Hello and SOS


#1

Hi everyone,

I've just joined the community in a vague hope that being on here and talking to others might save what little sanity I have left...

My partner developed a tremor in his right arm in July 2014. It took me until the December to realise what was wrong and it wasn't until April 2014 that I actually got him to go to the Doctor. He was referred to a Neurologist and diagnosed with Parkinson's.

Ever since then things have gone down rapidly. We aren't allowed to tell friends or family what he has, if we see the specialist or Dr we can't tell them the full story of his problems. To make matters worse his short term memory is now very bad and he is becoming verbally aggressive. 

Does this sound vaguely familiar to anyone out there?

In hope.


#2

Hi there. Sounds very familiar​. Like you I'm the partner, actually met my other half after his diagnosis​. Significant changes recently, evasive, devious and lying, plus denial​ of problems. I've had to contact his family for help, thank god for them, between us we have forced him to accept something​is very wrong. Emergency appointment on Friday.

You need help. Speak to one of the PD nurses without him and let them help to manage him, you do not have to obey these unreasonable​ conditions but it will be hard to do it alone. The condition​ is hard enough​ to​ cope with when eveyone is working together, no one can manage it on own. 

Take care of yourself, if you don't look after you, you can't look after him

X


#3
MSL..hello to you.. I am the wife of a PD person. My husband was diagnoised last August and he will not tell anyone..as far as hes concerned PD is no ones business only his....and mine but thats only sometimes. He saw the neurologist 2 weeks ago we were only in there 10mins. I think the neurologist wondered why we were there? My husband implied he had no problems and was 100%fit,said he felt better than he had done for years!!! He seems to forget the side of him I see daily. Hes still working,but none of his colleagues know. HR know but only because hes a driver. He was made to tell them,by me,because of insurance and change of his license to a 3 year one. I threatened to see his work myself if he didn't tell them himself. Hes asleep by 6pm every night in the chair because he wont ask for help at work. His personality has changed but he wont admit it. He shakes so much on his right side but hides it by putting his hand in his pocket. ....the list is endless... We have 3 Sons who he wont mention anything too...hence its the elephant in the room !! He is driving me to despair with it all. He forgets that I work too and look after our Grandson. I am starting to feel like his Mum...not his wife...I tell him this but he doesnt listen...he thinks about himself 1st and no one else lately.....when I try to talk about PD he replies "well I wont be here when I need a carer I will end it"".....thats not really a responsible answer to it all in my opinion? We have no PD nurse here at the moment. So cant get them involved....being a "carer" is so frustrating! You are not alone MSM...I am sure there are lots of carers who feel helpless about their situation..... Keep your chin up. Sending you my thoughts and best wishes..xx

#4

Hi all.

              just read your posts with interest. I were diagnosed in april 2016 but had symptoms long time before. Yes i can relate to your situations, firstly us males are stubborn people and once we are the man of the house we want to stay that way, and sometimes shunning help is a way of us believing that we are still able and in charge. I can understand your husband not wanting to tell his family as they no doubt will react in different ways, the best you could do is  tell them and they are aware and will also support you.


The main thing to remember is you as a carer can take time out  as a sufferer he takes it with him all the time. You need patience and although he may be different in his attitude he will still think the same old way inside.


Good luck


#5

Thank you all so much for taking the time to reply with your experiences. It has helped to know there are others who understand.

 


#6

Fingers crossed for you on Friday x


#7

babesbrown this sounds so, so familiar. He is totally unaware of just how much he has changed and also neglects to tell the full story when seeing the neurologist. You are so right, we see them daily and notice the changes. Reading your post is virtually identical to my situation, right down to the hand in the pocket. And no, that isn't a responsible answer but one that I get as well.

Keep your chin up too and hopefully we can all help each other to limp along one day at a time xx

 


#8

I have only just joined this forum as my husband (age 80) was only diagnosed 6 weeks ago.  My daughter and myself suspected a long time ago that he was suffering from something but were not sure what it was. After repeated requests to go to the doctors he finally agreed, the doc swiftly referred him on to a neurologist. A brain scan then ensued and we are awaiting a follow up appointment to find out the results. He is not on medication yet but he is hopeful that once he is on it he will be back to normal, I however, am not so sure. He has really struggled with the diagnosis and did not want his family to know about it either, I however decided that they  needed to know as they live away from us and I didn't want them to turn up and find out how far down hill he had gone since the last time they saw him. The problem I have is that the doctor said it is a slow developing disease but I have seen a rapid decline in him in the past 3 months, he has also recognised that he struggles more now than he did previously. Will the fact he has been diagnosed so late mean that the disease will have a rapid progression? He is already virtually housebound as he refuses to go out.


#9

Hello Diane,

Looking back there were signs that the Parkinsons was developing long before we realised. I can only say that we always seem to be playing catch up with medication levels and like you I have seen a rapid decline in recent months. There doesn't seem to be any set time scales to the progression, it varies so much with each person. Hopefully you won't be waiting too much longer for your husband's results and that medication can be sorted.

Look after yourself. 


#10

Hi MSL,

I was diagnosed on a similar timeframe, and didn't let on for some time. My executive cognitive function is impaired but no aggressive behaviour.

We told our sons when the tremor became too much to hide but I continued to hide it from my parents, friends and family for nearly two years. Sitting on my hand and doing all sorts of things to disguise the tremor was not a lot of fun. I found it difficult to tell my parents (in their mid 80s) as each time I was about to, they told me about an elderly neighbour or a relative who had been diagnosed with PD, and said how distressed they were about it.

I told them after about two years, and I'm glad. My father reacted in a very quiet way, and started making pots of soup and bringing them to me every week. They just accept it now and things are much easier. You can't hide it forever, the symptoms won't allow that long term. Better to bite the bullet and get on with things.

As someone else suggested, if your husband doesn't want to talk to the neurologist (and lets face it, some of them seem to lack empathy if you ask me), then talk to the Nurses. If you can't tell the full story your husband may not be getting the correct treatment.


#11

Hi Westy,

That is the point I keep trying to make to him, it is for everyone's benefit if he would just be honest with the medical team. Appointment with his PD nurse next month, a year round instead of the promised 6 months, so will have to wait and see what happens.

Homemade soup sounds wonderful, what a lovely thought.


#12

Hello, I've just joined the forum so this is my first post! My husband was diagnosed with PD 11 years ago when we were in our 50s. Thankfully he was willing to be open about it and got a lot of support at work. He only had to give up two years ago when his falling became too much of a problem. He was also willing to tell his family, and and my family. Both are supportive but neither live nearby so keep in touch with him by phone as he's not tech savvie. I have added support from email and facebook. I'm also still able to work 4 days a week and get a lot of support there. Having said that, since stopping work he is becoming more withdrawn and unwilling to go out. He also tries to gloss over symptoms when he sees his consultant and/or PD nurse, so I tend to get disapproving looks from him when I mention things I've seen. It does sometimes feel like living with a stubborn child who just withdraws into silence if anything PD related is mentioned. However, it sounds like things are a whole lot worse for you if he's refusing to acknowledge the problem. It's putting the whole burden of his PD on to you, and stopping you from getting the help and support you need to cope emotionally and practically as the illness progresses. I do hope the appointment with the PD nurse goes well. I think you will need to go armed with a list of things you need to talk about in terms of symptoms, treatments and practical and financial support that might be available. He probably won't thank you for it but you need to know for your own peace of mind and he needs to know in order to come to terms with the condition rather than pretending it doesn't exist. Having all the facts can make things a bit easier because it's the uncertainty that is so scary. 


#13

I think a list is a very good suggestion. Certainly seems to be a male thing with keeping silent though.

 

What beautiful fur babies. Love the names, they put me straight in mind of Harry Potter with Fred and George Weasley!


#14

We inherited the names when we adopted the kitties from the Celia Hammond Trust. They were taken in as kittens and then adopted by a lovely young couple who christened them Fred and George. After having them for two years they emigrated to Australia so the kitties came to live with us. Fred is the black one and he lost his tail as a kitten but it doesn't seem to bother him. He's a 'love me' cat, always wanting attention, cuddles and, of course, food. We decided to change George the tabby to Georgie as she's actually his sister. She's shy, nervous, and also the killer - we get 'presents' of mice, birds, and once a gigantic rat that was as big as she is. She makes us laugh because when she does bring us a present she will mieow loudly until we make a fuss and tell her what a clever cat she is. Fred has a habit of coming to 'help' me when I'm on my laptop. He will stroll across the keyboard to get attention and, if that fails, flop down on it and refuse to move until he gets cuddles. We've had them for 7 years and they are great source of entertainment and a positive distraction if the PD becomes too prominent in our lives. It's good to have other things to care about besides ourselves.


Keeping things to himself is definitely a male thing. I hope you have people around you that you can open up to and share the worries and frustrations. It's so important to feel supported. It's also important to be with people who let you be yourself, not just 'the carer'. It can get a bit galling when everyone you meet immediately asks 'how's your husband?' rather than 'how are you?' Being kind to yourself and making time for yourself is a must.


#15

cool

  Hello Fred and Georges Mum, MSL , WESTY, Babestown  Smoggs, Hello and SOS clb18,  Dianef80 and  last  but  by  no  means  last our Aussie Bro  Kev, THE WIZARD and hoped  for  Australiander far  away  buddy

             Once again a  common thread runs through  all  the postsI have  read here, and  that  thread is  born with   PD  its called  selfishness one  of  the  easiest way  to spot  someone with this evil  disease,they  become  withdraws  avoid  social gatherings   wont  talk  about  the  problem on  pain  of  death and develop OCB   this  is  a  very dangerous time and  must  be   handled carefully if  black  depression  is allowed to dominate then  you could lose everything and I mean everything,  a  great happy  go  lucky buddy was  ddiagnosed with BLACKHEART IN 2012 he  was a pilot working  for  a  local company and had  no   symptoms, now commercial pilots have  a  mandatory  medical every  6months  and  my  mate  said he  was  sailing  through his  med chatting  to  the doc when he  (the doc )  noticed  the little  finger on  his  left hand vibrating" ,  how  long have  you   had   that problem with  your  finger," said Mad Mick,,  Iknow  I know  I dont know  how  either  ,  oh  about  a  year said  my  pal,  Right  get  dresssed and  go  to  the  Neuro at the  RVI    newcatle I will ring  and  tell  them  you  are  coming  so of he went happiest guy  I  have had  the pleasure of  calling my  friend he  went and  came  back with  PD almostt  %100 sure a MRI THE  following day  confirmed  it  so   his  24yr  flying career went down  the  pan, 7 of  those  yrs  in  the RAF   ,  well if  you know your husbands  or  wives show  a  marked  change  in  personality my  buddy    ( J )  we  shall  calll  him,was a totally different bloke ,j  lived  to  fly if   he  was  not among  the  clouds  at   least 2  times  a  day  he  had  withdrawal  symptoms, and  the  downward  spiral  OR  IM  IN  A  FLAT  SPIN FED  help  me  mate  he  would  say,  I asked  him  one  day  what  I could  do to  help  ,  he  replied take me to Switzerland   to  the  knackers  yard  well I refused of  course  pointing out  how  Duodapa  had  helped   me,  but  he   was  inconsolable and as  his  symptoms  grew  worse,   he  simply  took  his shotgun and  well  took   his  own  life,  he left a pregnant  girlfriend and  a  3yr  old boy,  now  you  see  how  the  selfishness  BLACKHEART  creates  is  dangerous it  happened  to  me but  I realised my  predicament  soon  saw at  least 4  speciaists  who  put  me  on the  right  meds  and  the  right  course,  one  chap  a  Psychologist   taught  me  CBT  or  cognitive  behaviour  therapy  and  my  did  it  help  and  still  does,  strangely  I use it  more  when  encountering  night  terrors, so  get  help  guys  before  its  too  late,  I did  and  Im stable  now,  so  push  push  push  both  your  partner  and  your  GP  OR  HOSPITAL

                                                                                                                             FOR  THE  TIMES  THEY  ARE  A  CHANGING,   OR  NEED  CHANGING,, DONT  BE  PUT  OFF  THE  ALTERNATIVE  IS  NOT  NICE

                                                                                                                                                                             FED

 


#16

The more I read, research and talk to you all on here, the more I realise what a horrendous condition this is. And because it produces such a wide range of symptoms in people it does literally seem to be a case of trial and error in finding the correct treatment.Thankfully you sound to have found the right balance but devastating to hear about your friend.


#17

They sound to be real characters! The most my cat will bring me as a present is a dead spider but you still have to say thank you. We have just taken on a puppy as well, 3 months old this week, who is certainly providing a rather chaotic distraction! Might be easier if hubby could remember pup's name and the commands I am trying to teach him but we are getting there, all be it very slowly.


#18

Having people and pets around is so important. But, as Fedex so movingly told us, the one thing the sufferer wants to do is withdraw into their own world where they can avoid the topic, where no one can see them as vulnerable and no longer the independent person they were. Unfortunately if they do withdraw, apathy and depression become their only friends. It's a really awful 'catch 22' situation, with you on the outside trying to keep in contact, often with little appreciation. I hope the appointment with the consultant went well and you were able to put across your husband's actual state rather than his interpretation, and that you were able to get some straight answers on the way forward. I have to say our PD consultant and nurse are very good, no nonsense people who cut through my husband's verbal avoidance tactics to get to the nub of things. Plus they always check how I'm doing as well.

It's nice to know that everyone on this forum understands the problems we all face and can offer useful insights from both the sufferer's and the carer's point of view.


#19

cool

 

  Hello  yes I would  love  a  K9 but  my  wife will not  allow it she is prone to asthma and dogs set it off  bur  not  all  dogs my daughter  has a Jackapoodle and  this   lovely little  dog  and the Yorkie she also  owns  dont  seem  to  affect  her ,dogs with  pooodly  hair  seem  ok  but  she  still wont  let  me  have  one  its  so  relaxing  when I  visit  my  youngest  chid and  BETTY  and  TEDDY  first  they  go  bonkers its   astonishing  how  they  defy  gravity  travellling  at  High  velocity   ROUND  THE  WALLS ,  LIKE  THE  WALL  OF  DEATH  GUYS,only  they  are  on  motorbikes then when  they have  used up  3yrs  worth  of  energy  they  flop down  Kna????d  on  my  knee,  oh  what    joy

                                         But  not  for  me, I admit the  can  be  a heavy  work load but  we  could  adopt  a  ready  house  trained dog,  but   no  and she gets  very wound  up  so  I will  just leave  it

                                    Best wishes   FED


#20

Yep, Fred and Georgie also go through a mad half hour morning and evening, and then sleep for the rest of the time. Georgie proudly brought me a little bird this morning so I had to 'congratulate her', while at the same time retrieving the poor thing and putting it outside. It was still breathing so hopefully it will survive.

Sorry you can't have a little doggie as they are such wonderful listeners and 'understand' without doing anything but look at you with adoring eyes. Cats, of course, demand that you look at THEM with adoring eyes! Any friends or neighbours close by who would let you visit for coffee and a pet stroking session? Would your wife be OK with a budgie or canary? You could have some good conversations with them!