Dad newly diagnosed


#1

Hiya

hopefully this is in the right place. Just been told by my mum that dad has Parkinson's, he's yet to have it confirmed officially, but he's been falling over a lot, depressed and just giving up on stuff.

I'm in bits, I have no idea what to do. I've watched them struggle the last few months, not knowing what caused his slow walking or falling over, 

hes 78 and had. Stroke 14 years ago, so we were expecting something, but it all just seems so sudden. I just don't know what to say or do. 

I'm the baby of the family and I was always expecting my sisters to cope with it. But ones doesn't keep in touch and the other, the one I thought was a rock, is suffering from stress and anxiety herself, so I can't tell her. I feel so alone, I need to be here for my mum and I will be, but at the same time I feel so selfish, I just wanna run away and hide. 

I came on this website looking for answers, but I've just managed to scare myself. Help!


#2

Hello lovely, I'm sorry for your distress, for your father and family. Deep breaths!

My father has been diagnosed for about 8 years. You have made the first step brilliantly, clever you to research the one place which will help you understand and give you some knowledge. I assumed, like the majority of the population I am sure, that Parkinsons meant a tremor and a bit of stumbling. It has lots of other symptoms, but is not generic, it affects people in very different ways, so understand there is no 'norm'.

I believe you will obtain answers and help from many people who are probably more qualified than I am. I too have siblings who cannot help for one reason or another. read as much information as you can and seek a Parkinsons nurse to help you - they are a godsend. Please shout if I can help with anything. You're doing great already xx

 


#3

Thanks Hun. I went through cancer with my mum a few years ago (she's beating it), and found their online community very helpful, so I felt the need to find the equivalent for Parkinson's. I want some where where people,understand what,we're going through and don't befuddle me with jargon. 

Dads had problems with his legs since Xmas and has since had falls and depression. It was only today that the doctor mentioned it, after seeing how he struggled to walk.

hopefully over the next few weeks we can get stuff sorted. It's just this limbo period. It's like bein at the top of the roller coaster,,just about to fall down the other side, I know it's gonna happen, I can see it happening I just need to get to the bottom.

 


#4

I know what you mean. Hang in there. Will check in tomorrow and say hi. I may be able to give you the benefit of my sad advice! x

 


#5

Thanks. Any advice is good!


#6

Hi again,

Apologies, I messaged earlier but seemed to somehow delete what I was writing - must be limited words allowed! Hope your day has been ok and your dad (and mum) is ok too.

Well known side effects of Parkinsons is depression. The lack of dopamine, which controls part of the brain's reward and pleasure centres, can also cause addiction (such as gambling).

One of the drugs used to increase (or trick the brain into thinking it has greater levels of) dopamine is Madopar - just google any of these and you'll read all you need to know...

My dad suffers with his legs, but we have just discovered that the main reason for this is that he has been sitting for too long (he can't manage to stay in a bed any longer), therefore his muscles have retracted - so every time he tries to lay down, he is in agony as he is stretching them again (!) Exercise is really important. If your dad is at the early stages then Tai chi is recommended (as other things which you'll find on here). Diet is also really important and PLENTY of fluid (which aids the drugs working and constipation).

There is so much to learn - and each stage brings with it new challenges. It wouldn't be fair of me to assume that your father would have the same symptoms as mine - that's the incredible thing - it's different in every sufferer!

Get yourself in contact with a Parkinson Nurse - and make sure that they correspond directly with the consultant attributed to your dad. For 6 years we were under a consultant and Parkinsons nurse, not realising that our brilliant nurse, worked with a different (more specialist) consultant! They had weekly meetings - you see the consultant maybe twice a year, if you are lucky!

Shout if I can help. Take care xx

 


#7

Hi there, 

my mum has been recently diagnosed with PD (I'm learning all these abbreviations from here!) days before her 70th. We too are very over whelmed but what I have found really helpful is too look up,the bits I just need at that time. I've started a book with any infor that I find that I want to pass on. Right now the issue that me and my sister are focusing on is eating well and the exercise part - so that my little project for the moment. I too, like you, get scared when I read too much. This forum will tell you that it is ok to be scared but there is help out there. Take your time. I got freaked out by how my mum could end up instead of focusing on the now - so I do a day at the time, same motto that my mum has, plan family activities and try and be positive. It's not always easy and if you'd seen me last week, I was constantly in tears!!! One day at a time!!!

Celine x


#8

Hi Celine,

For most people it is a slow progression so  you usually have  have time to deal with any problems as they arise.  . If you have not joined PD UK yet, I should do so and they will send you a bumper bundle of advice and information at a very small cost. I am 74 and diagnosed five years ago and most people would not know I have PD unless I mention it..   The NICE (National Institute for clinical Excellence) guidelines  say that newly diagnosed PWP's should be assessed for physio  shutting the door after the horse has bolted.  Exercise is essential to counteract  the effect of the disease physically and is good for your mental wellbeing    In  some quarters they even think it might actually  hold back the disease process..    Yoga stretches the muscles and helps balance and  Tai ,Chi. which  I    have seen  elderly people doing in the park  in the early morning in Hongkong  ,is  particularly good for balance and coordination..  Nordic walking (the one with two poles)   ticks a lot of boxes if you can find a class that does not thunder along..  Age UK run courses in my area and presumably elsewhere..   However, any walking is good.  Use it or lose it applies especially to PD. 

You sound as if you are already on the road to a positive approach to this.  It is a dreadful shock to almost everyone unless they have gone years without a diagnosis when it can come as a relief.. I went by myself to the neuro.as my doctor didn't think it was PD and I came home and shrieked and hollered for two or three hours or more. I Iive alone and I was terrified.   Also it  is a sort of bereavement for the future you assumed you would have  - m,y mother was just short of a 100 when she died taking absolutely no pills..  But the fact is it focussed my mind and I got on with going to the places I wanted to go.  Life can be just as good only different, or in my case not different at all in any  way that matters.  I could go on and on...... in fact I just did!! 

Best wishes

 


#9

Hello from Canada Celine.  I am 68 and was diagnosed 4 years ago and like Eileen nobody would know if I didn't tell them (I tell the world in my blog www.wpgchap.blogspot.ca).  I keep the blog fairly active because I don't think people know enough about the problems PWP face every day.  It has been called a designer disease because it is unique to the individual.  In some ways, it is fascinating.  I think it keeps trying to find my weakness as I have had many of the symptoms you read about visit me for a few weeks and then suddenly disappear.  Of course some take hold and set up camp.  I am affected, so far, in my right side.  I am tremor dominant, so my right had and arm have been known to jump around a bit.  That is until I was put on mirapex and amantadine which successfully suppress the tremor and make me appear normal. 

One other seemingly permanent problem is if I open my mouth and talk, my voice is very soft and difficult to hear  so I get alot of "Whasthat? Pardon? and Sayagain?"  I really wish I had taken voice therapy more seriously.

Also like Eileen, I believe exercise has a positive effect on PD.  I use a bosu ball for balance exercises and do a great deal of walking in the early morning.  I also stretch every day. 

One last thing, tell your mom to remain positive.  I define optimism as the belief there will be a cure in the near future while Pessimissm I define as the belief that the definition of optimism is true.  I am by nature an optimist and I think that keeps my PD at bay, slowing its progress and allowing me to live a relatively normal life. 


#10

Also, hello from the U.S., Celine and Karen --

I can echo what wpgchap said.  Exercise is the most important contribution we can make to our own welfare, I think.  For years I thought I was too busy with my career to keep up with a true exercise program.  At retirement I began to exercise; then PD struck and I have increased my exercise greatly!  A second aid is optimism.  Like wpgchap, I tend to be optimistic by nature, and I have never experienced the depression or continued anxiety so many pwp have to deal with.  Remember that for most of us, this is a slow disease, taking many years to have a really life-changing impact.  And medications are getting more effective, too.

One other thing:  When I was first diagnosed, I was shocked and distressed, but I really think it was worse for my mother and sister.  They had trouble fighting tears every time they saw me for a time.  So you may be feeling so much empathy for the pwp that you suffer more!  Fortunately, my husband managed to be supportive without anxiety, and his strength helped me not to worry about the future.

Best wishes to both of you and your families,

J


#11

I too am waiting for a diagnosis . My gp is sure it's pd but urgent  referral 2 weeks ago ... I still haven't heard anything . My problems are L arm tremor with difficulty walking . 

Once people have started treatment did they find these symptoms went ? I need to get back to work and at mo not fit. V worried 


#12

Hi, Kittens3 --

I can't speak for everyone, of course, but in my case early treatment completely eliminated the symptoms I'd been having.  I went on quite a while before the symptoms emerged again and I had to increase my medication.  For years no one ever guessed that I had PD; today, after 17 years, the only people who guess are those with spouses or others close to them who also have the disease.  My symptoms are still so subtle that hardly anyone notices them!  I've even surprised a few doctors and nurses when I told them!

If you're as fortunate as I was and have no significant side effects, you may get back to work very soon.  My first drug was Mirapex (Pramipexole), and it only took two weeks to eliminate the symptoms.

Good luck!     J


#13

Thank you for that info. I hope it does same for me . The wait to hear appt date to get things moving is unbearable at mo . I'm abit of a control freak and v much out of control.

x


#14

Yes, waiting and not knowing positively what your diagnosis will be is the worst time of all.  We've all been there and understand what you're feeling.  I can only hope the time passes quickly for you!  Sometimes it's a relief just to get the diagnosis, because then you can move on to the stage of fighting whatever illness you have.

Best wishes,

J


#15

Just heard appt not till 17 sept . Seems a long time for urgent appt . Gp trying to bring it forward but not hopeful 

staying in limbo land  . Not fit for work and can't move forward

 


#16

Me too.  Like J of G, my symptoms vanished after a couple of days on max dose of amantadine and a near max dose of mirapex.

 

 


#17

I hope things are getting better for you pal. Mum was diagnosed with PD in June. She was diagnosed with COPD 2 weeks later on 25th July.

Dad who was looking after her died 3 days later on 26th July. Dad died of COPD, but he had it for 30+ years.

Im just lost & know this is the wrong place to post this. HELP PLEASE!!! Dad was rushed in to hospital & died, then Mum was rushed in a day later & nearly died (copd). She cant get her head around my Dad dieing with her recent diagnoses of PD..... Im at a loss as is my poor wee Mam.  


#18

Shocker, welcome!  It doesn't matter if you post in the "wrong" thread here.  Someone always answers anyway.  I have found a lot of good advice and sympathetic support on this forum.

Your multiple burden must be extremely hard to bear -- the loss of your father plus your mother's double diagnosis!  I wish I could be of some true help, but all I have to offer is the tired old advice to take a day at a time and to try not to look far into the future.  With PD, this procedure truly helps, for it is a slow disease usually, and there is little use in worrying about symptoms that may not occur for years -- if ever.  I have no personal experience with copd but think it may be the condition that requires more immediate care.

You will receive other, more informative responses soon, I'm sure.  Just know that everyone here cares about what you and your mother are suffering.  Best wishes,

J


#19

Thanks lots & lots J.

My wee Ma is terrified to be alone at night. Terrified that she will have another 'Cant Breathe' & die in bed alone. We only got her home from hospital on Thursday (apart from a day out to go to Dads funeral & in a wheelchair) .

I'm staying tonight, I'm in the spare room bed next to her. Trouble is my Sister (who will be back at work soon) was here telling me how bad Im being staying over coz my Mum will have to get used to living at night herself. I get that I really do but her husband has just died ffs. My sister was with Dad as he passed in hospital. It was't nice............ It's the same sensation as drowning. Dad told me this often. 1st time it happened to Mum (couple o weeks ago) she was trying to shout, "Wullie, Wullie" (Dad's name) but she couldn't breath. Then Dad died & the following day Mum had her 2nd can't breath episode & was rushed into the hospital with her COPD. Her PD aint great either. Very Recently diagnosed, but she's had it for at least a year in my minds eye. Did't know what it was. They where/are both 72 yoa.

I don't know what to do pal. Me & my Mum have always been very close & I want to do what's best for her. Im the black sheep o the family & only get to hear snippets of info about my own Mother. I don't even know where Mum is on the Unified Parkinson's Disease Rating Scale (UPDRS) ? Im left in the dark & dunno what to do. Sister has been brilliant at dealing with all of Dads fiances, Banks, Lawyers, organising the carers who come in 3 times pd, to make sure Mum takes her proper medication. She's been fantastic at all that, brilliant in fact but she's very pragmatic & clearly thinks, has said, "You can't look after yourself never mind your Mum. Arghhhhhh. My Sisters pals & probally a couple of my Dads old drinking buddies know more than me & with all this Data Protection nonsensce I hav't spoke to 1 Dr about Mums PD. A general sorrta Dr told me about the COPD in the hospital, but only after Mum told the Dr, "this is my son tell him whatever he wants to know'. My Sister & rest of estranged family (& non family) have each other to talk to about Mums well being. We all want whats best for her & argueing can't help any1. I suppouse Im a bit hurt too coz my Sister thinks so little of me & doess't even know me. I only have this Orgs telephone No & know one to share/talk with. Im going to go to the gym to kill of my anger their I think.

Anyways, soz for rambling on there pal. I dunno what to do other than the obvious be there for her when & where she needs me. Any & all advice would be much welcome my friend.
Thanks for reading, Shaun.


#20

Hello, Shaun --

As long as your mum wants the comfort of having someone in the house with her, I think  you are doing the right thing in staying.  If you're already the black sheep in the family, what do you have to lose?  :)   The situation will probably change anyway as your mum gains confidence.  But a new widow in poor health really needs some support from loved ones!  I was widowed two years ago and remember well how terribly alone I felt  In my case, I had a sister who stayed in my home the first week.

If your mother was recently diagnosed and is already on medication, perhaps her PD will improve soon.  If the medication is for the copd only, her PD symptoms may be mild enough that her doctor is delaying medication.  It doesn't really matter that you cannot pinpoint the development of her PD on a scale; the essential thing is that when taking medications, she have no serious side effects and does show improvement.  Also, I'm sure you are correct about her having had PD for a while.  Most of us who have it are diagnosed three to five years after the actual onset -- or so we're told.  In retrospect, I realised that I had had it at least five years.  My first symptom was gastroparesis, abnormally slow functioning of the stomach.  Who would have associated that with PD?  Then later I showed more typical symptoms, such as an awkward gait and lack of arm movement when walking.  That's when I consulted my doctor.

I hope that as your sister observes your genuine concern for your mum, she will gain some respect for you.  In the meantime, let her know you are only doing what you can see is best for your mum.  And keep going to that gym!  Better to vent your anger there than in front of your sister.  :)

Sincere best wishes,        J