You are in exectly the right place and will I am sure get lots of comments .

hi i,m 62 and fairly new to all this - i was diagnosed in march this year and it already seems like a prison sentence!! My sister (from Adelaide,South Australia of course) is visiting me but is currently in Switzerland around Mt Blanc. she goes back to Aussie next month. Other than her I'm fairly much on my own - my husband died 9 yrs ago, my daughter lives (with her boyfriend) near Oxford and my other siblings are in Aust too.

I'm quite obsessed with PD!

Hi. A few months ago I met someone through a daing website. He had the decency to tell me ha had PD and also condromalacia. I wonder if it is a common combination or very bad luck.

He is becoming a very special friend but I am terrified of this disease. I am going to explore this forum to see what kind of scenarios to contemplate.

It is really nice of you guys to share this and make it less by being more out there.

hi aussie1234,welcome to puk forum,im ali been dx with pd for 11 half years im 43 years old.lots of good surport here on the forum,and lovley friends to be made.exerlent surprt from the helpline,number top of this pageaussie,wot a place,so beautiful, very lucky to be living there.im very sorry to here about hubby,big hugs to you xthere so much information to take in on puk forum,and on puk website,you say you obessed with pd,lot of reading for you thereive been dx 11 half years,and im still learning new things aussie1234,i guess as resurch moves forward,i and others will be glued to the forum and website,im very very intrested in parkinsons,i do alot of fundraising for them to,everything helps to try find the cure.

hi anagogar,welcome to puk forum,there is alot of good surport here and very nice people to meetim ali,ive been dx with pd for 11 half years.anagogar it very nice you have met some one on a dating website,good luck to you,but im a bit confussed you say he said you had parkinsons and conaromalacia,i would surgest to got to general practioner and be refired to a neuroligist to have parkinsons confirmd anagogar,then you have a complete deffo diagnoseand aslo so conaromalacia this is problems with the underneath of the nee cap,most runners get it,wear and tear of cartlige and bone,and can be very painful,but can be treated,agin,a xray will confirm this.im sure your aware of all of this anagogar,but you dint say ,you just said your friend said you had parkinsons.if you have done all of this that i have surgested anagogar,i apoligize to you,it just wot you said that has confussed me.anyway ,i hope to see you around,and like i said lots of surport here,and a very good helpline if you need to chat privatly.good luck

Hi Ali J, Ta for greeting! Just to clear up one thing about me - I don't live in Australia, I live in england (and it is good here!) - came here a long time ago and met my husband and stayed! Sorry to hear about your scooter...

o yah ,sorry i miss read it,ur sister lived there,sorry.and thankyou for your thoughts bout me and scooter xx

Hello ausie1234,

Welcome to the forum and the family of parkinsons

Have you tried joining a branch of PDU as they are very helpful and also you get to know a lot of people from all walks of life. We started a branch many years ago and we have made some wonderful friends over the years, it is also very much more relaxing to go out with a group who understand how you feel, you can find a branch near you on the web site.
best wishes
vivian

Hi
I have found reading lots of the posts on the forum really useful. My Mum has PD and was diagnosed about just under 30 years ago when I was only 15. She is now 75 and has managed with very little problems until about 5 years ago when her symptoms got worse. She started falling over, freezing, using a stick to walk. In the last 3 years she has started to have non motor symptoms which for her are alot worse than her motor symptoms. She has good days and bad days with her walking but consistently has nightmares where she thinks she is trapped somewhere, halluciantes seeing people, cats and dogs. All of these are very frightenening for her. She is beginning to become confused and seems to lack logic finding some things she would previosly have had no problem with difficult to understand. She forgets things and can become very aggressive verbally when she gets distressed. My Dad has been caring for her for the last few years but is nearly 80 himself and has been in and out of hospital himself. He is currently in hospital having tests because has lost alot of weight, legs swelled up andgenerally feeling unwell. It has been difficult for him over the last few years and having cared for my Mum for a week on holiday recently and having her at our house and caring for her whilst my Dad is in hospital I have realised how much he has doine and how exhaustin g it is. She is constantly demanding help with something and finds it difficulkt to sit still seeming very agitated all the time. I have 3 children and caring for her and the children for the last couple of weeks has been absolutely exhausting. My Dad has become very frustrated as Mum shouts at him when hallucinating and criticises everything he does.Their relationship has been volatile recently to say the least. He can be frustrating at times but he is doing his best. Now he is so ill himself and can hardly walk it has finally reached crisi point. They live over an hour away from me and my family so it has been hard to help out regularly but they have had carers going in twice a day. My Dad just isn't coping and wants to go into a care home himself due to his failing health. He weighs 6 stone!!!! Mum is very resistant but did agree earlier in the week after visiting a really nice local home. She is now changing her mind and I was up last night with her having terrible nightmares thinking she was in the home and no one came to help her. I tried to calm her down telling her I was there and she was at my house but she woke up upset this morning and has been saying she isn't going to the home. I feel so terrible as I don't know what to do to help her. Dad just can't cope any more and I have 3 children and work 3 days a wek aswell. have tried to emphasise the positives of being near to me but she is angry with me, despite her agreeing to it. She has episodes of delusions where she thinks she could look after herself and live at home alone saying her friends manage it but forgets they don't have Parkinson's. It is so difficult as her thoughts are irrational and illogial but I hate to see her so frightened and upset but don't know what else to do.
Would love to hear of people in similar circumstances and any suggestions of how to handle this very difficult situation.
Tuppence
x

Hello Tuppence,
So Sorry to hear of your parents problems, they are quite normal for the period of time your mum has had PD and she has been fortunate to be able to go on so well for so long.
What needs to be done is a case conference with the social worker and other professionals and if possible the P D Support worker/PD Nurse and yourself.
I think it would be a good idea to speak to her Doctor or Nurse to see if her medication can be adjusted to relieve some of the nightmare's and confusion.

I think staying at home is now not really an option, although some area's can manage a package for them so it always worth asking. There are problems with different carer's coming in if your Mum gets upset with too many different faces, so in a way the care home would at least have constant carer's and you would not be called on when ever they have staffing problems, we had 80 different one in two years.
Sorry to say you will still need to keep a close eye on things if they go into care finding a good care home is not easy so if you do well done!
AS much as we like to care for our relatives there comes a time when it is too much strain on the remaining family to continue, I had to make this awful decision for my husband almost two years ago because of his behaviour being out of control do to his long time of having PD and medication, it nearly broke me.
Nothing is as good as you would like you can only do the best you can, at least you would have peace of mind that they were in a safe place.
I hope that helps
best wishes
vivian