Family/friends disapear


#1

#2

hello nostromo

lovely photo!  no message?

Aberwells


#3

Oops....I think it was a bit early in the day and my brain did not connect to my laptop..

In November 2012 I went to my doctor with various symptoms. She referred me to see a neurologist the next day. A few weeks later came the MRI scan and then began 9 months of testing including bloods, vision, nerve and muscle conduction, a lumbar puncture and finally the datscan. I was diagnosed with young onset PD in September 2013.

During that time and post diagnosis I have become estranged to my father and my sister and had to let go of a 20 year friendship.

I feel less in denial about PD as I do with family and friends reaction (or lack of any reaction).

Has anyone else found that people close to them have shown their true colours?


#4

I think I posted this on the wrong area of the forum.

Note to self- never post on the forum early on a Sunday morning!


#5

Hi  Nostromo. We found that some people drifted away and our 2 children just blanked it out. It has taken a long time for them to understand slightly. Their Dad looks fine, so he must be...mustn't he? I have been having memory problems (PD?) and that is a real conversation stopper or they tell you that only that very morning they had gone into a room and didn't know what for.

Our local PD group has brought us new friends who do understand and you get to know how PD symptoms vary so much. No wonder it can take a long time for a diagnosis.Best wishes.   flo

 


#6

 

hi ya

ive found 

Some friends do drift away, but that's the nature of freindships i guess you pick them up again at another time, a couple of other's told me what they thought it was whilst watching me and they were right before i was diagnosed,  on the whole i've been surprised how most freinds have taken it with act's of kindness and support a helping hand in the future if i need it, but recogisin i'm still trying too be most independent right now.

Familys a diff matter i spose,  i told my mum she'd have too accept whatever it turned out too be. a auntee said it can't be PD it's not in the family. and my gf deverstated because she is ill herself. i guess it is my family most that need too understand what PD is too come too terms with it rather than freinds.

 

 


#7

Not to bad my side , My mother when i told her was like ok  there was not much of a reaction from her but a couple of weeks later she discovered she also had pd so is a little more understanding , my sons had a bit of a hard time i think they had a double blow to contend with there mother and grandmother had the condition and then my neurologist asked me to discuss with them the possibility of genetic counselling / testing  so a lot for them to deal with i just gave them all the literature i could for them to read and  they seem to ok with it now

As far as family goes  nothing really has ever bben mentioned i have on the odd occassion been out with family members who comment on my shaking which does make me a bit uncomfortable  but on the whole no real negatives


#8

Hello Nostromo,

 

Well what a handsome young man you are with a smashing smile to go with it.

I am really sad to hear your families reaction but hopefully they will come to terms with the news and be there for you. I can remember one of my family saying to my mum "Well its okay he only has to keep taking the tablets" and still my husbands sister who was a mental health nurse doesn't bother with him not even to ring and find out how he is getting on. 

My love for my husband is as strong as ever as his is for me even though we have been through forty years of parkie with many complications including now him having to be looked after in a nursing home an hour away from me.

My husband acheived so much during his years with PD including running a marathon winning many prizes for his photography and hanging baskets amongst many other hobbies and still can beat the carer's in quizes and his knowledge of almost everything you can think of, they help him make cakes with a lot of fun and were trying to teach him to break dance the other day which caused lots of laughter especially as he has difficulty standing for anytime and his once strong body is quite frail with nobble knees from falling down so much.

There are of course many very difficult times when he loses the plot and turns his room upside down and gets quite stroppy from time to time but his lovely kind nature comes through too.

Please give yourself a pat on the back and keep doing as much as you can to make the most of life and keep every part of your body and brain in top form with a good deal of stubborn grit and you will do well.

People have to remember that this dreadful disease could happen to anyone of them as they say the shoe could be on the other foot then what would they do!.

Love vivian


#9

Hello

Thanks for all the replies. Unfortunatley my only family is my mum. She's been wonderful since i was diagnosed last year in September. In March this year my mum was diagnosed with secondary bone cancer. I am estranged from my father and my sister...I broke contact with them both during the time I was going for tests, they have never given a damn about me so in the long run it causes me less stress having them out of my life, as would do having them in it. I can't manage any more disappointment. Most of my friend's have been great, a couple have been far from supportive. It's tricky to adjust, I find it hard to let go of people but at the same time I have had to.

Anyway, I appreciate the response here. Aberwells and Vivian, thankyou for the compliment regarding my pic. 

I hope you are all well smiley


#10

Vivian, such a sweet message. XX


#11

Hello Nostromo,

 

Lovely to hear from you, I so glad you have your Mum and I hope she is not in too much pain, I have been disabled since my late twenties and use a wheelchair because of chronic back problems but I am able to drive and automatic car and have a hoist to get my wheelchair into the car so I am very lucky that I can get around and visit my husband and be fairly independant. Life is tough isn't it our son has a health problem although he is fine at the moment, but I do worry about him as he is single, we mum's never stop being mum's do we, thank goodness I say. You do find out who your real friends are as well as family but take it from an oldie who since my mum died is estranged from one of my brother's and sisters through their dreadful behaviour,  make a new life for yourself join a club or group, I don't know if you have a young PWP group in your area but if you do they would be good for you to join or if there isn't one do what we did put an article in the local paper and see if anyone else is interested in meeting up over a coffee or drink, we have made lifetime friends from just that one article and went on to start a branch which is now very successful with 180 members.

I wish you all the very best in whatever you do, you lovely young man

vivian

 


#12

Hi Vivian

I think the idea of going to a group is a good one. I have met a few people with PD but never in a group, only one to one. I'm not great with groups, even as a kid I was usually the odd child sat on his own in his own world, but maybe one of the good things that can come out of the diagnosis is that I'll learn how to join in and not be frightened of groups!

My Mum is ok at the moment. She's really pragmatic, I think this partly comes from her working as a nurse all her life. I wish she would talk more about how she feels about having cancer, but I have to respect that she doesn't want to dwell on it. 

I hope your son's health continues to be ok. I do hope it is not too serious. You are right when you say that mum's never stop being mum's. I've not been the best son over the years, but the last few years my mum and I have become much closer.

I'm glad to hear that you remain independant and are able to see your husband. I'm very encouraged to read your messages which bring a smile to my face when i read them.

Thanks again Vivian for taking the time to write such a thoughtful message.

Hope you are having a good week

Scott X


#13

 

Good Morning Scott,

 

When I say group's it doesn't have to be a big group, we started with just six of us and we used to go for pub lunches or meet in our homes, we always had a really good laugh so much so the neighbours wondered what was going on. My husband was in his thirties when had started with PD and we are now 71yrs and 69 with a very  old fashioned attitude which is, excuse the swearing "don't let the bugger's get you down" I don't know if that is allowed these days.

Don't get me wrong we have had lots of heartbreak but you pick yourself up and go on.

I am glad your mum is of that frame of mind it must help you both, and most of us can think we could have been  better to those we love but that is the nature of life none of us are perfect and the people who think they are haven't stepped out of the box.

Our son is quiet until you get to know him and quite reserved although he has a very good job and is in charge of people very successfully but in his personal life too quiet.

He was told he had cancer and a year or so to live but this wasn't the case eventually but he is left with this long term condition which can be very nasty over the years I just hope he may be one of the lucky one who doens't suffer too much later on. Its always at the back of my mind but we don't talk about it now as it would not help. He is going to be moving about an hour away from me and my husband is an hour in the other direction so I must keep driving and keep up with things driving on motorways you really have to be on top form.I am off in a minute to see my husband with my two dogs one of which is an assistance dog they are both labs and really great, the people in the home like to see them too!.

I hope you have a good day and your Mum.

vivian X

 

 


#14

Hi, it's the unexplained symptoms in the run up to diagnosis that can damage relationships.  These can start up to 10 or more years before the condition breaks cover.  In my case I can look back and recall periods of extreme fatigue and a quiet voice were impacting on how I led my life.  Most people don't realise you haven't 'been yourself' in that time so don't see the diagnosis as being any reason to view you differently.

Diagnosis means you can at last get the right drugs to help your brain/body get sufficient dopamine for 'normal' activities to recover for a while.  Energy and mood are usually the first to improve once your brain is properly 'doped up' once more.  Have a read on what dopamine is used for in the brain and you'll begin to see the effect of having lost approx 70% of the dopamine producing cells by the time of diagnosis, has probably had on your day to day life.

The key is that PD's detailed impact and progression is different for everyone.  Be wary of just being given drugs without trying to understand what they do. 

I've had PD diagnosed for 10 years soon and will be 54 next year.  I have my cr*p days but still drag my butt round the golf course with a decent enough handicap as it's great exercise for PD while you're able as it helps with coordination and stability.  All my mates at the club (made since diagnosis) know of my condition and every one of them will make me putt out the short putts, but I wouldn't have it any other way.

Make the most of every day that you feel OK and get through that bucket list so you have to make many more.  Family and friends are important, so once your drugs balance is right, you'll be ready and able to recognise which people you want in your life and have the ability to keep them there.

You'll probably notice by the time of this post I'm an open insomniac as there is a price for getting the drugs to work during 'waking' hours; they wreak havoc with sleep patterns.

Take care and keep active.


#15

Interesting what you have said Kendo.

I was dx in April this year and Neurologist told me I would have had PD for several years.

I seems to have explained a lot about my depression and emotional state since about 2007....I was feeling lost back then but didnt know why, my marriage became first big hurdle and I divorced my then husband after 30 years and wrapped it all up in a few months.  I had counselling and many trips to see the doctor, on and off anti-depressants and that all continued until the present day!  I was always a very careful girl  and although did wear heart on my sleeve, certainly didnt make irrational mistakes.  Then there were so many events which in PD terms were like waving a red flag to a bull (the PD bull), and so my father passed on in 2008, my divorce, breaking down at work and being sent home for 2 months....staying with my aunt at that time and she saying she wasnt surprised at me coming home in such a state!  I had been trying to work as a legal secretary in London, having worked there for 9 years and started making mistakes and my private emotional mess of a life was spilling over at work, emails coming at me from my then husband (who was in a mess himself trying to deal with me leaving) and not really wanting to work with me over financial affairs!  Emails from Spain regarding property matters and the pressure was building....I believed that I was trying to take control of my life and do things in the right way, but on receiving end of so much relationship fall-out.  2009 saw me being forced to leave my job, if I stayed I had to have a meeting over my errors at work and the mere thought of that enough I knew I couldnt cope, I took the redundancy money, but lost it all to solicitors fees for trying to get the financials right for my divorce.  I had begun a new relationship and that had lifted my spirits, but it seems PD was right behind me, I remember having moments where I just scratched my face out of such desperate feelings, I was in turmoil, torturing myself, blaming myself for hurting my family and taking it all on board.  More anti-d's, marrying again in 2010, new adjustments to handle, but again there was something not right about me, I kept feeling lost and was not at peace in myself.  Shingles arrived and then early 2011 under active thyroid was dx.  For a while I blamed all my depression and instability on that...more pills, managed to get a job for 4 months, and had meltdowns there and felt I couldnt handle any situations at work.  My Mum became poorly and within weeks i had lost her aged nearly 90!  More trauma and more drugs to try and give me sanity again and peace.  My new husband and I adapting to being married again (after both having had long marriages previously), I had moved away from friends/family, so thought depression was due to those events as well, missing my 5 grown children and I remained a victim and blaming myself for everything.  I grieved for my Mum, missed her so much, and tried to get on with life.  My profile lists it all and I didnt intend to write so much here again, but the Neuro said that all of these events would affect someone legitimately in their own way but having PD would not have helped me at all.  2012-2014 ....more events of trauma with adjusting in my new marriage and at times just taking off alone ...walking streets, and crying on park benches, staying in a hostel one night, walking several miles and then ringing friends in the West country who booked me a seat there and then on a coach to travel several hours to Taunton, I had no suitcase, just arrived in the clothes I was wearing!  Then in summer 2013, I realise my left leg is not right and restless leg dx, my left hand tremor introduces itself to me early this year and after many visits to the GP's at my surgery, the referral to Neuro came and after paying the fee because I really felt I couldnt wait for several months on a waiting list...23 April 2014 after many months of swotting up on PD symptoms was relieved (briefly) to know what the heck was happening to me.  I am working through it all but as I said to my husband laswt night, am still feeling lost and sometimes think that PD robs you of having peace of mind emotionally, because it feeds on any anxiety you may have and makes it 10 times worse.  I would say that my family and friends have all been on the receiving end of my 7 years of instability probably wondering what the heck happened to their wife/mother/daughter/friend....and I am still wondering .......(sorry for the essay - maybe someone else will understand)....thank you all for sharing your own personal experiences, they really do help me.  Your friend on the forum, Beverley  HUGS


#16

Hi Kendo

Your message made a lot of sense. The 3 or so years prior to my diagnosis were really tough and at the time I had no idea why. I had no idea why I was so anxious, fearful and indecisive, All quite out of character for me. I do wonder now how the disease has affected me apart from the slightly more obvious problems- my gait, stiffness, tremor...

I had no idea that my diagnosis would highlight so many other areas of my life. It takes a bit of coming to terms with to be honest.

I'm still getting used to the medications...I can't really rely on them as they seem to work some days and not work on other days.

Cheers for your message smiley


#17

Hi Beverley,

I'm so sorry to read how difficult life has been these past few years.  I did want to acknowledge and say that you are in my thoughts and I am sending you a big hug. I might not be able to make things better but I can empathise with how you feel, and you are not alone Beverley.

Scott X


#18

Hello Nostromo

Thank you for your kind reply to my essay!

I cant remember how to post a new message/topic...but I have just spent Friday eve, all day Saturday and the morning today lying in bed mostly feeling so lost and despairing....

More emotional chaos really, but just when I thinj I am getting used to my dx since April, I went downhill and experienced apathy and a feeling of giving up.  Not that I really want to hurt myself but being in pain emotionally and mentally, I got anxious travelling in a car as passenger Friday pm and that seemed to cause me to feel really unwell, I hadnt eaten all day, so that didnt help, was prob dehydrated etc. I have two lodgers here and so didnt want to have to talk to anyone, locked myself away in bedroom.  Does anyone understand?  I felt I needed comfort from my grown children etc. because I was feeling sorry for myself.  I am supposed to be exercising each day my Physio has given me my work, but neck has been playing up, and my hip.  Had hip scanned last week as GP wanted to see what was going on.  Interestingly he said that my neck and hip probs were not related to PD.  I feel like postponing physio check Friday because I cant be bothered to do any work. I feel like I am not making much progress emotionally because of setback, or maybe my expectations are unrealistic.  The psychological stuff is far more disturbing than the physical right now.  You all seem a lot braver than me!  I used to be very social etc. but I grieve for my old self...my OH grown daughterd are visiting today but I will be hiding away.  I feel PD has robbed me of my life and has been eating away at me since 2007 when I first became aware that emotionally there was something not right in my psyche.  I now wonder if my divorce came about because of PD, I will never know but when I get down, I feel such torment.


#19

MY PC laptop has slowed down so much too and its very frustrating...what do I do?


#20

dearHet,

Please, please try to speak to a PD specialist nurse on the phone or phone Puk help line.

You have been so brave for so long and I feel you urgently need some more counselling help.

Try to see the Physio this week too.  You need as much contact with these people who understand.

You are in my thoughts and I so wish I could do more than just type a few words.

Hug from AberW