Hi Curem, I'm also a newbie on this site but chatted for a year on another site. Your concern is echoed by most of us with "Parkie Flu" So know that you have lots of love and support here

VLHPerry brought out an important consideration...form a team. When DX 3 years ago, I saw a neuro who wanted me on meds immediately. So, being a health teacher, I saw a MD specialist for a second opinion, naturepathic Doctor specializing in neuro disorders, and a physical therapist to establish baseline data. That was my team!

So now, with input from all, I'm taking neuro-protective supplements, an MAO-B inhibitor, mucuna, exercising and reducing stress. Seems so be working fine so far FOR ME.

But each of us is unique so you might think about forming your "team" if you are financially able. We wish you all the best on this journey. Don

Hi Curem,
I'm afraid that one of PD's persistent habits is to remind us constantly that it is there

Having said that sinemet still represents the so called 'gold standard' of treatment, and though for some there are big issues with it, for the majority of us it does represent a better quality of life, even with the difficult bits.

The statement from Dr Gupta is correct in it's essence, but for someone with no experience of PD treatments it could actually look quite scary. So you need to look at the whole statement, and the words like 'over time'. For the young onset person in their early 30's this means something completely different to someone who has late life onset, potentially 40 or 50 years, which is why finding a cure is so urgent, and even something that halts progression until a cure is found would be an improvement. Careful and well considered use of sinemet, for most, is not as problematic as it was in the past. Both doctors and patients have got better at understanding this, and so finding a good neuro who will collaborate with you is the ideal.

Symptoms can and do emerge as medications wear off and on, and are bothersome, but do not represent a progression of the disease, which is very slow. Finding your own personal balance is the big challenge, and takes time and patience.

But for now we have the drugs that are available, and there are emerging and valuable ideas on non-drug treatment of PD all the time, the best of which are exercise, and minimizing stress, which in themselves do not sound spectacular, but which actually reap many benefits. Cycling, Tai Chi, yoga, dance, aquasize and walking are all mentioned a lot, and some have scientific backup. Keeping on moving is essential and anything that helps that is good.........

Something I would also advise, especially as your PD is on your mind all the time is to find something you love to do, something you wished you had done earlier in life, or something you have an interest in but didn't have the time to pursue, and go for it! There are anecdotal accounts by many PwP that they can go many hours with no PD symptoms if absorbed in an activity they truly enjoy..........

If you look through posts on the forums you will also find that there is a crying need for patients like yourself who have not yet started on medication, for various studies, some of these do not entail taking medication, some do.

The value of participating in these studies is huge, and if this is something you feel you might like to do just ask, there are people here who know about how to volunteer for such studies, and where they are taking place. And please, if you feel this is not for you, do not worry about that either!!

As time goes on you may also consider advocacy - there are many thousands of PwP out there, many do not have or do not use computers, and so have less access to current information. There is something very special about doing things for other people, it takes you out of your own PD and can be a very real blessing.....

The main thing is that there is life after PD!

take care
Lindy

Vicky, keeping a journal is an excellent suggestion. Thanks so much for your guidance.
John

Hi, Curem.

I'm 46, and was diagnosed last year, in February. Shortly after my diagnosis, I began to notice new symptoms, and was convinced I was progressing rapidly. At that time, I had already begun a Sinemet regimen, but had not yet addressed the psychological/psychiatric components of PD (depression and anxiety caused by PD itself, or caused by the stress of a PD diagnosis). My MDS explained PD symptoms and anxiety are deeply, inexorably interwoven – that heightened levels of anxiety will exacerbate existing PD symptoms, including symptoms which might have gone unnoticed pre-diagnosis.

His words: “...heightened anxiety in dealing with this diagnosis is responsible for bringing out symptoms that are new for you to experience. The physiologic response to anxiety will 'drive' some manifestations of Parkinson's Disease that would be less noticeable if anxiety were less severe. This does not mean the condition itself is worse. Think of getting 'the shakes' when attempting public speaking or other anxiety provoking activity - it is a physiologic response to the anxiety.”

So, for me, psych meds (daily doses of Remeron and Ativan) have become important parts of my overall PD treatment – just as important as my PD meds, regular exercise, a good diet, and getting proper rest. When I miss doses of my psych meds, or if I fall down in other areas of my overall treatment, I pay a price in terms of exacerbated PD symptoms.

I know I haven't directly answered your question (PD meds or no), but I wanted to address the anxiety issue – mainly because I identify with it all too well. Getting some control over runaway anxiety has helped me better manage my PD symptoms, and it could help you as well.

I hope this helps.

On January 22, there is a great looking conference in Sarasota Florida. Some of the top researchers will be there including Dr. Langston from CA, the man who discovered a way to research pd when some bad heroine gave some people instant PD.

Also, Dr. Ole Isacson, the sharp looking researcher from harvard that we used to swoon over until he married a beautiful young lady. He is a stem cell researcher and implanted pig cells into human brains. One of them, Jim Finn was at a clinical research learning institute a few years ago. He is dyskinetic but alive and walking after [not sure maybe 15 years?].

i live in east central florida and think i'm going to get my family to this one, it's time my husband gets his eyes opened to what i've been talking about all these years. my daughters have been to conferences and one knows what it's all about. i've been separated for 6 years and reunited for more than 2 years so my husband hasn't been involved enough, altho he has met many of my friends.

anyway, hope to see you there! and any others that may attend! it's one to travel to if you live in FLorida and of course from beyond. It is short tho. only half of a Saturday.

http://www.smh.com/release.aspx?r=132

Paula..I am a member of Jim's support group..He is not doing good, and hasnt been to a meeting in quite a while..He took a nasty fall down the stairs a couple of years ago, and he has not been back to the group since

He did however , as you say, enjoy some years of quality life, as a result of the transplant

Steve,

I'm very sorry to hear that. It's been a couple of years almost since I saw him. Falls are the scariest part. It leads to so many others things like rib injury, which in turn make it impossible to cough, which allows the lungs to build up, pneumonia and so on.

and when you tell a pwp like Jim, hope you get better soon or speedy recovery, it is a nice thing to do , but sounds a little hollow. Get better for what? Thanks for letting us know.

You're Welcome Paula..I forgot to mention, that his fall landed him in Newport Hospital for a week or so..Unfortunately, Jim's pd has returned to an advanced stage

Our group has dwindled down to about 8 people, and we are going to make an effort to recruit more members, as well as go through the old group list and try to find out the status of the people who have vanished from the radar screen, and hopefully see if we can get some of them, if possible, to come back to the meeting..I hope Jim is one of them, but he has not been feeling well enough to participate

Hi Mantaray, How refreshing to hear of a neuro who in addition to his qualifications possesses common-sense and a real insight to his patients. I mentioned to my neuro that although I was fine really since starting medication 18 months ago, I had not got back my confidence to go on organised trips with strangers as I used to. He started a long ramble about the changes in personality that can occur with PD and I said well ac tually its because I know I've got PD. He looked quite startled at this as if it had never occurred to him. I have been recommended to take Rasageline (MAO inhibitor) with my low dose sinemet (I am 71) and your post has encouraged to take it if my symptoms go back to more than an occasional shaky arm. Plenty of exercise -rambling, yoga, zumba dancexercise has helped to reverse a problem I had with my hips (together with three courses of steroid) Like you I was determined to optimise what I could control to counterract the insidious effects of the PD . In fact today I managed to do a manoeuvre in Yoga which I have never been able to do before - the bow which is face down and catch your feet with your hands.

Hi, Paddy.

Yes, I'm extremely lucky to be under the care of my particular MDS. He's head of his department, and has had a 20-year association with NIH.

Every other day for months, I hit the man with a barrage of questions and concerns - in person, over the phone, over e-mail - while I struggled to come to grips with my diagnosis. At all times, he was thoughtful, considerate, and completely a professional, answering all of my questions calmly and in great detail. Like I said, I feel *very* lucky.

You sound like an incredibly active person, and I think that's fantastic. That you can perform the yoga pose you described... well, I'm jealous. If I try from a standing position to touch my toes, I wind up looking like nothing more than a lower-case "r" from the side. I'm kind of a computer nerd, and I'm not accustomed to regular exercise, but I'm forcing myself to do something every day - and I can tell it's having an impact. Not that I do so much - I basically walk 2.5 miles to work each day, do some light weight-lifting at night, and I go on strenuous weekend hikes with my wife when the weather is good. I'm hoping to expand my exercise routine as I hopefully build more stamina over time. Oh, and I'm taking part soon in a local runner's marathon which has a side event for people who want to walk (like me).

I'm a firm believer in the "brain plasticity" thing. Early on, about 2 years before I was diagnosed, I noticed my left hand would tremble when I'd use it to take a drink of wine, coffee, or whatever. I believe I was experiencing cogwheel rigidity, but didn't know it. Funny thing, I forced myself to use my "bad hand" as often as possible, to try to "re-train" my brain, and I could swear my symptoms were improving slowly, gradually.

Anyway, I've rambled on way too long. Best of luck to you, and I do hope you'll regain enough confidence to go on those trips you described. They sound like something you really enjoy.