Support from a distance


#1
Hello all,

I have been searching for a place to air my thoughts and fears and this seems to be it. My mum was diagnosed with parkinsons earlier this year, and as she is in her 50's, there is a likelihood that it will turn into this "parkinsons plus" which can turn ugly. As I don't like in the UK any more, flying home, email and calling are about the only options I have for support, and I don't know if I am doing enough or if there is anything else possible for me to do. my sister lives near home and is doing great, but I find it hard to talk to her as her experience has been different to mind. the last time I was home, I felt everyone had adapted so well and that I was trailing behind. Also the people around me seem to be dealing with their own problems, and it is getting to me that it is only when I am truly upset that they fully listen without changing the conversation. I know everyone's problems are relative to their life experience, however I find myself becoming frustrated with my friends who have exaggerate their menial problems and compare their situation to mine. I don't want to get this way and I normally managed to pull myself out of it. It isn't even my illness, which increase my guilt even more. I guess I just want to know if this is normal and how other people reacted at the start.

Thank you in advance
take care

#2
Cameron
Welcome to the forum.
You don't say how long ago your mum was diagnosed or why you think her condition will progress in that way.

I was dx about 7 years ago and I can sympathise with your situation because I live a long way away from my parents and sister.

I think much of what you describe is the discomfort of a loving son who has moved away from home as so many people do these days. As your parents get older they will need help and its common for the distant relative to feel the way you do.
You say that the folk at home won't talk to you about the difficult stuff unless you become really upset - I wonder if they are just trying not to overload you with things that they think you can't help with from afar?
I can't tell you how to improve communication - maybe you should show them the message you just posted here - it might make your feelings clear to them.

I think it is common for people to feel guilty about being upset about the Parkinson's of a loved one. I think its important to realise that the condition affects the whole family - not just the PWP.

No easy answers but I'm sure you will find support and insights from the boys and girls who come here.

Please keep posting and let us know how you get on

Elegant Fowl

#3
Please can someone explain this " as she's in her 50s its likely to be Parkinsons plus" What is parkinsons plus??

#4
Hello Cameron and welcome,


I am sorry to hear of your mum's condition and know how difficult it is being a close relative as my husband has had pd for almost thirty years and our son was only ten when his dad was diagnosed and it just goes on. I wish you well in coming to terms with it all, it certainly is not easy.
Mandypike Parkinsons' plus as far as I know can be things like PSP or MSA as well as other conditions it just depends what symptoms there are. None are very nice and usually more rapid than PD.I am sure it will be on the web site or google it.
best wishes
vivian

#5
Sorry mandybike, got that wrong didn't I
vivian

#6
Hi Cameron again,

Please don't feel bad about getting frustrated it is normal for us all as this condition is so complex and full on you can't forget about it.
I remember feeling upset when I saw all these people about fifty coming back off holiday whilst I was collecting for PD and it just hit me that we should have been having some of the best times of our lives, but you just have to get a grip and carry on, but that is not to say we still don't have these feelings. I have been disabled myself since I was 29years old I am 66years old now and just yesterday I went to get diesel for the car and they said they couldn't serve me can I come back about two hours later and I just felt I could have balled my eyes out it was the last straw, I still have problems because I use a wheelchair and can't serve myself, its like going to the theatre you are still expected to sit a couple of rows away from your husband/friend because they don't have seats next to wheelchair spaces Who on earth would do that certainly not able bodied people.
Keep your chin up I am sure you are doing what you can.
best wishes
vivian

#7
hello vivian, elegant fowl and mandybike,

thank you all so much. i know there is no easy answer but knowing i am not the only one is such a comfort. your tales are heart-warming, yet also make me feel so sorry that your lives have been turned upsidedown so drastically. i hope you have the support network around you that can help.

parkinsons plus is a strain that a quiater of people get and can lead to horrible outcomes which i try not to think about. as my mum is relatively young, they say the risk of her going down this road is higher than normal. i think it just means that along with parkinsons she will more than likely develop some other disorder. however she is responding well to the treatment so far so keep fingers crossed.

i will certainly think about the advice you gave, and hope that time helps. it has been a busy and good week!

Wishing you all a lovely weekend!

#8
Hello Cameron,
I am glad your mum is responding to the medication that is a good sign as people with some of the nastier conditions don't usually respond to dopermine, keep your fingers cossed.
best wishes
vivian

#9
Hi Cameron,

I can simpathise with your situation, all though I dont live in another country I do live a good drive away and it's hard to be there for my Dad like my sisters are. I also feel I see my dads condition developing more than my family as I don't see him every day so I notice the changes more. I try to do what I can but the distance is a problem. I don't really have any thing to add just that I completly understand how you feel.

#10
Hi Cameron
Welcome to the forum. I do not envy you being in this situation. Rest assured that your not the only one. It is so easy for others to criticise but you will usually find that those that criticise are usually those healthy types or selfish.
There is no easy answer and its a problem that will sit on your shoulders a long time. You yourself will be your own worst critic as you will always wonder whether you are doing enough. I am sure that your mum appreciates your mental support and recognises the difficult position your in. Keep your spirits up and when ever you feel low, just give the forum a call. As you can see from previous answers, there is a great bunch of people out there, always with a wealth of experience both as carers and sufferers. Just keep your chin up mate, its never quite as dark as it looks.
Cheerio

Chunky