Information Fears

WELL SAID BAMBI ...I MUST REMEMBER THAT SAYING...BRILLIANT, AND I AGREE WHOLEHEARTEDLY. THERES A LOT OF LIVING TO BE HAD AND PLENTY OF FUN TO LOOK FORWARD TO.....(SO PD STICK THAT IN YOUR PIPE AND SMOKE IT) lol

Hello again, HughesNewbie --

Just another thought for you to keep in mind . . .    You mentioned your dexterity and mobility as well as "other issues" becoming noticeable to you.  When I first suspected PD and was then diagnosed, I had rather rapidly developing symptoms: faulty sense of balance, difficulty using cutlery, shrinking handwriting, inability to swim, awkward carriage of my right arm, changing gait, and probably more that I am forgetting.  I delayed taking medication of any kind as long as I felt I could.  But once I started taking a low dose of Mirapex (pramipexole), all those symptoms disappeared within days!  You are observant, I feel sure; therefore, you will know when it is time to begin treating your case of PD with more than just positive thinking and exercise.

Keep enjoying the little things in life!  My best --      J

I can understand how easy it would be to sink into depression, I was diagnosed one month ago after a year of violent shaking in my right hand, several tests and scans to eliminate other causes, and eventually a Datscan which confirmed PD.

I have an 18 year old son with learning difficulties, he will never live independently and I am his main carer. I must remain positive, for his sake. I am a 57 year old female, dont smoke or drink, eat healthily, and walk a lot.

I have scared myself silly by reading info and watching videos about PD, to the point where now this is the only website I go on. It helps greatly to realise I am not alone.

At the moment I am taking only one rasagiline daily, it doesnt seem to have made any difference but I have  to trust my consultant and Parkinsons nurse, both of whom are lovely.

One thing PD has done is make me realise where my priorities lie, and from now on, if I want to do something I will not put it off.

The thought of suicide has crossed my mind, but I could not do that to my son, I must stay positive for his sake.

From now on, one day at a time, there are many many people worse off!

I

So glad you found this forum, gt50s!  As you say, it is a source of support and reassurance instead of fear.  For having been diagnosed only a month ago, you sound amazingly well-balanced and strong.  I think you are absolutely right, too, about doing what you really want to accomplish now rather than delaying.

I was diagnosed at almost the same age as you, but I had had symptoms that I didn't recognise as PD for about five years before that.  I have now had this disease approximately 16 years and am fortunate to be still in the first stages.  Exercise and the right combination of medications counteract my symptoms.  Also, I credit rasagiline for slowing PD's progress; I have been taking it many years.

Pursuant to the do-it-now philosophy, I am planning a lot of travel for 2014.  I wish you well and hope you will be able to do all you desire.

I was diagnosed last year at 43 following a DAT scan, basically PD affects everything on my left side , I was started on Rasagilene. I Informed the  DVLA who liased with my consultant and a three year driving licence resulted ,insurance were fine as were work who also took me out of night shifts .

PD has stopped me from doing nothing I still shoot though it has become a little more entertaining ! In fact it seems to me that PD largely effects movement in the default position and when an intended action takes place it briefly ceases to get in the way -I shake with the gun but at the moment of the shot it works ! I managed a 100 mile cycle ride last June albeit somewhat lopsided, I am now experimenting with different positions on the bike to minimise the problem as my good side did have a numb hand for a month or so after the effort .

This year I am lined up for a 100 mile charity ride for a learning disability charity in August as well as  a skydive in April for a Parkinsons charity . Last November I went to New Zealand and this November I will be off to Australia . I continue passing my accountancy exams and life goes on. The PD is a nuisance sometimes embarrassing, sometimes it hurts, but it does not stop me, life has chucked in an obstacle thats no reason for it to stop .

The PD diagnosis has lead me to meet some inspirational people in my local young onset group whom I would not otherwise have known and has sharpened up the need to do things while you can  which is a universal truth nobody knows what the future holds ,I do not mourn the life I would have otherwise had as I did not and still do not know what that life would be .

What is certain is that I will take every opportunity to make the most of life regardless of PD. The cooler weather and lack of daylight have made my symptons worse  so i have started some Mirapex and am slowly building up dose to therapeutic level . All in all life ain't bad , to borrow someone elses saying - I may have Parkinsons but parkinsons does not have me .

Hello, iceni --

You can hardly be commended highly enough for your attitude and accomplishments.  I admire your general philosophy of life (at least as reflected in your post).

One thing you said rang a bell for me:  your comment on the "default position" being affected.  It is true that PD has its strongest effects when the hand, arm, leg, whatever is at rest.  As one doctor explained it to me, the body has a new concept of the natural or default position.  My problem is using a knife correctly.  My right hand is convinced it is holding the knife in a position perpendicular to what I'm trying to cut.  But if I look at it, the knife is really at an angle, thereby causing trouble.  So I can understand how that would translate to shooting or almost any activity.

May you continue to do well!

I am intrigued. Would it therefore be possible to shoot the Mother In Law and say it was due to the default position being affected? My wife would never forgive me but would the police?

On a serious note Icini your achievements are quite astounding. More power to your elbow, not forgetting the left leg of course.

Morph

What an inspirational story you tell, it is so uplifting to read how others cope, of course in the early stages it is easier to pretend one does not have PD, as I try to do until my right hand jumping around reminds me.

My hand does not shake when I am engrossed in an activity, therefore I have taken up knitting, which also serves the purpose of keeping my fingers moving and making me focus on something. I have never had so many shapeless sweaters, but at least they keep me warm as I am constantly cold! 

I am looking forward to the warmer weather so that I can get into the garden and plant some veg seeds,and potter around tidying up - I love being outdoors although I am not as adventurous as you!

I find making plans helps too, treats like booking a holiday or going to the theatre, in fact, doing things I would normally do anyway but not putting them off!

The cold definitely makes my hand shaking worse, as does being anxious, which is fairly constant. If I am in a situation where I think people will notice my shaking eg. hairdressers, dentist, library, optician ( pretty much any public place) then my hand plays up no end. I wish I was not so sensitive about what people might think. 

There is a PD group local to me, I have not ventured there yet but I am pretty sure I will in the not too distant future. In the meantime, I keep up to date with this forum and find it a comfort and quite inspirational.  

Hi gt50s. Yes, the cold, yes being anxious.

But i don't think it starts with worrying about what people think: the shaking comes first - because it's always there - and then the realisation that people are watching might start me off shaking more. I sit on my hands a lot! (Difficult when you're standing up speaking.)

Semele

Seeing others experiences with PD is invaluable, forums like this are brilliant for gaining an idea of what to expect though we are all a little different . The warnings on here of the potential side effects of meds such as Mirapex are very useful to be aware of  but also the posts by some saying positive experiences with meds are equally as important to me when making decision to start . As humans we tend to reflect the negative more than the positive I guess it makes sense that when it works we feel no need to say anything and when it doesn't we say so .

My local young onset group is great for bringing home to me that PD need not stop me from living for a good while to come .One lady in our group was diagnosed in her early twenties has had a family and holds a job now more than twenty years on from diagnosis still works despite freezing and falling problems, what excuse do i have ?Others run their own business . 

I don't intend to broadcast that i have PD however the word tremor rather understates it ,my arm starts to tremor then goes rigid from the shoulder so its more of a judder and obvious odd movement to bystanders on a bad moment the neck and leg join in, so I say its parkinsons and have found thus far people to be accepting and generous once they know .

I work in forensic psychiatry and facilitate anger management ,arson and sex offender treatment  groups as well as working in wards it is not possible to hide the shake so I am honest about it and by and large the patients are fine with it once they know and sometimes compare notes to their own shaking side effects due  to anti psychotic medication that works on the dopaminergic system .Work have been good to me, I have worked for the last 24 years in the admission wards which tend to be more volatile ,being honest with work about it all I was moved into day services and out of the shift rotation which has helped me and reduced the number of violent situations I am exposed to . 

If the left hand is occupied it is happier when I am metal detecting I carry a spade in my left hand and it stays happy and curiously the leg seems ok despite my concerns about being on uneven ground . The shooting works to as I mentioned before though if you need some space around you being a parky holding a gun clears a path !! As for the mother in law Saturn I was relying on the impulse control dissorder side effect of the Mirapex to get me off the hook !! lol. The nike slogan of just do it holds true I have found that I can generally do more than I think if I try , like hanging doors and cutting worktops for friends kitchen recently , the shake on the chisel was a nuisance but not a show stopper . 

Last year when diagnosed I found it useful to read Micheal J Fox books and The Parkinsons disease treatment Book by J. Eric Ahlskog . Stay positive !!

Hi All, 

I like coming on to read proactive stories and triumphs of longevity- I/We all need that hope.

I've taken a few days off the site recently though as some of the more full-on anecdotes are just too much for a newly diagnosed case to absorb. I'll be discussing meds with my ND next week so hopefully the subtle symptoms I have can be controlled even further without the side effects giving away my PD diagnosis to strangers!

Paul

Hi Paul 

There are some good meds and many manage to keep it to themselves, one lady in my group travels some distance to the group as she has told no one where she lives she has it, not even family . Micheal J Fox describes keeping it secret for 7 years including during the filming of back to the future sequels .We all have to come to terms with it in our own ways I've found people to be fine when they find out .Its alot to take in, I have found J Eric Ahlskog a good reference. Theres alot of life in you yet !

I'm 165 years old Paul. I put it down to my meds. I'd like to tell you about it but I can't remember What a shame. They have given me 15 years to live.

Morph

like to know what meds your on.or is that a secret

It's a compound of ..............

"Eye of newt, and toe of frog,
Wool of bat, and tongue of dog,
Adder's fork, and blind-worm's sting,
Lizard's leg, and howlet's wing,--
For a charm of powerful trouble,
Like a hell-broth boil and bubble."

I take it with a glass of brandy every night before bed. If you survive the first batch you live to be 180.

You live to be 180, but call yourself the Thane of Cawdor and inexplicably find yourself running nightly into the woods to look for caldrons.  Not much of a life . . .

It's a hard life J ........but someone has to do it!

I rest in veils of deepest blue,

As night draws on I search for you,

With naught but mischief on my mind,

Beware I'm not of worldly kind!

Check your windows, check your doors,

In the cupboards, under floors,

Was it wind that made that sound,

Or was it me a creeping round?

 

OMG J the Morph has been invoked! (My poetic effort for the week, such as it is)

 

Morph or Orph or even Saturn,

You have your own poetic pattern.

Rhyming lines two by two,

You write a poem that's -- well, er --new!

I'll take what I can get, however:

Men write me poems these days nigh never.

J

Hello

 

   You know that daft song " it goes I fall down I get back up I fall down again I get back up" or words similar to those, well thats Parky if you are preparing to top yourself without getting stuck in, then there is nothing anyone can do to make you fight back, I have had many mishaps since 1999 at 49 yrs, and yes I also dicussed with my family and  Consultants about visiting Dignitas if I became a cabbage, but I have learned much  , not  just about PD but myself,I have pulled myself out of hellish situations simply because I will not stop fighting the evil that is pd,,so many horrible things endured and defeated, yes its hard but nothing worth fighting for ever comes easy, dont waste your life,you have many good usefull years ahead,  we have just lost one of the great contributers to this Forum ,Dr Jonny, died in his thirties  a brilliant man his input has been lost to us, your input is just as valuble as any do not throw it away, learn about PD join Parkinsons Groups and prepare for the long road ahead ,if I can do it you most certainly can.

                                                                  Kindest Regards  Fed

 

Listen to your uncle Fed, HN, he knows what he is talking about.

If you still doubt, then post one to BA, she has had it for 40 years and trust me, she is still fighting it with everything she has got.

Fed referred to Chumbawumba in his post, I likewise refer to a song, ''It don't come easy, you know it don't come easy'' (Ringo Starr).

As my Doc said to me, we all gotta die of something, but it is not likely to be PD......thats just an annoyance we have to contend with.

We all gonna have bad days, but in the mix will be some laughter, some joy, some music, some friends, some beer, partners and so on.

Unlike Fed however I refuse to become a cabbage.......I'd rather be a sprout and at least have the last laugh by making someone f*rt.

I have a bucket list, I shall get as far as I can. I will have no regrets when the time comes to fly the Astral Plane.

I know one person who'd swap my condition for hers right now. She was told she has app 12 months (Not PD related).

She has said, ''no way, it's not long enough, I want 5 years and I intend to have them''. Like BA she is fighting with everything she has. We (my friends and me) are all supporting her.

Don't wimp out, Morph.