There are some things I feel so strongly about, and I am thankful of having a stubborn nature that makes me dig in and not waiver. Not now, not tomorrow, not ever. One of them is loosing my grace in this difficult and wearing condition. To me grace means my self esteem, my pride, my ability to deal with things nicely, to be considerate, kind and not loose patience. I fight hard to retain all these things whilst this condition does it best to out run me. I won't loose, I am far too determined. It would be like a vat of molten treacle in front of the entrance to Tiffany's, a bit sticky but no chance of stopping me.
Kindest
C
72 Replies
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I agree!! I am nothing if not stubborn. It's the only thing that gets me through
I fight as hard as I can not to let this interloper get the better of me. Just when I think I might be winning, it pulls another trick out of the bag. And off we go again ..............
Yes I know …. we need to be smarter, more cunning, more flexible, more determined, more stubborn, play more drums, laugh more, bake huge cakes and every once in a while do something completely crazy….
Well done you, that is what you need to stop PD getting you down. I lost my spirit and fight at the start of this year & went rapidly - very rapidly downhill. However I sort of found a 'mentor' on this site JohnPepper, he has been very encouraging and he also is a very determined person. He has written a book 'How to Reverse Parkinsons' & he also has a website. He is very keen on walking as one of the way's to combat PD. I have sent away for his book & I'm eagerly awaiting it's arrival. What I have mentioned to John is that I would like for there to be an online 'A Parkinsons Disease Walking, Health & even Hobby Club' included on HealthUnlocked. Where we could look at different aspects & set ourseves Health & happiness targets - even very small targets. If you are interested, and you sound the sort of person who could be post back - your input would be appreciated. All best wishes Helen.
Hi Helen, Clubs are oh so difficult to keep going as we ebb and flow in and out of this condition. I find I cannot commit to anything as I am mindful of letting others down. However it is a great idea to keep posting on here ideas and suggestions. I am not sure I have come across John but it is good you have someone to lean on. Sorry if I seem utterly useless! I try not to be Kindest C
Thanks H H, I have just been looking at other posts regarding the difficulties and traumas that people are going through, and I admit it diid seem daunting & perhaps even really too much to contemplate the range is so wide. Anyway - it's a good site as it is! I appreciate your honesty Kindest Helen
You have a tremendous attitude or what they use to say in the RCAF you are flying at the righjt alltitue..I was downand deplressed and took Coconut oil and it has made a great difference have you tried it?????? nothing to lose djr2003ont@yahoo.ca
I am 'nuts' so I am told and love Bounty's but no never tried coconut oil. I have great weapons at my disposal, I use my brain to think, I plan, I negotiate, I compromise, I am resourceful, I find solutions, I dance, drum, write, draw, take photo's and work! Its a good life and I am around the 12 year mark!
Waht is bounty.....I am new to this web site and do not get all the abrevations or treatments you show still try Coconut oil and lete me know how you make out djr2003ont@yahoo.ca
I actually meant what I said sincerely Ryan12, I wasn't being sarcastic, apologies if it sounded that way. I DID think it would be fun. I wouldn't put down what is important to other people & is helping them. All best Helen.
Guess we are transmitting on two different frequencies, i recently discovered Coconut oil and it has had a wondedrful affect on me, I can sing again Talk again no depression so I wonder how did I manage without this medication my tremours are less and i feel alive again....thats what i say we are on two different levels I have found what i think is my cure and i would like for you to try it and see the results nothing to lose hope to hear from YOU tks DJR
Thanks Ryan. I'll do some internet shopping today & get some Coconut oil ordered - as you say 'It's well worth a try' There have been a lot of people saying the same & I am glad that it's had such a wonderful effect on you. I will keep you posted, when I've given it a go. All best Helen
Thank you for raising such an important issue. I have tremor dominant Parkinson's which many of you can understand makes life difficult at times, in such tasks of doing up shirt buttons, aligning up zips to connect the two sides together and many other tasks of an intricate nature. It is only too easy to do these small tasks and ask my wife to help me and sometimes I get frustrated when I fail to do these things within a reasonable timescale. As a result of your post, which has made me think, I shall persist longer in what I'm trying to do and ask less of her.
Another important point is that my wife sometimes jokes with people "don't ask him how he is, because he will tell you!" Everybody, even those without PD, has problems of their own and do not want to be burdened with our problems, do they?
Oh its a bugger eh, buttons, bows, boots, lipstick, etc etc. And boy does it test your fortitude. But, I won't bow down to being grumpy, moaning, any kind of woe is me. I won't sit around my house and watch day time TV, I kicked the TV out anyway. I am not going to turn into some bitter, angry frustrated boring 'ill' person. Nope. I refuse. I make an effort everyday to look as good as I can, meet people, do something positive, have some fun and be happy. You know what it damn well works! Have a good weekend
You really do sound an interesting inspirational person - and my next job is to shower, put some knock out clothes on, some makeup & do a drawing. Kindest Helen
So, I have an approach that works for me. The secret is to roll with it. If I cant fasten my top button... I leave it open. If brushing my teeth with my right hand fails I use my left hand. If I struggle to get my wallet out of my pocket (its because im hoping someone else will pay) the people behind will have to wait. My second secret is I use my energy on my bike. I can pedal much faster than my parkinsons. I choose the battle ground and I always win.
Hi you all have your ways of coping which are admirable the cycling/ cake baking/ drumming
Ii,loved walling and swimming
But now do tai chi,and singing and attend Parkinson's,meetings
Lo,I,Jill
We have all got to get on with it and not let this disease overtake us.
My Neuro says I am an odd chap. I am not really, I just don't go along with all these drugs and medications that complicate life. I have too much to do without side effects of nodding off, or fighting to say upright.
I have my dignity and pride and Bloody hell am I going to keep it.
Hi Colleen, it seems to be ages since I last noticed you on this forum. Perhaps I've been wandering around with mu yes only half open. Another problem I have encountered with deficient eyesight is that the nice people at the DVLA have decided I must not drive any more. Having been able to come and go at will for something like 37 years I am finding this hard to take. This is due to PD derived eye problems primarily double vision.
Anyway I wanted to comment on your post in which you declare a high degree of determination to maintain your stance on whatever problem or goal is your current focus.Very often the sort of stubborn determination of which you speak is essential in order to achieve stuff. Not regarding your struggle with PD but in general I can see a problem with being determinedly steadfast and that is, what happens if you are mistaken in some way?
I am reminded of a quote from Oliver Cromwell as used by Dr. J. Bronowski in his book "The Ascent of Man". The quote being "I beseech you, in the bowels of Christ , think it possible you may be mistaken". This quote was used when considering the Nazi extermination camps. It seems that many Nazi followers believed that they were doing a right thing and obviously they were not but determinedly proceeded as though they were. Perhaps there should always remain a small gap in that wall of determination to allow mistakes to make good their escape and so be exposed to further scrutiny?
Bit of a dramatic example, lady determined to make the best of life with an incurable neurological disease vs. murder of 6 million Jews. but it was just the first / only example that sprang to mind.
Ah Pete long time no speak. I am always around but not always thinking about PD or it's complexities. (Which appear lightweight in the shadow of your thinking.) I'm a simple creature with plenty of chinks. My few lines refer to the need I have to retain some part of me in this slow erosion. This is not about perfection nor is it preaching. It's about a little child who was born on a Monday. Kindest C
Hi Colleen. Call yourself a simple creature if you wish but I would like to argue with you in opposition to that view more strenuously than on any other subject that we may have verbally sparred with before.
Your self assessment as a simple creature may be dismissed first, simply by virtue of your gender. This naturally is from a male perspective. lol. It may also be dismissed as a device used to escape.
Anyway its just not true. Your posts on this forum and your determination to make the best of things plus your accompanying ideas and the way you express them also demonstrate the self terminological inexactitude ( term famously used by W. Churchill) of simple creature is unacceptable. So there!
Means of escape, naturally. I am anything but simple. But I find debating is so tiresome, and wish to expend any precious energy in more productive ways! Added to that your inexhaustible brain, which you fritter, is too well tuned, I know when to quit. Smiling C
Hi Pete, Just a suggestion, I had the most awful case of double vision recently & it was being caused by a medication I was taking - which I've stopped taking - & my double vision has gone - worth checking out.
Thanks Pheonxalight. I just wrote a fairly verbose post in reply to yours but lost it. I haven't the energy to re-write it. I did wonder though what med you had given up to get rid of your diplopia?
Hi Pete 1, I'm good at 'Verbosity' & I loose posts as well. I have been diagnosed as having Parkinsons 5 years ago. The medication that gave me really bad double vision was Pregabilina - I started it on 25/10/ 2013 at 1 x 75mg to rise to taking 2 x 75mg a day. I have a real problem with taking tablets - so I stuck on the 1 x 75mg dose a day. However last friday I went to my local GP still suffering badly from what my Homeopath believes is Sudo Gout in my foot, ankle & sometimes in my leg. I also suffer really bad burning pain in my left hand fingers - which is thought to be nerve pain. Even on this really small dose of 1 x 75mg Pregabalin per day I experienced double vision, especially while looking at the TV. My GP decided to increase my Pregabalin to 150mg x twice a day. To be fair I didn't tell her I was only taking the 1 x 75mg a day. So I decided that I would do the same with the 150mg dose, take it once a day. Took first 150mg dose Sat morning, went out to do shopping with my husband driving, sitting in the stationary car I had a sureal experience - looking out every person was double with about 6ft huge gaps between them & the double - it was like being in another universe, Then on the road looking at the moving traffic - all the double vision of cars - they were all merging into one another - I had to shut my eyes. The other quite wierd thing was - I didn't realize it then, but I do now - that I was as high as a kite!! And in a strange way I liked being high. And I was immediately addicted to them in spite of the vision problem & a few other addiction problems that turned up!!!. My daughter went mad & insisted I come off of them, which I'm doing with varying success. Anyway thats my take, that Pregabalin really messed up my vision. And when not taking them I don't have double vision. ALSO Pete on 03/12/13 there were quite a lot of posts about Pregabalin & also Gabbepentin have a look. It's worth investigating if its your medication thats causing you problems with driving. All best Helen.
Helen, thank you for your extensive answer. The drug I take that I was once suspicious of is the dopamine agonist, Pramipexole (Mirapex, Mirapexin or Sifrol). This does not seem to be the cause of my Diiplopia. I once gradually stopped taking this to see if thew Diplopia would stop. It didn't but I did find that without it I got fairly bad RLS. The only thing I wonder about is whether I should have stayed off the Pramipexole for much longer. But due to the RLS and also feeling unwell in a way that I cannot describe I started back on the drug on order to recover some of my normality.
Hi H H. I am so excited to come across this blog and hear someone else who is determined to beat Pd. We know we can'r cure it but we are not going to let it get the better of us.
I want to say Hi to Helen, Soup, Norton, Owdsod and Pete-1. I haven't seen you around lately. I have just come in from my bi-daily one-hour walk. The south-easter is blowing very strongly this morning and it made my walk 'Interesting' to say the least. However, I survived and am now sitting, cooling off and reading all the responses.
While I was walking, the thought that I might be wrong about Big Pharma, and neurologists, started going through my head.. Maybe they are doing their best to find a cure for Pd! But the more that I thought about it the more I am convinced that it would create havoc among the neurologists if all the Pd, Alzheimer's and dementia patients no longer needed their services! If I were a neurologist, and were very empathetic with my patient's problems, I would be equally disturbed about my own future if they no longer needed my services. I am only human and so are they!
Big Pharma are in it to make a buck, nothing more and nothing less. If they find cures for all the health problems they would not have a business.
So the fact that I cannot think of any cures for any conditions that have been found in my lifetime does not surprise me. I know there have been one or two vaccines like Salk, but they are not cures, they only help us to steer clear of certain health problems.
We have to realize that we each have to find our own way out of this mess, whatever that is. I have found mine and I believe there is a weekly TV program in the USA run by Dr Robert Rogers, which airs the stories of dozens of people who claim to have beaten their Pd. I have not been able to watch this program but the fact that there is a program must mean that there are lots of people out there who think that they have the answer to Pd.
All of us have different problems with Pd, so there might well be many ways of treating each form of Pd.
Thank you for remembering us. I like to read about your walking exercise. It's good to get out of my bungalow and into nature, because it lightens my mood. I think that nature is our natural home.
You point about the real aims of big pharma is off topic for this thread, but I just have to agree with you. Pharmaceutical companies are about making money, because they are businesses and must be successful to make money, but curing people will ultimately be counter to this, but if you can lock people into taking drugs for the rest of their lives will make a lot of money for the companies and shareholders. Of course making money is necessary for further research into other health conditions.
Hi Norton. I'm so pleased to hear from you again. You lift my spirits up when you tell me you are walking, to get the cobwebs out of your head. The weather must be pretty miserable right now for walking. But it is the best way to beat this problem. Good luck.
Hi Norton. I wondered if you sent me this website youtu.be/UjiBlsLBQNA or if you didn't whether you have looked at it? Warch it and tell me what you think.
No, I did not send it to you, but the lady in the video expresses my thoughts entirely. Seeing how we innocently get caught up in the pharmaceutical companies strategies is worrying. What's more the lady said they are provable! Recently, you had the term 'cynic' directed at you. This video shows you as a realist. Thank you for helping to open our eyes to the psychology we are being subjected to.
Hi Norton. It is always nice to talk to you, especially when you agree with me, which does not often happen. I don't hold it against Big Pharma, as long as we all understand that they are not there for any other reason than PROFIT. They are not, in my personal opinion, looking for a cure for Pd. Others are, but if they find that illusive cure, will it raech us? I doublt it. Big Pharma will buy it from its owner and it will disappear into cyberspace, never to be seen again. So we have to take things into our own hands and do what we know we can do, and hope for the best!
At indeed the great risk of a Patient onslaught I am going to touch ( and possibly light) on a point you raise. I am somewhat heartened by your open minded thinking about Pharma. This is what I know, and when I said know I mean first hand. I cannot abide assumption its dangerous and ill advised. I have worked for 2 large Pharmas for the past 5 years. In that time I have spoken to over 5000 people, I've been an innovator, a thinker, a creator and a watch dog. My interfaces are from CEO down. Who's offices I can stroll in, who I can call, text, e mail anytime. So I think I can comment to a level. All businesses are in business. And the ones we most need, we the patient, better had be profitable otherwise bang goes our research. Do they 'hide' cures?? A completely ridiculous notion. Modern day 'cures' are all dependant on drug control. Chances are a 'cure' means more people need more medicine. What annoys me is the dance that takes place to deal with compliance and legislation. Even my simplest comments are subject to 'approval' before publishing. The worst enemy here is not the control which is much needed but the time. Time ticks for us all and these processes are the worst offenders. My main point however is this …. never in my life have I come across a group of motivated men and women who on a daily basis fight our war with dedication, talent, and utterly selfless agenda's. I am proud to be associated, they make me feel safe. What I do is forget about it all, I am in safe hands. The solution to a better life will come, when its right. It may miss me, but I am doing OK. I have no doubt there will be disagreement, which is fine and the point of this site is freedom of speech. However, knowledge is not speculation or heresy, not in my book. Kindest, C
Hi H H. I am a bit confused. Surely a cure is something you take once and that is it. This business of having to continue to take it ad infinitum is not a cure but a treatment. Or am I wrong? I appreciate you opening this up for discussion.
Hi H H. When you say zero impact, what do you mean? Sorry to be so pedantic but if we can talk this through we will all gain from it.
If I get a chronic illness and somebody gives me a cure and the illness goes away, is that not a cure? If I get a chronic illness and somebody gives me a cure and my illness stays at that level, but I have to keep taking the cure in order to stay at that level, would I be correct in thinking that is a treatment?
oh blimey! as a Patient I don't really mind what you call it. However people call the treatment for AIDs a 'cure' … and in my mind if I am symptom and side effect free thats cure enough ... go ahead be pedantic, its no bad thing!
Thanks H H. I can see you work in the industry, but that is no crime. I am an idealist, I will settle for nothing less than what I call a cure. It may never happen in my lifetime, but who knows?
Ah! Here's a word I understand. If the number of my symptoms increases or the severity of the symptoms I already have becomes worse, I feel sure that my condition is progressing forwards. However, if the number of my symptoms becomes less or the severity of my symptoms is reduced then I feel sure that my symptoms are reversing. If I still have some symptoms, I am sure that I still have the chronic condition. A cure to me would entail getting rid of all the symptoms. How's that?
Feel sure was referring to the meaning of 'reversal', but I am absolutely sure that my symptoms are fewer and the severity is very much less. That I am very sure is reversal of symptoms.
Bugger. Done it again. typed a big post in support of your defence of those involved in the drugs industry and I've gone and lost it. Anyway excellent post. I don't go along with the conspiracy theorists. Cock-up maybe but not conspiracy. I do think though that one needs to allow for the possibility of individuals desperate to enhance their careers who allow some bias or even false results in the odd test result or 2
If I remember correctly you have posted that post before and why not it is a good'n'.
And when someone makes an unfavourable assertion without evidence then that is easy to do and is very attractive to those keen on band wagons.
Also any treatment taken on a regular basis that renders PD symptoms imperceptible is tantamount to a cure in my book.
Its late, I'm off to bed TTFN
Hi John Pepper
I have been saying this for years regarding the drug companies finding cures for many complaints
just imagine tomorrow if they came up with a cure for many of the known Chronic debilitating diseases like PD or Cancer etc.
It might save the government money but what about the collapse in market shares of drug companies. Pop one pill and you are cured. Utter Chaos I imagine.
Hospital wards close, Consultants no longer having patients to see.
It will never happen, because there is too much money tied up in all sorts for such a thing to come to fruition.
If it should ever happen there will be a very big brush to sweep it under the corporate carpet.
Hi owdsod. Thanks for the support. Our knowledge of where we really stand with doctors and Big Pharma can only strengthen our resolve to beat them and this condition. We are on our own and we have to get used to it. I have been off all medication for ten years and I am living a very good life now. I have to continue my walking, three times a week for one hour. I love it, whether the weather is wet or fine, I feel wonderful! It is now five o'clock in the morning. I cannot sleep, which is a minor problem in my life. I walked yesterday in a howling wind, but it only made me more determined. Today I am going to spend the whole day looking for the evidence that GDNF reverses Parkinson's disease. Then others will be encouraged to take up walking and be enabled to get away from medication.
I did miles of walking daily in the wilds before this caught me up, now it is usually when I feel like it. I do think it is a case of pushing ones self even though i am in no way like an Olympic athlete.
Ah! You are still young enough to be my biological son. So don't start thinking of yourself as 'old' It tends to cloud your enthusiasm for adventure and bright lights.
I look forward to talking to you. I was born in London, a few years before WWII.
I certainly don't think myself old, but as for Enthusiasm (I have lots of that ) Adventure (not so much nowadays) and as for bright lights (It all depends if the electric is working)
Hi owdsod. I love to see some humour on these websites. There is not a lot of it around on this one, because we take Pd very seriously. I do take it extremely seriously, but there is always a chance to have a little levity, especially clever comments.
I am pleased that you don't regard yourself too old for adventure and any bright lights that don't emanate from fires. Sometimes doing up my laces is quite an adventure. Getting down there is the journey, finding a hole in my socks is the thrilling part. What do I do about it? Taking them off is even worse than putting them on. But getting it all behind me is always an achievement. Perhaps adventure is not about achievement but not knowing whether I can get them on is an adventure.
When I have finished typing these blogs I go through them and remove all the mistyping, which normally happens on each word. I not only mistype, I invariably leave out a letter or two. That can be very embarrassing, especially when I leave out the 'f' in shift or the 'l' in flux. Putting in extra letters happens more often. When I get 'klink' instead of kink it does not offend anybody but it does make the understanding difficult. The most common mistake is hitting the key next to the one I intended and get such things as 'fart' instead of dart. It is a minefield!
Hi Pete-1. Yes. That photo was taken ten years ago, when I published my first book. I should get the latest one, but never get around to it.
Kind regards
John
Having read all of the above, I am sure I could reply similarly especially if I had my thesaurus opened but I am no Joan of Arc and certainly no Martyr to the cause.
Today I am feeling lousy but tomorrow may be better and if not, perhaps the day after. If I need to wallow in 'self pity' so what!!!!! Those who are closest to me understand and if the shirt has a few creases, meal a little overcooked, bed pulled up over the wrinkles....its OK. No more striving for perfection and if you could see how my linen now gets folded.....its clean at least.
Sure, I do a little bike pedalling most days .......its a darn good excuse to listen to my favourite music
• in reply to
Wallow away. I talk only about what I feel and do and in no way suggest that it is the best way to live with PD. hope you have a good weekend
Hi Bridieelena. Atta girl! Don't let anything get you down.
John
• in reply to
Thats the way to live we have to take one day at a time and like you say who cares if there is a crease in a shirt or a meal over cooked None of us will ever find perfection in life so there really is no need to try.
Hi Norton & WHOA!! As the person who responded to JohnPepper's invitation to call him a cynic (re his attitude to the pharma industry) I stand by that ' tongue in cheek' remark. I still maintain that if the combined brain power going into calculating the potential profits of pharma failing to deliver 'cures' could be put to more productive/ positive uses the world might be a better place....& no I don't have any particular ideas in mind. As I pointed out earlier the rate at which new conditions are being discovered & the potential research income thus generated should be sufficient to keep pharma in business for a while yet.
I wasn't aware that HendersonHaywood had connections with pharma but reading her input restored some balance to the discussion. I don't consider myself expert in this area but having worked with children suffering from just every known medical condition (& some identified later) & supported their families through treatments & trials I have not once been involved with a professional or organisation from any discipline who I considered to be just in it for the money.
I do know one way we can all actively further the search for cure (if we believe there is one) & that is simply to volunteer for trials. I was dxd 9yrs ago via a nerve trial, am still taking part in a medical trial, failed selection for a Cogane trial & about to leave the Transeuro stem cell transplant programme due to a recent heart attack. As soon as I'm declared fit I shall be looking for non surgical trial such as Exenatide (I hear the GDNF trial at Frenchay is fully subscribed) & if I don't get accepted I'll keep on looking.
Did you actually view the video link, by Olsen who had worked in the pharmaceutical industry for 15 years giving her take on the way it operates? If you did view it and disbelieve what was being said, then we will just have to agree to differ.
I appear to be treading on a few toes. I have no intention of trying to make Big Pharma ashamed of what they do. They are in business to make money! There is nothing wrong with that. Doctors are also in business to make money and there is nothing wrong with that either. When patients are tempted to put their trust entirely into their medication, thinking that it will keep them going until a 'cure' s found, and believing that a cure will be found, then I feel that someone should point out that that may never happen!
I have been very fortunate in that I have been able to reverse my symptoms and no longer need to take any Pd medication for the past ten years. That was not easy to do, but there is no secret involved in how I did it. Exercise, plus the right medication and getting rid of harmful stress, all helped to bring this about. Others need to know that there is another way, other than the medication route. I have no business interests in this. I am not trying to make money out of it. It is just very difficult to get people to realize that there is a way out of all this!
I know that the greater majority of Pd patients will not be motivated to follow my lead but even if twenty percent of them do, then I will have helped a hell of a lot of people. I need to talk to newly diagnosed patients, before they start taking medication and becoming dependent upon it.
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Anyone else not helped by dopamine agonists?
