Friend newly diagnosed


#1
Hi,
My friend was recently diagnosed with Parkinson's (aged 42). The Dr decided not to put him on medication straight away as his symptoms were not affecting his life too much. It's now about 2 months after his diagnosis and he has gotten really bad. He is noticeably slower and feels very uncomfortable all the time. At social gatherings he often has to walk around a lot or go and lie down. He feels a compulsion to walk/move all the time and walks with his back straight in a kind of shuffley manner, with one arm usually straight. My question is, is it usual for people to go downhill shortly after diagnosis? Could it be stress that is causing this? He refused to go on any anti-depressants to control a high level of anxiety he is experiencing. In your experiences has this helped you? He had emergency appointment with his specialist and was given trial medication (dopamine). So hopefully this will help.
Any thoughts/advice appreciated.
Thanks,
Iris x

#2
I remember that my symptoms were worse immediately after diagnosis, and I think this is natural, because you feel so shocked, and all those strange symptoms have suddenly got a name. And of course you worry for the future. It is amazing to me how much anxiety and stress can impact on the physical body. So it is maybe a good time just to take stock, become used to the situation (because it is not that different from how it was the day before diagnosis after all) and perhaps take up some relaxing activities. I know it's easy to say 'relax' but actually that's what is needed at this difficult time. He needs to treat himself and pamper himself a bit! I wish you well, let us know how you go on. Above all, 'Stay Calm and Don't Panic'!:smile:

#3
Thanks Melody,
It's good to know that it's normal for symptoms to appear worse after diagnosis, although I am very sorry that you and my friend have had to go through this. In your experience, is the medication likely to make much difference in his life? Will he feel "normal", even for a little while? I know that it is different for everybody, but it would be good to know your experiences, and those of anyone else out there who would like to respond too. Because he's gone downhill so quickly, we are fearful that perhaps he might have a severe form of the disease. He refuses to get tested to find out if his symptoms could have a secondary or different cause. I guess if the dopamine words then we know that he actually has Parkinson's.
Thanks for your response. It really helps to hear other's experiences.

#4
Hi iris11 I`m sorry to hear about your friend but as melody said don`t worry it could be the shock/stress making him worse. I found at Christmas i was so stressed my symptoms were the worst they have ever been, like you i thought this was permanent. A long rest and stress free few days and i felt much better.

I hope the meds he`s taking are helping? in my experience (which is only 2 years from dx)its trial & error with drugs and you have to give them time and hope the side effects wear off!

Please keep in touch and pass on my regards,

Big C

#5
Stress is accepted as the number one enemy of Parkinson's, and it can bring on specific symptoms literally in seconds.

In my case anything which would simply make a normal person "jump", like an unexpected loud knock at the door or even the phone ringing, often creates a surge of adrenaline/dopamine which then causes me to freeze to the spot like a statue. I genuinely cannot move a single muscle (fingers, limbs, neck etc) for up to 20 minutes. It then gradually wears away.

Cumulatively I've found that the more stress there is in your life the faster you deteriorate, so I've got no chance living in Hull, LOL!

:laughing:

#6
Thanks so much for your responses. I can't tell you how comforting and helpful they have been.
Cheers,
Iris :laughing:

#7
Hi Iris
I hope you're feeling calmer now, I know how frightening it is. I have to say that many of us get all caught up in the Meds thing - what to take, when to take it, try this and that, etc., and after a while, it will all settle into a manageable situation, that I can promise. Try not to let the doctors/meds throw you into panic. You need to try and judge for yourself, because as you have probably realised, Parkinson's is a very individual illness, so it's horses for courses I'm afraid! The best expert on yourself is yourself, that's what I think!
(Tamsin, previously Melody, please see 'Meet and Greet' for confusion story).

#8
Looking at it a different way one reason symptons appear to get worse more quickly is because that is what is happening. I knew there was something wrong for a fair while before diagnosis (and had a good idea what it was) but it was when things started to get worse more quickly I went to the doctors.
In my case I seem to have bits of rapid decline then level off for a while then another dip. This may be what you are seeing here.
When the meds start you might see some scary stuff at first and every time doses or meds change. This seems to be farly common too.

#9
I agree with all your comments .

#10
Hi iris
Like your friend I was dx and symptoms got worse.stress is a big part.once dx you try to think how long have I had it,then try to compare to how long you've got left.what if this happens,what about the family and kids.what about future plans.
I was dx in nov last year and go to Tenby every year.cant do that now to far to drive and to hilly.so last weekend I bought a caravan at Skegness to relax and chill out at the weekends while I can.what I'm saying is don't let pd rule your life.bring your future plans to the present if you can.hope this hel
S

#11
Hi Iris11
Like your friend i am 42 yrs old and just diagnosed last September,like most of the team on here our symptoms all vary.I agree the stress factor does make you feel worse and I also think that immediately after dx you do tend to feel worse whether or not its just the initial shock I really do not know.I recently took a wee overnight stay with my good lady just to get away from everyday surroundings and found that this helps you to relax.......try encourage your friend to take some time out and just chill, i wish you well and hope this works for your friend.

#12
Hi Iris

I found out on the 8th of Feb and what a shock it was after being told by the Doc that theire was nothing wrong.

I came out from visiting the Nuro a diferent person and for a week I was in shock however I have a strong wife who just kicked me up the bum, said well your not gonna die from it so we have just got to handle it. A very positive lady.

A positive attitude is the no1 thing you have just got to say hell, lets get on with life. I do a lot of work from home so I just said *?$" I gota do some work and bit by bit you get used to it.

I do think that the stress is the issue when you firs find out, it was with me for sure but know ive gone back to my pre Dx self.

Hope this helps a little

Steve

#13
Hello Iris,

what a wonderful friend you are. I was dx at 35 and am 42 now. Again, as is usually the case with pd, my situation was different in that nothing seemed to change regarding symptoms for the first 4 years or so but then had a huge amount of stress at work....long story.... and my symptoms have worsened since then. I remember when I was first dx, I went to London to see an important cosultant because I wanted a second opinion as refused to believe I had pd at 35....denial is an arrogant thing! So he said that the worse thing for pd is stress, it will effect minor symptoms massively. Now it is easier said than done to not get stressed when your body starts to argue with you and mine seems partial to twisting my legs into poses that a contortionist would be jealous of. I have also developed the shuffling movement that you mention your friend has. difficulty is, these symptoms stress me out as firstly it hurts and secondly i get embarrassed when they happen in public....lots os sweating as muscles contort, cannot stand up etc....not pretty and stress makes them worse!!!!!!!! what does help though is that the people around me dont get worried/anxious too. you sound like a great friend so keep on being positive. Sending good vibes to your friend x

#14
I agree with everything said and all I can add is our experience is that under stress from time to time with parkinsons you get some really scary symptoms and what I have learnt is to think this symptom will go away in a few minutes or in the morning because basically parkies is very slow, the scary symptoms can be freezing which can include being unable to talk, hallucinating badly, being confused about where you are and who is who, my h has had all these but none of them are part of our every day life. Our every day life includes slowness, a bit of freezing of limbs, some hallucinations which we mostly laugh at love sunray
ps although my h was dx in 2005 and he is 72 now I can remember in his forties never being able to sit for long, having restless legs, having to walk about a lot cos legs hurt, being unable to hold his hands above his head cos they ached, falling off to sleep in the middle of things then being hyperactive and dashing about and exhausting everyone, so was this parkies? most probably yes beginning thirty years ago