Article in today's Mail on Sunday

Hi Bigbee - yes, peoples' postings have helped tremendously.

However, there hasn't been any news from folk past the ten year mark who are still reasonably active, which bears out Turnip's reckoning which is what my husband's neurologist told him. Namely that generally for the first 5 years the meds can control symptoms quite well, the next 5 years reasonably well, and after that he just shrugged.

I guess one has to live in the moment, and not let fears of tomorrow spoil today.
Sorry, I've only just read this so it's a very late reply to your original and now repeated question - just to say that my husband was diagnosed 12 years back and is still pretty active - travels, works (though past retirement age now) etc. Yes, the Parkinson's is a major restriction but he still does lots. He's in much better shape at the moment than he was for much of the past year, thanks to a major review of his medications, plus at last getting linked in to proper physio and a movement clinic. Hope this is some encouragement! Best wishes to you all.
I find that reading all the latest clinical research news cheers me up no end.
There have been some exiting developments recently. Particularly in the field of stem cell research. I think there is a good chance that PD will be largely curable by the end of the decade.
Hi Budgies,

That is pretty much the opinion of the neuros who have consulted us. Five years with minimum of probs should be attainable. The next five years will be somewhat of a struggle (this second statement was implied rather than straight-out said). Obviously this varies from person to person and the younger folk will generally do well for longer, as perhaps will, the ones who do not take levodopa up-front. Mum is late-60's and started on levodopa immediately so is probably in the worst-prognosis PD camp. I actually felt better hearing this as when our GP said mum had Parkinson's I thought the end was nigh and before the end was high-hell torture. :cry:

Potplant: has you husband had DBS? Assuming he is on levodopa, has he been on it for long? That is definitely a feel-good story, well done to you both!

Christo: I wish I shared the same optimism. I read a few stories and seen an interview or two where those interviewed (Dr. OZ et al) said the cure is no more than 5 years away, and these were mid-2000 interviews. When the cure is found let's hope it applies to all PD sufferers, irrespective of their stage of PD, age etc and the cost is not prohibitive.

On a brighter note, check out the latest (24th August) news:

http://news.scotsman.com/news/Cure-for-Parkinson39s-a-step.6823978.jp

Best wishes,
rico
Hi Rico,
what do you mean by 'the early ones who don't take levodopa up front will be better off'? I've been prescribed Sinemet and had it described by my neuro as the 'gold drug' I only take 3 62.5mg tabs a day and refuse at this stage to take any more and was relectant to start it (or any other tablets) in the first place! I've also since read it's better taken later down the line although my neuro suggested it was better to start now? Help anyone........? a bit confused to what is best!:disappointed:

Diane
Hi Diane,

The ones who take Levodopa up-front "perhaps will" not do as well as the others. I used those particular words because the research is inconclusive. Some research shows leaving levodopa until later delays motor complications (on/off fluctuations, dyskinesias). But then again it all comes down to quality-of-life, better good QOL today than "suffering" for a not-so-guaranteed brighter future?? Again different authors have wildly different views on this.

Levodopa is, as your neuro described, the "gold standard". What a sad indication that the "gold-standard" is a 1960's drug.

62.5mg is a sub-standard dose so you have time on your side to do more research. PM me if you want me to forward you some research papers I have amassed, if you think it may help you.

Good on you for taking control of your treatment! :smile:

Best wishes to you,
Rico
Hello Diane, Ive been dx for 11 years now and for the first 4 years I was prescribed DA's. I was taken off them due to adverse reactions and started on levodopa 7 years ago. I have just posted something about this on meet and greet in response to chorleygran. You might want to take a look.

Feel free to pm me if you wish.
regards
Glenchass
Thanks to you all for your contributions.

Potplant: your reply cheered me up considerably, so many thanks for that, and I hope your husband continues to do well for many more years to come.
Particular thanks to you too Rico. I'm just hoping that before the first ten years are up (which fingers crossed will be tolerable) there will be better medications on the market - I'm thinking a cure is too much to hope for. Apologies for the negativity, butI believe I read that Michael J. Fox also is now resigned to not seeing a cure in his lifetime.

This doesn't mean that there won't be better/more efficient drugs on the market in the not too distant future, surely?
I am in my 10th year of Parkie. I still use the Wii everyday ( Tennis and fit/balance games) and I'm a member of a local band - can manage the clarinet - which takes a lot of dexterity and fine motor skills. Although there are times when I need assistance with some tasks, the medication is generally allowing me to follow my interests. 3 years ago I spent 8 weeks in Australia and NZ. Medication -
6 Stalevo per day, 1 rasagiline and 14mg Neupro Patches. Also a dose of Seroxat for luck!

I was in the Co-op recently and watched a man "Penguin shuffle" across the road. He held his arm stiffly as he wandered around the shop and joned the queue for the till just behind me. Hello I said - he smiled...How's the Parkinson's I asked...He smiled and answered ...Is it that obvious? You don't have to put up with a shuffle, said I .....but I've had it 2 years now, he said, with a resignation in his voice. He could not believe I was in year 10! Sorry if this sounds a little smug - it isn't meant to. I merely want to illustrate tht it is a combination, I believe, of good Health Care support and a positive attitude that combines to hold back the progression of PD.
Yes, I've cried, shouted and cursed this bl**dy condition but I won't let it be in charge.
Gosh, what another hugely heartening post Flossie - thanks so much for sharing that with us.

My very best wishes for the future.
Hi,
I am in my 12th year since diagnosis and manage to "get about a bit" with assistance from my wife.
I have a wheelchair in the car boot which I try not to use. We use it mainly at airports where it ensures that I board the plane first and proves useful with "air ambulances" at the destination airport. It also attracts the "does he like......"? character, who assume that you are deaf and probably blind.
The best one so far came in the in the shape of a female security officer at Leeds Bradford airport, and, in a voice akin to Hilda Baker, wanted to know "does he have a mobile..."?. I replied that I did have a mobile and that it was at home.
In Great Britain, I have found through experience that if you answer any question with the word "Wednesday" it usually suffices.
I also supply one or two "home spun anomalies" such as "when it's midnight in Italy, it's Wednesday in Gt Britain", or "it's a small world, but I wouldn't like to paint it!, and last, but not least, "If things don't alter, they'll stop as they are!"

For the last 6 years or so, we have been going to Greece around Sept/Oct time as it is still hot, but not blistering.
I've found that the heat is good for my legs, all aches and pains disappear, and provided that I follow the time schedule for my medication I can walk wherever I wish. (If you transport yourself by wheelchair, you will experience local people touching your hair, arms and legs as they believe that you have been given the ailment by God to carry as a sign that you are special)(shows how much he knows!)

On a final last note, my wife and I decided to go to a local Indian restaurant.
We were accompanied by our grandson and I was wheeled in and treated like royalty.

The waiter asked our grandson,(aged 5) what he would like to eat, and grandson, who is a lover of Thai Green curries asked if they had any "blue curries". When told that they didn't, he immediately ordered a combination of various dishes and proceeded to talk food with a junior chef.

At the end of the evening, I rose from my wheelchair and walked to the front door
unaccompanied. The staff were going to telephone the local newspaper and tell them
that a miracle had occurred and it may prove a cure for Parkinson's !
(If only, if only.)

Cheers, don't give up, it's a b.....d, tell your mother !

Rhino.
When I was diagnosed 10 years ago, my consultant said to expect 10 years of reasonable quality of life. Admittedly I've had some terrible periods (mainly after changing medication), but on the whole I've coped, and had some rewarding times. I've met people who have had PD for over 20 years and are still coping, so I'm planning on at least a further five years.
The redeeming feature of PD is that you have time to adjust to your deterioration, and that helps. What I achieve in a day is puny compared with my hectic lifestyle of 15 years ago, but no less satisfying (in some ways it can be more satisfying because I am not expected to keep up with the rat race, so I have more time available to savour the best moments).
Having PD is like being assigned Mt. Everest to climb, while most other people are given a small hill. Everest is hard work, and treacherous in places, but you also get the chance to take in the scenery, and at the end of each day take satisfaction that you have climbed a few more metres towards the summit. The wise thing is get on with the climbing; the unwise thing is to wish you were climbing the easier hill.
Good to see the 10+ year PDers coming out in response :stuck_out_tongue: Very encouraging:exclamation:

Cheers for that budgies! Agree with you about the need for better meds to be on the market. Am hoping for (at least) five years of good response from meds for my mum but will obviously take each day as it comes (as she also has very high blood pressure + breast cancer).

No need to apologise for the negativity. We all go through that. Many call me a pessimist with this PD disaster but I prefer to call myself a realist :smile: It is what it is. See Welshbear's post for a similar viewpoint. Whilst discussing condition with neuro he repeated the usual Parkinson's doesn't kill you tune. Which made me ask, if someone dies from an infection or aspiration pneumonia as a result of PD, can the death not be put down to PD? To which the neuro said we are looking too far down the track (good response from him :stuck_out_tongue: ).

If Michael J. Fox is resigned to not seeing a cure in his lifetime, we must be in dire straights (assuming he has 30 or so more years to live). I think the answer may well lie in between thi figure and the figure of most optimists (5 years).

Is it too much to ask for "disease-modification: breakthroughs? That is, tablets taken (or any other form of medical intervention) to stop the disease from progressing? DBS has been a brilliant breakthrough but age or costs usually gets rid of potential candidates. But even DBS does little for the *underlying* disease progression. PD still gets worse, gradually or less gradually.

Another problem is the time taken for the drug to reach the market (generally 5+ years on a best-case scenario).

Now back to reading those feel-good stories of recent posters on this thread :laughing:
September 6th 2011 will mark the beginning of my tenth year in which i have officially been living with this illness called Parkinson's disease.

I shall never forget the date because i remember leaving the Hospital appointment having just been told i had PD and driving to Heathrow airport. I boarded a plane heading off to New York on a 7 day business trip. I was then subsequently left stranded in N/Y for almost 3 weeks following the events of 9/11. I even visited the Empire state building with a former colleague on the evening of the 10th September. I remember looking at the world trade centre and saying to my colleague, we must go up the WTC before we leave N/Y. Of course as we all know, the following morning both of the WTC towers were destroyed in the 9/11 attacks!

So when I'm feeling sorry for myself or having a bad PD day, i think back to September 2001 and say to myself, I am a lucky man. The 2,784 souls who died in that 9/11 attack were not so lucky.
Thanks so much blueeyes, passeggiata, rhino and rico (thanks too rico for excusing my negativity)for your tremendously uplifting posts.

As you rightly say rico,it's great to hear from folk who are many years down the line with this awful condition, and long may you continue.

Best wishes to all, and thanks again for lifting me out of the mire!
Hi all, I'm also an 11 yearer!! When I was dx I recall walking out of the hospital trying desperately not to cry, I got into my car and just burst into tears. I never needed my mother more than at this time...despite that she had been dead for a year. Strange how particular incidents in one's life stay in the memory, even down to the last detail.

Glenchass
I am just wondering something. My carer came today & mentioned that another of her service users is convinced that his pd became a problem when his daughter died. I was dx in March 2009 . MY mother had died in FEB. I had been caring for her for some 5 years. I am not suggesting that stress actually causes pd, but maybe it brings it to the fore?
Yes ive also had a lot of stress in tne past few years my eldest daughter has had three attempts at ivf 3rd attempt was successful, my sister died,and my youngest daughter had to be bought back from australia because we found out she has aan eating disorder, she lives at home and i find that v stressful at times i cant always cope with her and the PD.sure it must have some affects
Take care evry one
Chris
Going back many posts to answer Rico's question - no, my husband, (now 12 years in) hasn't had DBS. Levadopa, yes. After diagnosis he postponed starting medication as long as he could manage, and so he was transformed when he did start (on Sinemet, Entacapone and Mirapexin).
Then, gradually progressing symptoms; and gradually increasing dosages, which helped to some extent. Then 2-3 years back a junior doctor decided in her wisdom that since his condition was progressing only slowly he didn't need to be kept under review, and discharged him from his specialist clinic - so he wasn't seen except by his GP till early this year.
He was having real difficulty by then, needing help with a lot of things. He saw his Parkinson's specialist who increased the Sinemet and Entacapone quite considerably (a rough few days as the dosage changed) and took him off the Mirapexin (great, no more swollen ankles). He also had some good physio help and advice and improved remarkably with this combination. (So much that a waitress at a restaurant he often goes to asked him whether he didn't use to have Parkinson's disease! If only!)