Parkinson's Disease

Sorry to hear that mate.

My brother in law has it, and has managed very well, has a supportive GP and is now 66. So far he has had to swap his car for an automatic, and just had the upstairs re-organised with an upstairs loo addition. His speech is slightly slurred, which he thinks is the worst aspect, as he does a bit of public speaking. I think he has been really positive about his condition, and his positive approach has been admirable for himself. He spends a lot of time enjoying life, travelling abroad, and well just making the most of it. He gave a speech a couple of weeks ago, at his eldest son's wedding,personally I thought it was the best speech by a country mile although I am sure a few people thought he was a bit 'pissed'..... not an unreasonable assumption, as he does like one....... This can be a dreadful condition, just wanted to post that it is not always as bleak as you hear.

That's a shame Gary, can't offer any advice only support. Good luck to your Dad and your family.

Hi there,

My father had parkinson's' disease and he had the obvious shaking symptoms from my earliest memories. It never stopped him taking me as a young lad to the park to play football with him. It was thought he had contracted something when he was in Egypt during the 2nd world war and was diagnosed early on his return.

It DID NOT effect him mentally and I did not observe the degenerative effect that Henry refers to. He was a Bank Inspector for Martins Bank before theu merged with Barclays and then took up a position within their Trust Company. He did the Times crossword daily up to his death.

In the late 1960's he had a pioneering brain operation which sadly had no effect at all. The consultant was none less than Dr Roger Bannister who ironically has been similarly diagnosed.

Getting the correct dose is important.

He lived a long life after retirement and died of prostate cancer.

An understanding and supportive family is important and a sense of humour which shone out of my father.

I am thinking of you.

Sorry to hear Gary.

My grandad had it but all I remember really was the shaking (his whole body shook) and the poor balance. It was a series of strokes that finished him off though not the Parkinson's. Sorry I can't be of more help and I hope you get all the answers and support your dad needs. Best of luck.

Another vote for talking to the doc about changing type or dosage of medication. My godfather has Parkinson's and used to have really bad tremor and balance problems, and from what I remember it took several goes to get the best medication balance for him too. He still has to be a bit careful, but he is SO much better than he was.

I have no experience of Parkinson's so can only offer my heartfelt wish that your dear Dad stays strong & that his medication is sorted very quickly. I know that you will give him all the support you can.

As relatively healthy 60 somethings, those of my generation can feel that serious illness is something that happens to others....Once your Dad is stabilised, I'm sure that positivity will return & you can build on this as NLA rightly states by carrying on as normally as possible but with more than usual family visits & treats. He is the same person he was before the diagnosis, albeit somewhat frailer so will probably be grateful for most things around him continuing as the norm.

As others have said, what a great place CL is. So many of us share our ups & downs, our worst moments and our best on here. And rarely are we judged. Oh that Life in reality was as forgiving & as generous.

VG, really sorry to hear your news. Hubby's brother has Parkinson's but everyone's story is different. His brother uses an exercise bike every day and things like diet are important. But another vote here for more consultation with the doctor. The following link may be of help as there is a lot of useful information. http://www.pdf.org/living_pd

VG - leaving aside Baldybonce's, er, interesting comment (Mick, what are you like?) I haven't heard from you and I wondered perhaps if you were concerned about meeting up because you would then have to directly confront what your Dad might look like one day. Well, if indeed that's bothering you please don't worry - I'm certainly no oil painting, that's for 100% sure, but apart from walking rather slowly and with a stick, there's little else about my appearance and outward physical condition which could be considered distressing. My offer to meet still stands, therefore.

However, if we don't get to chew things over face-to-face may I please take this opportunity just to offer you one or two thoughts from my own experience. Now, what happens to me could be completely different to what others might find, but if I can give you even the slightest reassurance or guidance, then I must give it a try.

There will definitely be things, already now and almost certainly more so in the future, that your Dad simply can't do for himself, or at least not without a struggle - don't forget that although PD stems from a deteriorating neurological condition it also makes heavy physical demands - it follows that any help you give he will much appreciate and it will ease the draining efforts on him as well. Then, there may be other things for which he might or might not need assistance; these issues you have to be more careful with - you can jump in and cover the job, no problem at all, but try not to make things a little bit too easy. PD sufferers are encouraged to be as active as possible, and a positive approach is a mighty fine drop of medication. Push him, then, from time to time in a pleasant but firm way, to try to do the thing concerned for himself. The action just in itself will give him useful activity, but I can't tell you how greatly satisfying it is for the PDer to feel that he has met and overcome the challenge by his own efforts alone. Find him these chances. Take him places - insist that he gets about a bit. If he's reluctant to go try at least a little persuasion: don't give up too easily. This is for his benefit, don't forget. One of my referrals for another opinion was to an eminent professor in Holland. In his early career he was a successful pro volleyball star, and he has a refreshingly direct and practical approach. (Btw, he's very athletic and looks like a movie star - how is it some people get to have it all ? I just hope he is built like a gerbil.) Ahem. One of his special anecdotes concerns a particular patient who seemingly was on his last legs - almost literally - and could barely put one foot before the other, but the Prof (he's a big bloke) virtually picked him up and plonked him on a bike. To general astonishment (no surprise, of course, to the Prof) the guy then proceeded to cover 10km in fine style. Just shows.

Lastly, there are the things that your Dad can comfortably manage and these are what will help him to maintain a degree of independence. PD obviously casts a sombre shadow over the lives it affects, but whenever possible you have to say to yourself that you want to control your own life and not let the bastard disease entirely control it for you. Keep punching !! Incidentally, in a paradoxical way it is no bad thing from time to time for the PDer to allow someone else to take care of a task, let's say, that he could have managed ok by himself but it will give the other person the chance to feel useful, to contribute, to be involved. These are the relationships that strengthen and help everyone cope. But independence is a very proud achievement. A small example: a few years ago I had a spell when my hands were reluctant to do what I wanted them to, specifically doing up the buttons on my shirt sleeve cuffs. It made me so mad, the sheer blind frustration of taking 5-10 minutes to do such a simple little thing, so I would ask someone else to oblige me. But I persevered, and found in due course that my hands were improving and once again I can now manage by myself - I can't describe how triumphant such a silly little thing makes you feel.

With PD all concerned are in for the long haul. In some ways that's not so good, especially if you have to watch a loved one slowly and gently deteriorate, not always absent of pain. But then again, how much more tragic is the life suddenly snuffed out by heart failure, stroke or dreadful accident. PD is not a hasty executioner - he's in no rush 'cos he knows you're his and he'll take you when he's ready. (Having said which, guard against those falls and instability - they can bring heavy damage in a few brief seconds.) Once again, take the initiative. Use the time you're granted - and it could be many years (Michael J Fox was diagnosed in 1991 and there he is, still in The Good Wife) - to bring the family together, to take it all by the scruff of the neck. I speak for myself, and I'm certain for many others as well, when I say that some (maybe too many) of the things I've done or said in my life were either stupid or just plain wrong, certainly nothing to be proud of, but my oh my, how much worse, more painful, were all the things I never did that I should have done and all the simple words that went unspoken and unheard.

Carpe diem - seize the day !! Go for it. Make the most of the time you've got - don't wish your lives away waiting for something that might not happen for years to come. Mobility is a very big deal with PD - keep moving all the time you still can. Respect your illness, of course, be sensible and practical, keep a steady watch on your meds and your general health, but stay positive, keep active, find new interests and rediscover old ones - and friends - and above all never give up. IIWII - It Is What It Is, nothing more, nothing less - so just crack on. Don't dwell on your misfortune, think instead of what you've been blessed with. In my case more than anything I treasure my two sons - none finer could any man claim - my new little grandson Jacko, my family, my partner (bless her) and my friends. There's everything to play for - as they say, life's what you make it.

I don't know if this helps. I'm not a physician so these are just my random thoughts, not pearls of medical wisdom, and it's taken me several hours to type this on what will probably be another night of broken or little sleep. Warmest regards to you and your family, VG and of course to the many others who've had to come to terms and live with this unpleasant condition. All the very best for the future.