Newbie Hello


#1
Hi everyone

I'm 44 and male and just diagnosed. Have stiff shoulder and a slight tremor that also means my left hand is slower than my right.
I'm obviously anxious about the options and wonder what the future holds now. Not positive but think I'm going to go on low dosage azilect from what my consultant has said


Anyone got anything positive for me to hear, or is it all down hill from here?
Are medications likely to be able to stop my tremor, speed up my hand and enable me to get on with my career using a pc keyboard cosidering that I may have 20 years left of my career?

Am I likely to ever feel 'good' again?

Any feedback really appreciated, probably just need cheering up a bit

#2
I think we all feel upset when we are first diagnosed with PK. You now know that you have PK and you must look ahead and not let yourself think that your world has come to an abrupt end. There are some good people at Parkinson's UK and are always ready to give all of us plenty of support. Have a positive outlook and live your life to the full. Keep your chin up.
Regards
Sparks

#3
Thanks for taking the time to reply with kind words appreciated

#4
Hi Reckoner and welocme to the Forum.

When first dx it is so difficult to be positive isn't it. Although much older than you when dx the same thoughts went through my mind - is this the end of my world - well I suppose being truthful, yes it is but only the world that you once knew. You will still have adventures, days out with your loved ones, relatives and friends. You will still make many memories to hold and to treasure.

I can only tell you that when dx my o/h and I made the decision to live each day as it came along. There are good days, bad days and to be honest some really dreadful days but we have got through them all. Meds can and do make a big difference and we adjust our life to each new situation that comes along.

Will you ever feel 'good' again you asked. I've forgotten how that feels I must admit but I know that I do have (sometimes) long periods of time when I don't feel too bad. PD affects all of us in different ways and nobody can tell you how it will be for you but what you will find here is that all of us will help where we can, support you when you need us and advise if we can.

I hope you find the right path for you - I'm sure you will given time

Pebbles x

#5
So sorry to hear about your Dx. I remember that feeling very well. I thought in a year or so I would be unable to work or do all the things I love to do.

That has not happened at all. Once I was on the right meds for me I was almost back to my normal self. I still get a slight tremor when I am really anxious but it is much less apparent.

I am now nearly two years post Dx and am still at work full time, still cook, clean, drive etc (just finished Christmas shopping)

Many people on this site have continued to work for 10+ yeas after Dx.

One thing to remember is, keep a positive attitude it really does make a difference, talk to someone about how you are feeling and tell all your friends family and work colleagues straight away then you don't have the stress of trying to hide the symptoms.

Azilect is a good starting point and can make a big difference but if it doesn't help you there are plenty more to try.Give yourself time to adjust to the idea of PD and then get on with life.

Good luck

Caroline.

#6
It is easy to focus on the worst scenario when first diagnosed. In reality everyone is different and some of us find it progresses very slowly. Personally I am still working full time (when lots of my 'healthy' friends are retiring or cutting back to part time), have learned to type onehanded (including an entire book manuscript) still drive (changed to an automatic from choice not dire necessity)and still do my share of household chores. I have been diagnosed 6 years, take no meds and look forward to them improving the meds/surgery options so that one day I will feel I am getting slowly better instead of slowly worse. I was 52 when diagnosed and it took me about 18 months to get my head around it all.
Best wishes

#7
Hi

Thanks to each of you for taking the time to reply. All of your advice has been very helpful. Appreciated.

I suppose I'm also concerned that at 44 I have so much of my life left to go and wonder if I'm one of the younger people on this forum to get parkinsons?

#8
Welcome Reckoner,
I can't add much to the excellent advice you have already been given except to emphasise that its true. It takes a while to get over the shock of the diagnosis but when you do you will realise that your life isn't over and neither is your ability to enjoy it.
At 44 you are at the young end of the scale but not exceptionally young. I was diagnosed when I was 39 and was surprised to find that 5% of people with Parkinson's are diagnosed before 40. 8 years on I'm still working and still find that people are surprised when I tell them I have Parkinson's because it doesn't show.

Elegant Fowl

#9
and another thing.....

you mention use of PC and keyboard for work.
Dragon Naturally Speaking is a rather gorgeous application that allows you to use speech to control a computer. It takes a little bit of getting used to but can be a lifesaver.
You probably don't need it just yet but it is worth knowing that it exists if one day you do need it. Shout if you want more detail - there are quite a few dragon tamers in the forum.

EF (typing this with one hand :-) )

#10
I'm obviously anxious about the options and wonder what the future holds now. Not positive but think I'm going to go on low dosage azilect from what my consultant has said - AZILECT ONLY COMES IN LOW DOSES. IT BASICALLY MEANS YOUR NEURO THINKS YOU HAVE ONLY VERY MILD SYMPTOMMS AND IS GIVING YOU THE MINIMUM TREATMENT


Anyone got anything positive for me to hear, or is it all down hill from here?
ITS A DEGENERATIVE DISEASE, THAT MEANS DOWNHILL - BUT!!!! I WOULD EXPECT IF I WERE YOU A VERY SLOW CROSS COUNTRY SKI RATHER THAN A SLALOM OR A SKI JUMP! THERE ARE LOTS OF VERY VERY PROMISING SCIENTIFIC ADVANCES GOING ON SO THERE IS A VERY GOOD CHANCE OF A SKI-LIFT BACK UP THE MOUNTAIN BEFORE YOU REACH THE POST-PISTE

Are medications likely to be able to stop my tremor, speed up my hand and enable me to get on with my career using a pc keyboard cosidering that I may have 20 years left of my career? I AM WIRKON WITG A KEWBIRD FOUR YAETS AFTRE DIGANOSS. NO PTOOBLMS.

Am I likely to ever feel 'good' again? DEPENDS ON YOU. IF YOU GET THE RIGHT MEDS AND CARRY ON LIVING YOU WILL HAVE GOOD TIMES.

Any feedback really appreciated, probably just need cheering up a bit
ALLOW YOURSELF TO BE SHOCKED AND OCCASIONALLY MISERABLE AND THEN DO ALL YOU CAN TO GET THE KNOWLEDGE TO FIGHT BACK! DON'T THINK DECADES AHEAD, THERE WILL BE NEW TREATMENTS. OR A NO 24 BUS. WHO KNOWS.

#11
Elegant fowl - great advice thanks. Turnip - :-) cheered me up thanks

#12
Hi Reckoner,

I was 44 at dx, I'm now 49, I'm still working daily and I get on the Wii fit most mornings and usually manage a Wii fit age below 30.

Progression, meds, personal approach all vary for us. My meds do indeed manage to deal with the shakes most of the time. Ref your stiff shoulder, my PD nurse drummed into to me to keep it working. I now wear wrist weights, 1Kg each, whilst I'm on the Wii, stiffness mainly gone most of the time, muscle tone looking better than when I was years younger LOL....

I try to maintain the idea that I can't beat PD but I must never let it win!

PD generally doesn't mean the end of everything but more often a case of doing lots of things in a different way.

Hope this helps along with all the other responses to your original post.

Regards Tractorman.

#13
:grin:
Hello Reckoner , you are young use this to your advantage,it is essential that you stay fit at 44 you probably think as I did , that its unfair and its giving PD a long time to develop ,after all if you live another 46 years that will take you to 90, does that alarm you. I was diagnosed with PD in 99 and of course Ihad to inform DVLA who rewarded me for my honesty by removing all sixteen licences I had crefully built up over 47 years the only remaining document was my car licence but that had to be renewed every year, this was a massive blow and eventually I gave up driving and now my Driver/wife takes me where I want to go. Now at this point you are probably thinking when is this guy going to say something to cheer me up. Well I am 62 now and yes PD has taken a lot out of me but I never give in to it,there are times when you will feel, well unwell, sorry I am not trivialising what is a very serious situation but you must fight it do not let it beat you if you stay fit in body and mind and persue every bit of knowledge that gives you power over the beast, join self help groups,I am a member of a little band of Brothers and Sisters and together we overcome any difficulty , you can live a full and happy life , you might even make 90.
Regards ( fedexlike) :grin:

#14
Hi Reckoner
Welcome to the clan. Yes it feels like a kick in the rear end when you first get diagnosed. How to keep positive - well that a good question. Look around you and you can always find someone worse off than you. Just read through the forum and you will find a lot of people there who will help you stay positive. What affects you may not affect someone else the same way. As to your PC work just keep pushing on with it an d see how you go. Deterioration - if any - may be slow to show itself. Keep on with your normal day to day activities as long as you can. If and when things start to get on top of you, come and read the Forum - there are some crazy people on it who are a laugh a minute - they will soon raise your spirits. Keep smiling.
Chunky

#15
Thanks tractorman, fedexlike and chunky appreciated

#16
Hi Reckoner
Similar story. Diagnosed about 7years ago, I am still at work full time as a teacher.
Lazily I haven't read all the posts before mine but here is my two pennyworth.

I've got worse but slowly enough to adjust. Here are just some random thoughts.
#1 get to like slip on or Velcro fastening shoes
#2 unless you get the voice aacivated softwaare get used to your typing looking like Dutch with doublee letters aplenty
#3 consider an automatic car. I'm most affected on my left side and my wife was getting scared by my 'speed of a lethargic sloth' gear changing until we switched!
#4 accept there will be bad days and worse days in amongst the good days.

Mathsman

#17
hi reckoner, i was diagnsed 9yrs ago and have jjust had to give up my job but its not all doom and gloom honestly life with pd is what you make it having a posative attitude does help i can still do most of the things i could before but at a different pace, you just have to adapt your life style, i recently went to a outward bound centre for the disabled with my local pd group it was brilliant i did the climbing wall i absailed i went on the trapeeze it was a brilliant day my hubby just sat and watched but my point is you can still have a good quality of life and the good days can outway the bad sometimes of course i have my down days but i am not someone with a depressive nature so i always seem to be able to pull myself up try to have a posative attitude and dont let it get the better of you remember you are still you and always will be just a slower version, sue.