Hi,
Never thought i would be on this site, not sure what i am thinking yet but at 44 yo its a lot to take in. One bit of help I need is advice on when and how to tell family. My children all live overseas and not sure how or when to let them know. Its early times as I only found out last week adn have just started meds.
now is the time
start with the oldest and work you way down
they can help
good luck
start a exercise program it will help
thanks, the journey starts now!
Do it as soon as you feel that YOU have a proper perspective on your condition and its implications for the years ahead.
Depending on how you manage your diet and lifestyle moving forward, you can either expedite the progression of symptoms or you can slow the process to a virtual crawl for many years of self-sufficiency yet to come.
This, coupled with the fact that ever-evolving research in numerous promising areas is finally gaining serious momentum i.e., focused ultrasound, genetically modified immune cells, alpha-synuclein-busting M13, (see links below) etc., etc., should provide ample room for optimism when finally breaking the news.
Focused/guided ultrasound: your4state.com/news/news/po... [Univ. of Maryland, 9-28-15]
Gen-Mod Macrophages: wncn.com/2015/09/10/unc-sci...
A-syn-busting M13: wsj.com/articles/a-new-atta...
vaccines to eliminate alphasynuclein too
You are one of
The reason s i check this site every day. Thanks so much.
Hi Dean. Just remember that NO PD MEDICATION HAS ANY POSITIVE EFFECT ON THE PROGRESSION OF PD! That means that you take the risk of suffering from the side effects of these medications without them doing anything to slow down the progression. What these medications aim to do is temporarily hide one or two of the symptoms.
If you stop taking the medication, while you can, and start doing FAST WALKING you stand a good chance of reversing your Pd. click on reverseparkinsons.net and see what is said about many of the aspects of Pd. If you have been on the medication for quite a while, you may have to come off it slowly. Speak to your neurologist, although he may not like the idea of you stopping medication, but that is YOUR CHOICE.
Good luck!
John
I would let them know asap . Cause its a weight of your shoulders
I told my family and friends and work colleagues as soon as I was diagnosed. It was important to me that everyone knew so that I wouldn't have to try and hide the symptoms or feel I was living a lie. They were shocked initially but they were so supportive. Adaptations were done at work for me which helps hugely and my children still treat me exactly the same as they always have.
That was four and a half years ago now and although my symptoms have progressed in that time I can still work and do everything I did before.
Everyone is different about how they tell people but I found it so much easier to 'rip off the plaster' rather than peel it off bit by painful bit.
Good luck
Caroline x
The first thing is to accept that your diagnosis is not the end of the world. There is much you can do to slow down any progress in symptoms. Firstly, an exercise programme, involving a mix of activities that you can enjoy is essential. These can involve walking, gym, cycling, yoga, Pilates, running, tai chi, etc. Make sure you do one of your choice every day. It really does help.
Next, log into the web and sign up for The Cure Parkinson's Trust, Parkinson's UK, The Michael J Fox Foundation. Knowledge is very important and apart from learning about the research projects being carried out in a number of countries, advice about coping with the condition is very supportive.
There are a number of clinical research projects due to start in the foreseeable future and the researchers are crying out for People with Parkinson's (PWP) to volunteer as participants. It won't be that long before therapies are developed to slow, stop and cure PD, but researchers need PWP to take part in clinical trials.
Telling your family about your diagnosis will be so much easier, when you can tell them that this is not the end of the world as you know it, that medication, regular strenuous exercise, knowledge of the PD research community and participation in a trial will all help you, as much as possible, to maintain your life as you have known it before PD.
I don't have PD, but my wife does, having been diagnosed almost four years ago. She has attacked this disease in all the ways I have described above and unless you knew a lot about PD, you'd never know she had the condition. Her attitude is amazing and has helped enormously . She was a vigorous and young 61 year old when we received her diagnosis, which was devastating for a short while. She was determined to find out the best ways of dealing with this and in the process has made new acquaintances, both face to face and on-line, in the process. We told our children about the diagnosis immediately, but only a few weeks ago did we tell our 4 oldest grandchildren, ranging in age between 12 and 8. They had not a clue that their granny had anything wrong with her. Explaining the disease in simple terms, emphasising the positive things you can do to ameliorate the effects of PD left them accepting and not at all anxious.
I hope this helps.
Hello. I am sorry to hear about your diagnosis but know that it will be less frightening as you learn more about it. My daughter sent me a book that is very good. It was written by a man with PD and shows great pictures of exercises we can do. It is called Delay the Disease by David Zid. I have found it helpful. Read all of the books on PD that you can find and that will help you to know what to expect. Good luck. 
Peaches
No need to tell them. Your diagnosis says nothing about your life expectancy, when you see them is time enough. Exercise, eat well, stay unstressed and you will outlive your age mates.
I'm am not sure what is meant by John when he says that meds. just "hide" the disease and I've not come across anyone who was under the delusion that meds. do anything but alleviate the symptoms of a progressive (a misnomer if ever there was one) disease. The right exercise- and John's' fast walking is certainly one such - help with the symptoms and even reduce the need for meds. which are not always even PD meds but ones for the knock on effects of the original deficit and and loss of function none of which are inevitable. You still get patronising neuros who insist on interpreting any belief in exercise as a naïve belief that a cure for the underlying disease is claimed. and rejecting the idea of plasticity of the brain which has been put into practice for years by, for example, Conductive Education.
I realise there is a lot more to John P.'s approach and hope I do not appear to either putting words into his mouth or contradicting his pioneering work. The written word is a bit of a minefield on these forums. I would have liked to have heard John P. in person
Hi Paddyfields, I don't take L-Dopa (yet) I'm not saying never, but I am saying not now! My sister has had PD for 15 years, I've had it 6. I'm not taking meds because my sisters PD is very advanced, her shakes have turned to dyskinesia, and I am convinced it's over medication, and there is nothing she can do about it now... without her meds she is cannot function at all. We are all different, perhaps I got a small dose(?) I have a slight shake, it has worsened but not much. I'll consider taking L-Dopa when I spill my wine to often.
I have met John on numerous occasions, I run a Support Group, and have 25 +- PWP's we are all on different meds, and are all affected differently, some worse than others. I am the only one not taking L-Dopa and am the least affected. John has visited us a couple of times, and I believe he 'reversed' his symptoms by doing his regimen, perhaps it wont work for everyone, but it certainly worked for him. One can't help being impressed!
So far John is the only one who has had long term reversal of symptoms.
You are fortunate with your PD, long may it last. I have a friend year seven who is only now starting meds.
Hi Blue Jeans, Thanks for the info. I started meds. straight away because I had what for me anyway was a bad tremor, irst arm and then it seemed the whole of my right side all within six months of the car crash so I just leapt at meds. but I was asked whether I wanted to start or not. Sinemet was the drug of choice at my age of 69. If it hadn't been for the strength of the shakes I would most probably have resisted meds.as long as possible and I have certainly resisted hiking them up in the last six years as other problems were laid at Mr. P's door but I had the confidence that they were not, i.e. tiredness - B12 deficiency and fluey aches and pains - polymyalgia. My neuro prefers, not to go above 5 mg ( at the moment anyway) and after some resistance on my part I am on neuro patches because I discovered myself anyway that I cannot take 5 mg - certainly not two tabs at a time - without the wriggles starting up - nothing too bad but none is the objective.. With the PD nurse, I am almost afraid to mention minor symptoms in case with expanding knowledge she offers a med e.g. I mentioned that my right eye does not open very readily after sleep and straightway botox as mentioned!! One stuk eylid for a few mins. is hardly life-threatening. You have to keep your wits about you. I Hope this reads OK as my keyboard has started overtyping
instead of inserting so I can't corretc
Dear Blue-jeans.
I have been diagnosed with PD 7 years ego and also don't take any medication except Azilect as yet.
Doing fast walking and other things in the gym religiously, every day and that's what keeps me going and sane and positive most of the time.
Lately my symptoms worsened: tremor has become bilateral and more pronounced, balance visibly worsened.
I am so reluctant to start "getting doped" but now the symptoms really start to interfere with my social life and performing most basic daily activities.
I am on the crossroad right now: shall I start the medication or linger a bit longer. Has the time come or I still have a hope of PD reversal?
Yes apart from John nobody done it. Still..
why not use the meds they are only one tool of many to use
i use sinemate and extreme exercise to control my pd
best of two worlds
meds have their place
i am 61 will be 62 in January Pd for 9 years 25 if you count symptoms i had off and on last 25 years
when i am on you can not tell i have PD have fooled several docs
look at some of my post
to see what i can do
in my profile picture i am holding a 300 lb barbell
i can do more but all the weight i have at home
so don't limit your choices
it took me 9 years to get it right
Thanks everyone, good to know there is a big community of helpers out there. My wife and i have decided to give it a month to fly to Australia and tell my kids. This is just after my first follow up with my neuroligist. Will be telling work on Monday. Hope that goes ok.
Thanks again everyone.
I know a lot of other people have responded. I agree with the "tell others when you are comfortable telling them." My husband was diagnosed in 2009. His memory is that we told the kids right away; mine is that we waited a short time...after some of the initial shock wore off. Bottom line is, you do what is comfortable for you.
Dean
My children were all the other side of the world. I waited 6 months until I could visit and told them in person, a good move, they need to see you are ok.
Don't feel pressured, you have a lifetime of time to tell the world.
I was diagnosed a year ago and very few people know. My husband, some close friends, a couple of people at work. My kids -23 and 16 - don't know, nor does my mum. I will tell the children when I think the time is right, my mother, never, if I don't have to. They'd all worry and why make the burdens of others heavier? I think we are all different. I certainly think the advice on waiting until you have a little perspective on the condition is good. My experience is that the people I've told tend to take their cue from me - my view at the moment is that it's a pain in the backside but not the end of the world. There are many worse things. I explain my dragging of my leg and my weak arm on a trapped nerve. I've always had a dodgy back. I certainly don't feel I'm living a lie - I'm a relatively private person and I have the right to keep things private if I wish. I'm sure as time goes on, I will tell more people.
Oh I so relate, it's such a difficult time. (since you asked) My advice for telling your kids is to fake it, pretend that you're not shattered and worried, tell them the truth, that you're not dying, it's not the end of the world, and that you've got plenty to look forward to still
Get your mind around this curse, it's yours, own it and control it! Tell your children, also tell them there is a very good chance it's not genetic my sister and I both have it, neither of our parents did. We're part of three studies, South Africa, 2 universities and one in London are looking at the genetics, it is extremely rare for siblings for family members to share this malady.
My advice - I'm no doctor but if your symptoms are not very bad yet, speak to your neurologist about taking a non dopaminic (sp?) med, there are a few on the market. I'm not sure if I can mention the names here, but the active ingredient is selegiline, but ask your doctor first, I'd hate to give you bad advice.
I've had PD for 6 years and don't take L-Dopa, I never have, I'm very happy with the slow progress of shakes. Exercise is important, walk and do Bio Kinetics.
My sister has had PD for 15 years, she took L-Dopa from the start, her PD is very advanced and her shakes have turned to dyskinesia, due to overmedication.
Someone MUST be working on a cure! Keep Positive!
Thanks for all the info, we called our kids in Australia today and told my parents. Feels good to get it out in the open, sent them some info from the Parkinsons NZ website to read which they have found helpful.
Thanks again.
Been off KETO diet for the holiday and I feel...
Question for all that have been here for Awhile
Just a little expression of gratitude...
New here just joined in
