I just need to share my story and vent a little


#1

My dad was diagnosed in November 2014 but we knew he was ill from December 2012. He collapsed at work and thought he'd just knocked himself out whilst grovelling around under his work bench. The doctor said it was a concussion although he had no bump, bruising or evidence of a bang on the head. Shortly after he started to have trouble walking so the GP sent him for a scan of his legs. The GP recommended physio to help his walking but it did no good. Then they did an MRI of his neck to see if the problem was there. Again, we knew this wasn't the problem but the GP ignored our information as he seemed to have made his mind up that as dad was 65 he was just old and things like this happen when you get old. By this time dad was becoming more depressed and just sat in his armchair. For a very active man who made working scale model steam engines this was tragic to see. I could see my dad disappearing each time I saw him. Eventually dad went private and the consultant said it was pretty clear that dad was displaying all the symptoms of PD. At last, someone agreed with us!  After the diagnosis he was given medication which has helped enormously. He walks better but still needs the scooter I bought him to go further than the end of the street. He talks to us again and shows an interest in things instead of just staring at the TV. It's still a long haul but I wonder how he would be now if the GP had listened when we first went to him with our worries?  Mum is struggling to cope and is angry all the time because dad has changed so much and I just want to cry sometimes because I can't change anything. I wish she would get some help to understand everything but she gets angry when I suggest it. I love my mum and dad but, apart from being there when they need me, there's nothing else I can do. 

Sorry for for going on but I needed to tell my story to people who may understand what we've been going through. 


#2

Hi Gillyyg

So sorry to hear of your dads plight . I was dx with PD in June 2014 I'd been to gp with problems for 2 years prior to dx but told I was not young anymore and i was working to hard!

It wasn't until I collapsed  at work including a total cognitive melt down that I was seen by a nuro who dx PD after a 20 min examination saying I likely had it for 5 years prior to that.

Im a mechanic / engeneer and have had to give up my work due to PD  as trying to do fine detail work with shaking hands and a poor memory is not good,

Just being there for your mum n dad is the most important thing and finding out all you can about PD and the help they can get. You will find loads of info here and people who will always listen and advises where they can, and there's no better place to vent your frustrason as we all have same problems and needs.

So my best to you and your mum n dad 

Live well   Cc


#3

Hi Gillyn,

 

According to the NICE guidelines for what should be done asap diagnosis of Parkinsons, your dad should be referred for physio.  It is possible to regain function given the right exercises now that medication is in place.  The previous failure of physio is not surprising but the physio not recognising the PD is.. 65 is no age nowadays.   If you have the money, it might be worth going privately to a chartered physio who specialises in neurological conditions but they are rather expensive.   The brain is capable of re-learning the automatic movements which are affected by the lack of dopamine.

Your dad is lucky to have such perceptive offspring.  Keep trusting your own instincts

Best wishes

 

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#4

Thank you Cheshire Cat. My dad is an engineer and his boss retired him  because he was unsteady and couldn't concentrate (just like you). I think that was what started the depression. After working for 50 years he suddenly had no choice in his future. He also couldn't potter in his workshop like he used to because those technical drawings are blooming complicated things and he just couldn't work it out. Since the meds have started working he's pottering again and seems much happier

My real worry now is mum because she's really having a hard time of it. Everyone asks about dad but no-one asks how she's coping. She's not computer savvy or I'd send her on here to chat!  I'm going to try and persuade her to go to her local group as chatting with people in the same situation will probably help. 

I'm sorry to hear you had the same problems as my dad but at least we know his delay in treatment isn't unusual. 

Stay well and take care. x


#5

Thank you eileenpatricia. The GP was convinced it was arthritis and the physio actually wrote to him and said that she couldn't do anything more until the PD was addressed. The GP ignored her as well. I'm so very angry that one healthcare professional just brushed dad off as old and that things get more difficult as you age. It was clear to me, mum and my sister that this was not simply age related. We even met the practice manager to see if she could push anything through but couldn't make the GP deviate from his decision. Sorry, getting angry again!

Dad didn't want to go private but I'm very pleased he did because if we'd waited for the GP to diagnose we'd be no further forward. 

Thank you for listening, just talking to people outside my family and friends is a massive help. Everyone here will advise without bias where family/friends will say what they think you want to hear. 

Take care. x


#6

Thank you eileenpatricia. The GP was convinced it was arthritis and the physio actually wrote to him and said that she couldn't do anything more until the PD was addressed. The GP ignored her as well. I'm so very angry that one healthcare professional just brushed dad off as old and that things get more difficult as you age. It was clear to me, mum and my sister that this was not simply age related. We even met the practice manager to see if she could push anything through but couldn't make the GP deviate from his decision. Sorry, getting angry again!

Dad didn't want to go private but I'm very pleased he did because if we'd waited for the GP to diagnose we'd be no further forward. 

Thank you for listening, just talking to people outside my family and friends is a massive help. Everyone here will advise without bias where family/friends will say what they think you want to hear. 

Take care. x