression that has since stopped because "they have done all that they can and now it's up to him", he is on antidepressants and dopamine tablets (I'm not sure of the name). He is unable to work and has recently got a dog to keep him company in the day, this has made him a lot more talkative and more like his old self but he is far from the person he used to be. I'm not sure whether there is more that can be done for him.

He started getting symptoms a few years ago but he has declined much quicker that any of us expected over the last year. He has gone from having one shaky hand to his whole left side and now his right hand shaking, tripping when walking, being unable to put on his socks, jacket and shirt on without assistance, experiencing incontinence at times, and most recently being unable to shave. He also has difficulty expressing what he wants to say, forgets words when he's speaking, and forgets things that have recently happened which obviously causes confusion.

We were told when he was diagnosed, the only time that he has seen a specialist, that it would progress slowly. No one expected it to be like this. We thought we'd have years to see these types of symptoms. While his depression is better, it is far from gone. When he started taking medication, we were informed that we could expect his symptoms to lessen and he would return to what he was like one year prior. This clearly hasn't happened. We have waited and waited for him to start improving but he continues to get worse.

My questions are, does this sound normal? What can we do if it doesn't? Who can we ask for help? There was a great support system in place when he was first diagnosed but he seems to have been pushed to one side and no one in the family knows what we should do now. We don't know where to go for help.

Finally, I am living abroad and am unable to help my mum who is dealing with this pretty much by herself. I try my best to support her but there's only so much I can do via FaceTime. I will be moving back home next year to help but she needs some support that is closer to home now. What can I suggest to her? What have you found to be most helpful? I'm desperate to help them both!

Any advice would be greatly appreciated!

Laura
 

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Hi Laura. I am sure that other people will be able to offer very practical advice but perhaps you could phone our helpline. Parkinson's is a very bewildering condition, symptoms can vary so much but hopefully by coming on here you have made the first step for help. Best wishes  flo

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Thanks flo! Ill do that. Can anyone else offer any advice?
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Hi Laura

Only by phoning the helpline would you be able to get some concrete advice on how to hopefully cope with your problem. Parkinsons effects so many people in so many ways, it can also progress quicker in some  than others. Nobody knows why. I was diagnosed in 2011, started on meds 2012, and my PD is progressing fairly slowly but we learn to take one day at a time. I am sorry your father has not improved at all with the meds he has been prescribed, perhaps he needs a different one. The only thing I can suggest also is to contact the PD nurse for your dads area somehow from where you live (via internet ??) and discuss his meds with her/him, with a look into putting him onto different meds.

Hope you manage to get some sound advice

Regards Sheila x

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Hi Laura,

Very sorry to hear your situation. 

My husband has had the disease for twenty years. At first he only experienced mild symptoms which increased as time went by, until this last year, when decline has been dramatic. At 72 and not in brilliant health myself, I began to find things quite hard so I contacted AgeUK. They gave me time for discussion and advice and respite care homes' phone numbers. I also spoke to our GP, who put me in touch with a social worker, occupational therapist, physiotherapist, and now husband has a morning carer to shower and dress him, which is better, as we had a number of falls when I was responsible for the personal care. There is also a district nurse, who keeps a check on us both. Our GP arranged for all this and it has been good from both the useful angle but also mental support. Just to know someone is there for you makes you feel less alone and vulnerable. I hope your mum finds the same help. She must be glad of your support and care. You sound a caring person.

regards,

Sue.