All Alone with this


#1
Hi everyone. I was diagnosed just a week ago but am finding it very lonely.
I live on my own so no one to really chat to except a lovely friend who lives a few towns away from me.
I phoned my mum on the day I was diagnosed and although I put up a strong front (always had to) I was so shocked and scared, but the reaction I got was just as if I had told her I had toothache. That was on the Thursday and I met her and my sister both Sunday and monday nights for a local oldies bingo and it wasnt mentioned. They talked about my brother knee, my aunty's hip etc etc but NOTHING! Im not asking for anyone to run around after me but just a word would have done. just to ask what happens next or what meds Im on but Nothing. They have always been like this. If it was my sister that had it then it would be uproar with loads of help coming and she would have just lapped it up.
There are no clubs/meetings here but only in the next Town and thats 3 busses away. They are hoping to open a branch here in the future they say.
I left the docs in turmoil and that was it. Is this it? I just come home and take the meds? And plod on? No advice or help or anything. Family make me feel like Ive made it all up and Im supposed to pretend Im ok and nothing has happened.
It can be tough when you live on your own.
Sorry. I feel better now I written it all down. x

#2
hi
i'm sure you find plenty of people to talk about things here.
perhaps its just your relatives don't know what to say?
either way welcome.

#3
Hi Granny66. I am sure that you will find help and support on this forum, it sounds like you really need it. My husband has PD and we had a similar reaction from our children, it just wasn't mentioned. Our daughter said to me a little while ago that she doesn't talk about it because she doesn't really know how to handle it, she said she does care but finds it hard to talk about it.
Most people don't really understand PD, but then, there are many conditions that I don't understand. A family member has heart problems and I find it hard to ask about it, it is as if I don't mention it, it doesn't exist.
Please use the forum, it has helped me a lot. Best wishes. flo

#4
Hi granny66,
Welcome here. As others have said, I'm sure you'll find lots of support and answers here.

I'm sorry that there isn't a branch near you. But there should be an information and support worker who can visit you at home and provide you with the information you need. You can find yours here: http://bit.ly/11ken1E

I hope that helps,
Ezinda

#5
Thankyou everyone. Its good to be amongst people that understand what you are going through x

#6
I am very sorry to hear about your circumstances. Just remember the following:

1. PD is not a terminal problem
2. In many case, PD is slow to progress
3. With the help of meds, most of us lead a relatively normal life
4. I believe there is a cure or at least better medications coming sooner than later
5. The people in this forum are of great help and are even inspirational

Take care. You are not alone.

#7
Another welcome from me - we are all here for you. Dinky

#8
Hi
My husband has had PD for 11 years and he still is able to walk and do a lot of tasks. There are a lot of people out there who you could chat to on line. Facebook has a very good PD site. I received a lot of support from them. It was so good to share and know you are not on your own.
GodBless you X

#9
Hi Granny66

In every family people have their own place... the pretty one, the clever one, the one who needs looking after for example -and after many years everyone in the family treats them accordingly. In your first post you gave a big clue about your place in the family "I put on a brave face I always do" YOU are the one who always copes so of course you will have been hurt and disappointed by your families lack of support. It probably never occurred to them that you need it.

Being the one who copes may have served you well in past (without knowing you, who can tell)but it is time time to change into the one who will cope but needs help NOW.

My husband has MSA which is related to Parkinson's and I have had to learn to ask for help and it is not easy for people like us who pride ourselves on coping.

You know your family best and maybe your Parkinson's support worker can help you to see the best way of letting them see how things have changed They will have no idea what you need unless you tell them in words of one syllable

You need to decide whether to talk to them separately but make a bit of a special time to do it - its too much to take on in a busy place like Bingo. Leave that brave face in the cupboard until you can get some benefit from it.
Tell them that you have a diagnosis which has knocked the stuffing out of you and you will really need their help. Then tell them exactly what sort of help you need now. Do you want a sympathetic ear or do you want to be taken out of yourself? What do you want from them? Remember that Parkinson's is a slow disease and unless you are unlucky the drugs can work miracles so leave the future to sort itself for a while

If it turns out that they cannot understand that things have changed you will find other sorts of support as you get over the shock of diagnosis

Good luck.

#10
I was diagnosed over three years ago and have only just started telling a few people, such as my children, my brother and one or two very close friends. They have all asked questions first, then the response has become very muted and no-one ever mentions ‘the elephant in the room’ which has surprised me. However, I have been very upbeat about the condition, so I suppose they don’t know any other way to play it. I was struck by Flo’s comment regarding a family member with a heart condition: “… it is as if I don’t mention it, it doesn’t exist.”

If I’m being truthful, I don’t really want to talk about it as I want everything to carry on as normal for as long as possible, but I’m beginning to wonder if I should open up occasionally for their sake.

If you feel you want support from your family, maybe you should tell them and, as Yellowbird says, explain what kind of support you need – sympathy or to be taken out of yourself. It could be that they are struggling for ways to handle the situation and are scared of making things worse by saying the wrong thing. They might be mentioning everyone else’s ailments as a misguided way of making you feel less anxious about having PD. In other words, it could be that they actually care about you very much.

#11
Hi Granny66
its my Dad that has been diagnosed and we talk about it all the time as we find that helps I know this is the opposite to what you are saying is happening with you, but I went to see a well know TV illusionist the other day and he made a great point in his show and that is that most people are so trapped in their own head space that they don't actually consider anything else or anyone else going on around them, so try not to take it personally when you are being treated this way, hopefully in time your family will realise that you need help and support and give you it, take care :grin:

#12
Thankyou so much everyone. So much advice and support on here. I do appreciate all of you taking the time to respond to my post.

I have to say tho that the meds have made such a difference to me. I almost dont believe I have anything wrong with me so no wonder the family think Im making it all up too. I have had ME/CFS for quite a few years and these meds even have helped that!! Or maybe Ive had Parkinsons longer than we thought and not ME as was diagnosed.
Im a bit tearful this morning. Not sure why. Guess it all builds up over time. But my lovely old neighbour moved away to a new home this week and my daughter and beautiful grandsons are moving away in 2 weeks time. Not too far but far enough for me without being to drive any more. Guess thats why Im getting myself all upset.
Sorry for posting 'down' posts. Just feel better once Ive put it on paper.
Thanks again for all your messages. x

#13
Hi Granny66 sorry to hear that friends and family moving away, you say your not driving anymore? is this through the pd ? because it does not have to be My Dads biggest fear I think was losing his licence but he filled out the DVLA forms with complete honesty (as you must) and it all came back no problem, he is at an age where he has to renew 3 yearly anyway and it is all good, so bare that in mind, if not for that then try not to let it get you down and hope that local busses and if need be taxis is the way to go, again through talking to my Dad we worked out that after tax, insurance, fuel, mot etc it is probably just as cheap to run around in taxis if needed (apologies if i'm teaching you to suck eggs etc) hope that helps take care

#14

Some sound advice for Granny66 and I heartily endorse the above comments.  My husband has Parkinsons and he was diagnosed at 62 yrs.  He is now 76 and we manage.  When he was first diagnosed there were various reactions.  His son thought it was terminal until I explained it most certainly is not, some were embarrassed and could not deal with it.  One girl, when my husband's hand was shaking, grabbed it and it temporarily stopped and she said "see you can stop it if you want to!"  You have to laugh really as a lot of people behave weirdly because they are either afraid, do not know what to say or do not understand.  You almost have to give people permission to discuss it.  My husband and I always mention it like one would do the weather and sometimes we laugh and sometimes I cry.  I think it is a case of unless you have been there most people do not know how to react.  It does not mean they don't care.  We have had to get our head around people behaving in a way they wouldn't if, as you say,  it was a heart problem.  Good luck with managing your PD and your family.  I think a heart to heart on a one to one basis may be worth trying.  Take care x


#15

Hi Granny

i read your post with interest  i am so sorry to hear of your problems but i can fully relate to what you are saying, i am one of three children , i have a elder brother and a younger brother , its the sterotypical scenario my elder brother was always the apple of my mothers eye and very much still is today , although he does object strongly to it and has done everything to discourage my mothers molly coddling of him  he is 50 yrs old by the way  , i was the middle one who was always left to get on with things  and always have really had to do things for myself which is probably where my stubbornness comes from now about doing things myself even if i do push myself that bit to far sometimes , i am  quickly learning my limits  , so i never really had much of a mother daughter relationship with my mother as she was all my brother but saying that i had a fantastic relationship with my father i always was and always will be a daddys girl even though my dad died 16 years ago from cancer my dad in every possible way made up for what i did not get from my mother, in many respects my father would have been the one person i know i could have sat down with and talked about PD  with and my fears for the future  my dads reply would have been ' put the kettle on we will have a cup of tea  and a chat ' and i know i would have walked away feeling like the world had been lifted off my shoulders ,although my mother also has Parkinson's  we do not really talk about it and when i told her what was wrong with me she was very matter of fact about it  then promptly started talking about my brother

i was chatting to a friend recently , and i asked the question why everytime PD was mentioned they clammed up and would not talk about it , there response was because i do not know what to say i am scared of saying the wrong thing , so yes it can be a case of people do not know how to respond


#16

Hi Hollie. I did put a post on facebook yesterday and immediately got a message from a family member to say did I realise that the post was going down the newsfeed and that everyone can see it!! so in panic I immediately deleted that post and now dont have the confidence to post on the FB group where everyone can see it. Its a shame that its not only members that can see it.. x


#17

Just been reading all your posts. Thank you all so much. I have only seen them all because I signed in this morning after hiding away for so long. Its a shame I cant get notifications when someone kind replies to my message. I feel like you have all helped and I have ignored you all but thats not the case.
Im having a bad day today so am a bit down. Saw my neurologist on Tuesday and he has doubled my meds. well I think maybe its too much cos Ive felt worse since. At the mo Im taking 2 tabs instead of 1 three times a day. Am waiting for my doc to do a prescription to do a double dose tab but am wondering whether to ring and ask for single dose ones as before and then maybe take double morning and night and a single one midday.   Just wish there was a group near me to be able to go to but at the mo there isnt.

Anyway thanks again everyone and a Happy New Year to you all xx