Despair?


#1

My fiancé has just been told he has a 95% chance of having PD. We went to see the neurologist on Wednesday totally unaware of the potential diagnosis which was just tossed casually our way with no apologies or concern. R is just 45 and our lives have seemingly stopped. The future? Well it just isn't. Both of us are in very dark places right now. We have a two week holiday coming up which we should be looking forward to but instead we have to go carrying this dark passenger. How do we focus on the future when we cannot see one? I have read so many posts on here and everyone seems so accepting (and lovely) of their lot but I am assuming you too went through the emotional roller coaster? So many questions and sweet FA offered in the way of help and guidance from the neuro. R's main panic is driving and working. No driving means no job and we have no idea as to how quickly things will deteriorate.

Any help and advice would be greatly appreciated as we are just drowning xx


#2

Hi Tiny3003,

             I would just like to say a few things.Firstly,the bonus your fiance has of having a partner who comes on here for guidance during what must be an upsetting time for you both.Secondly,people cope in lots of different ways following a probable life changing diagnosis.Some better than others,but at the end of the day they do.Your fiance is exactly the same age as i was on my diagnosis in Nov 2009.I am still physically fit,exercise regularly,take the medication,and most people don't realise i have parkinsons unless i tell them.

             There is a coming to terms with things scenario to go through,of which there is also a general guidance step by step usual pattern available on research on this forum.However everyone is different.What i will say though is this.You say "we are just drowning".Well you have just found your life jackets.Jump aboard the pd uk boat.It may not be plain sailing,but there are many passengers and crew on here to help you through the stormiest of seas.

                        Take care

                            Titan


#3

hello i would go and enjoy your holiday first before researching pd, parkinsons can come in alot of different forms it could take years till your h gets bad.i was 34yr when dx all tho mine was very aggressive 8yrs on im still driving there are a lot of good meds out there aswell which will keep pd at bay.live life gus


#4

Hi tiny3003

I was diagnosed, age 47, 8 years ago. It was a shock, my husband put his head on my shoulder and cried for our lost future. 

After all this time I find my life still goes on. Yes I have to cope with the limitations Parkinsons has put on me but I still go out, go on holiday, enjoy time with my family and friends. I don't work anymore, I was a teacher, but I do look after my home and the 5 adults that live in it with little help. I don't drive anymore but that was my choice. I surrendered my licence when I notified the DVLA of my condition because I didn't feel safe behind the wheel but with the help of medication I'm sure I could take an assessment and get it back should I choose to

What I'm trying to say is that life goes on after diagnosis. Your partner should take advantage of the meds when they're offered, remember it may take a while to find out what suits him best. Stay as fit as he can and try to be positive.

Every Parkinsons sufferer has a different experience of this disease. There is no way of knowing how quickly it will progress for your partner, some people are still working over a decade after diagnosis.

Go on your holiday, have a brilliant time and don't let this stupid condition spoil it

Regards

mrtoad


#5

I too thought there was no future and was also told in a casual throw away remark; left with no support or help.  Thank god for this forum.   You will both take time to come to terms with the diagnosis, but what really has changed???.  Your fiancée was okay yesterday, and will be tomorrow and next week.  You never know what is in the future and this is the same with pd - I read somewhere that all a diagnosis of pd means that you can see a shadow of what the future might be, but nonetheless the future is still foggy, as it is for everyone - you WILL come to terms with it - it hasn't changed anything today or tomorrow or next week ..... Live for today - don't worry about tomorrow, let alone years ahead


#6

Thank you so much for your kind words. I knew I had come to the right place and you have proved me right.  I will show this to my other half and hopefully he will see a future (however foggy it may be moonandstars!) Your replies have made a difference and it looks like we will have to learn the backstroke together as we are NOT going to sink like a stone! Time to start fighting! Thanks again guys xxxx


#7

your welcome someone is always here !


#8

I know exactly how you both must be feeling, but take it from me it could be an awful lot worse, PD will never kill us and my advice to you is be positive about your future together, go on holiday and enjoy it to the full. Be positive and show the world there is life after diagnoses.

From a 45 year old farmer, mother of 2, dx over 10 years ago. Just going to check my in lamb ewes before bed.

 

 

 


#9

HI Tiny, i just joined this group today and find myself in exactly the same place as you... my husband was diagnosed a month ago with idiopathic parkinsons disease, and we too have a holiday coming up in may.  To my utter surprise my husband has taken the diagnosis very very well.... but he has no idea what the bigger picture contains, which is good news..... however.. its me thats fallen apart.... i have been with my husband 36 years and thought i knew him inside out.. that was until 3 years ago, when he totally changed.. was non empathic, very apathetic, was disrespectful and non grateful for all i was doing to help him.... yes it caused a major rift, he was unable to see things the way i did, and was unable to feel apologetic for his wrong doings..... i of course was devastated and so so upset...... it was like living with a total stranger, he became someone i didnt recognise.. and of course for me.... the hurt and upset continued as i watched him self destruct and take everything with him along the way.  I visited his doc ( who is my doc) and discussed these aspects with him, her agreed it came across as selfish and suggested counselling.. i got my husband to visit the doc and he suggested he take antidepressants, which my husband refused... since then life carried on.. i tried so hard to put up and shut up.. but the hurt and upset remained.... the hurt he never saw or acknowledged.... Then the head tremors began, the bradykinesia.... does anyone here know if apathy and this form of behaviour ( non motor) can be the initial symptoms of PD???  i can get no conclusive answers from the medics, and the not knowing is tearing me apart.

What will i do??? i will go and enjoy my holiday.... after my husbands diagnosis he went into town and treated me to a two week holiday to aruba...an island i always craved to visit, as a treat, he said it was his way of making amends for the way he had treated me, which was so so nice..... yet promises to change dont materialise and life continues.... i think i just have to accept that this is pd and not my husband, and maybe in time with support i can adapt and continue to take care of him..... can anyone shed any light on this??? i so feel for all sufferers i really do..... and now i also see the other flip of the coin.... noit only does pd affect the sufferer.... it affects everyone around them... wives included xx

 


#10

Hi Tiny,

There are neurologists in dire need of some sensitivity training, especially the ‘delivering bad news’ module! - I had a very similar experience with a neurologist whose specialisation I later found out was headaches (I assume that is treating rather than causing them!).

I see you’ve already received some good advice which more than covers what I would offer– however I would urge your fiancé to ditch your current neurologist and make an appointment with a neurologist who specialises in movement disorders – by definition this will include Parkinson’s.  Arrange to have an assessment which should provide a treatment plan, including suitable medication.  To find such a specialist ask your GP and Parkinson’s Nurse (if there is one in your area), but you may have to resort to some self help via the internet, which I had to do in my case, but was well worth the effort.

In many ways Parkinson’s is a strange condition about which so much and yet so little is really known.   Part of coming to terms with living with PD is realising that everyone’s experience is different, but having an early, thorough assessment from someone who specialises in the condition is a good place from where to start the journey.

Be careful out there.


#11

I ain't afraid of no Parkinson's - well, not much anyway.

I was diagnosed about 4 years ago and except for a couple of little quirks, I am fairly normal.  I do everything that I did before diagnosis - only slower.  I decide to document my descent (?) into PD in my blog.  Check it out at www.wpgchap.blogspot.ca.  As some creature in Alice in Wonderland said "Start at the beginning and go on to the end".   It tells a story.

In any event, a diagnosis of PD is irksome, but you live with it and the future should be looked on with pleasure, not distress.   Tell your fiance to exercise daily, about 45 minutes to an hour and he should get some relief and that, along with drugs, can make dealing with PD a lot easier.


#12

you look so said in your picture ! come on change it & give us a smile the summers here  smile


#13

Hi Gus and all,

Can anyone advise me I am getting pains in my feet,swelling over the bridge of my feet and ankles. This has more or less been ongoing over the last couple of weeks,do not think it is the meds as I have been taking those for four months. Is this another symptom of PD (I do not know). The wife thinks if I push the vacuum around more often this might help. rams57.


#14

might be something to do with the meds,ie have you been going to toilet as much could be water retention,gait painfull think you can have test done at gps something to do with what you eat & drink.or something simple like hard skin on your feet sounds strange but does happen,have you read side affects on tablets hope this helps ram.


#15

Hi Tiny

I'm so sorry that you are having to face this. I remember when I was told I had PD it was quite a shock, I hadn't realised the significance of the symptoms I had been experiencing.

I remember my husband and I went shopping after the hospital and all I could think of was what the neurologist had said. "You have Parkinson's disease". The words went round and round in my head for hours, it was awful.

I thought that life as I knew it was over and that I would have to leave work within a year or two and that I would be disabled.

One of the things that worried me most was the thought of having my driving licence taken away and losing my independence.

That was over three years ago now and my fears have not been realised. I am still working full time, in fact I was promoted to now manage a team of people despite having PD. I still drive and do the same things I have always done. It took a while to find a  mix of drugs to suit me but it was worth persevering.

It is easier to say than do, but try not to panic, this is generally a slowly progressing condition so nothing will happen overnight.

Try to enjoy your holiday

Caroline

xxx

 


#16

hi gus and thanks    you were right look at meds and i think its the domperidone i take for my nausea i only take it now and then .in its leaflet it warns about swelling in hands feet ankles,just shows you youve got to have youre wits about you all the time.   at least the hoover can stop were it is now  thanks  rams57


#17

if you go on med checker thats good.tells you about what meds are ok with each other interesting.glad you found what was causing it.ram


#18

Good Morning Tiny3003big grin

                    Please do not despair, although you are right to have concerns about the future you must live each day as it comes , I was 49 when told it was PD that was causing the tremor in my fingers and the difficulty tying laces and fastening buttons,but it was another eight years before I stopped driving, I could have kept renewing my licence but  my concentration was impaired so more for the safety of others really I decided not to go on, I miss driving I too made my living driving, vehicles of many and varied types Artic 40T  Dump Trucks, Excavators, 8---38 Ton,  Loading Shovels 28 T, Heavy Compacter Rollers 30T,   Artics 44T ,, Flats, 30T PLUS ,  also many other smaller vehicles and when I informed the DVLA they took all of those licences to drive the above away leaving only my car licence,  to say I was upset is a understatement, as I  had to resign and leave behind a job I really enjoyed plus all my buddies , I had been at the same firm for nearly 30yrs , it took a good while for the sadness to subside, but life must go on you must bend  and adjust to the changes parky will inevitably bring but the modern drugs are very effective at controlling all the symptoms and there is no reason to stop going on holliday, the old saying "cross that bridge when you come to it " is the way to face parky, do not fear or give up your lifestyle, bend be flexible constantly learn and make sure you have the right medication but above all  be strong  you will cope believe me if I can do it so can you, onwards and upwards Tiny its the only option.

                                                  Kindest Regards                  Fedcool

 


#19

Dear Fed

 

thank you for being so uplifting. Depending on your mood, personality and state of PD it can be difficult to stay positive. Your words will have helped a lot of people today.

 

thank you again

samdog