Diagnosed with Parkinsons some 4 years ago, just starting walking difficulties,
My wife of 47 years leaves me. The pain is only 3 weeks old and at 73 I cry myself to sleep each day. Parky is bad enough but the double whammy is unbearable.
DoubleWhammy: Diagnosed with Parkinsons... - Cure Parkinson's
DoubleWhammy
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Parkylosses
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We here at HU - PM are understanding group
This losing process is the essence of this disease. It is at times very painful . I find that allowing myself to go to the depths of depression lets me rise again to a level state of acceptance. I hope you find the strength and goodness within you to recover... Losing without lasting suffering and learning to love yourself regardless of others..., it's a process that works for me.
Reach out the Lord for His love and support. He has a plan for all of us. With Him at your side, you have nothing to fear
Hi Parkylosses. My sympathies are with you, all the way. I have often heard of men leaving their wives, after they were diagnosed with Pd, but have only heard of one other man in the same position as you.
As you say, having Pd is one hell of a thing to cope with, but on your own is another altogether. I was married for 51 years before my late wife suddenly died. I was bereft, I did not know what to do with myself. Fortunately, after 15 months, in August 2012, I decided to do something about it. I wrote to a friend of my late wife, whose husband had also had Pd but died six years before me writing to her. I asked her if she would like to get to know me better. We did know each other, but as acquaintances only. She wrote back to me, but said she would like to get to know me better, but only as a friend. As we live a thousand miles apart, and I was in Cape Town, where she lives, I quickly met up with her and to cut a long story short, we took an immediate liking to each other and we moved in together within a few weeks. We finally got married on 28th June and moved into a new retirement village on 24th April this year. We have been gloriously happy together and are about to go on a honeymoon cruise from England to the Baltic Sea. Life has been wonderful for us and we have a great deal to look forward to.
I was diagnosed with Pd in 1992, but have had Pd symptoms since 1963. In 2002, I was able to stop taking my Pd medication and today, you would never know that I still have Pd. If you would like to read my story then go to my website - reverseparkinsons.net - and see how you could also possibly reverse your Pd.
Good luck
John Pepper
John Pepper, everyone knows there is no cure, as yet, for PD and the claim of reversing PD is totally erroneous. There are things that you can do to ease the symptoms and DBS, an operation has apparently got some brilliant results, but still no cure. The fact that you are advertising and attempting to extract money from Parkylosses who is suffering the double trauma of marital loss and PD is unforgivable. Your claim and advert is obviously a sham And if I were you I'd remove your comment or I should notify the admins.
Hello
It is not my intention to aggravate you or anybody else who believes the same as you regarding John Peppers motives in replying to Parkylosses and mentioning his 'Reverse Parkinson's' website at the same time. I have read his reply which comes across to me as a genuine attempt to encourage a fellow member, who is in the depths of despair at this time, by sharing his own life experience when he too lost his wife, albeit under different circumstances. His reply says to me 'it may seem that there is no future for you, but I can tell you that there is from my own experience'
Other posts in this thread bear the same message and I hope that Parkylosses can take comfort from all of them and come through this traumatic time happier and stronger, just as they have themselves.
Now for John Pepper mentioning his 'Reverse Parkinson's' website in the same reply. I should perhaps declare that I have bought his book which can purchased from this website, but there is so much more written there that is free, not to mention his 'free' newsletter. It appears to me that anyone visiting there can gain a lot without spending a penny (I'm from the UK).
As for the word 'cure', I can not recall John Pepper ever claiming that he is promoting a 'cure', reversal of some symptoms, yes, but not a cure. In fact, it was only recently that he mentioned that he still has some symptoms, but was able to drop his medication after 10 yrs, mainly through walking exercise which he still does to this day. Incidentally, there are many others who claim along similar lines, but use words such as 'reduce', 'recover' and the like.
Regards
Norton1
Like Lizzie7, I have a hard time seeing any value in first declaring how rare it is that a woman leaves a man, then relating a rambling tale of his own successful conquest in the wake of his wife's passing (completely different situation than this poor fellow's), then tooting his "Reversing Parkinson's" website (while previously admitting that he himself still has "most of the symptoms"). Maybe he's trying to help by providing the final nail(?).
I know there is cure. Stem cells. China did it and got results but costly if you are wealthy it's worthy From $15-$25k with 20 days of treatment China, I have some documents if anyone needs it, you are welcome to contact me.
skype: bluehaeven
Nuggets
got scientific evidence of this??? cause I'm not seeing anything on it.
Caveat Emptor.
China used stem cells long-time ago, at the beginning to treat the leukemia, if i choose this direction I should request all proof before heading to China.
nuggets
I had a close friend who in his fourth year after PD diagnosis raised money through family and friends, and went to China for stem cell therapy. After returning home he really went downhill and passed away within two years.
If there was any truth to stem cell therapy benefits it would be all over the news, publications in journals - not just on web sites in Germany, India, China, etc with testimonials from who knows.
I think John is just so happy with his decreased symptoms from his walking program that he is anxious for others to share in the same great results he has experienced. If I was walking down a trail with a friend and saw a rattlesnake, I not only would avoid it and consider myself lucky not to get bitten, but would warn my friend not to get near it and would explain how to tell it's a rattler. And maybe recommend the book I had on poisonous snakes. I've gotten a lot of useful info from John's blog and didn't spend a penny.
Lizzie7, I have had my conflicts with John Pepper and his over-enthusiasm for how he manages his PD, his website, book, etc. But this time he, at least, tried to help--in his own way.
Maybe we can all learn to focus less on ourselves and more on what the person who posted is going through. Ask for more info. and draw the person out. In this case Parkylosses seems lost and grieving heavily. We can 'be there' for others in this forum by simply listening, active listening.
Thank you for your hope and knowledge.
To john pepper
Hi Lizzie. What is erroneous about getting better. I have never claimed to be cured, but I don't need any medication any more and I can get around without falling. Have you read my story? Why not read it and then talk to me. It is very exciting! I am not selling anything for you to use, but I keep on telling my story, which is very real. Very soon, I will be able to publish the results of a scientific study made of my case. Until then, I can only do my best to tell others about what is possible.
Good luck
John
There is nothing erroneous about getting better John, in fact would that were true, I'd salute you. Talking of reversing PD I'm afraid is the same as talking of a cure as you know that PD is a progressive disease and PD patients do get worse, albeit at various lengths of time. Perhaps you have managed to alleviate some symptoms somewhat but the claim of reversal/cure is erroneous. It's nice for you to get your friends on here to 'back you up' but they, I'm afraid, will not change my mind about your claims.
I agree... it seems JohnPepper is determined not to let accuracy affect his urge to bloviate (most of us know that delaying onset or reducing symptoms doesn't qualify as "Reversing Parkinson's").
Hi Lizzie. I'm afraid that I cannot change what is! What is, is that My condition has improved so much that I have no longer needed medication since 2002. You may be inclined to think that I must have been misdiagnosed. Don't think we have not all considered this. The unmistakable truth is that there is no doubt, when looking at all the symptoms, that I did and still do have Pd. If I stop exercising for three months, it becomes obvious that the Pd gets worse. So why does exercise cause the Pd to stay on hold? It stays on hold because I produce enough GDNF to keep the brain supplying enough dopamine to overcome the Pd symptoms. Less exercise means less dopamine and more Pd. You might not think this is possible but with me, it is. You can disbelieve whatever you wish, it will not change the fact that my Pd is on hold as long as I continue to exercise. Not just any exercise but fast walking for one hour, three times a week. Why then do more people not exercise? Good question! Only determination and dedication to exercise can overcome the reluctance to build up to this position.
Where do you live? I am on my way to Eng;land tomorrow and will be there for ten days, after taking a cruise for two weeks. Talk to me! Be as objective as you can, but don't just Pooh Pooh the whole thing as impossible>
John
John as you say you cant change what is, and that includes being told by your last neurologist that you never did have PD, you were misdiagnosed.
When do you expect your scientific proof to be public? Why has it taken so long??
Hi Hikoi. I have been told that the evidence will be published in January. As I am not paying for this to be done, I cannot query why it has taken so long.
John
Hi John I have found your book interesting and helpful.I read all your posts I feel you are really trying to help parkinson sufferers val
thank you for your moving story...
Hi quirkyme. If only other patients would accept my story and learn from it. I did not ask for this to happen to me. It would be such a shame if my story were to be lost for ever because of lack of belief!
Kind regards
John
John, everyone has a story and our job is to listen to each other. Each person's story is as important and meaningful to them as yours is to you. It would be a shame if even one person's story is not told and passed down to future generations. Somewhere along the line, our grandchildren will be proud of how my husband coped and struggled and mostly triumphed over a tough disease. Everyone's story needs to be told and heard in its full meaning.
Hi quirkyme. I agree with you. Even if the story is just trying to explain how frustrated we get, when we can't do what we have been able to do, all our lives. However, if we find a way to do something differently, and it works, then we have an obligation to tell others how we did it. We are all different. We all have our own ways of doing things. I respect that! All I can do is tell others what has worked for me.
Kind regards
John
may I add the proviso that what they find that works may be totally different than what you found.
Hi quirkyme. Yes! Of course. As we are all different, we must expect different outcomes. I find that around 30% of the people I talk to, get benefit from what I have told them. That is still a lot of people.
John
Yes, John.
Everyone has different symptoms and PD issues. Everyone has a different course.
Everyone's body is different.
Everyone's body will respond differently to meds, treatments, AND alternative meds.
My husband wouldn't touch coconut oil or alternatives with a 10-foot-pole. And he's doing well. Just expect that if you push your own story and treatment success too often and too hard, you will be seen as a peddler. And get push back on it.
Hi Quirkyme
Yes, I am often accused of trying to sell something. Yes I do try to sell my book, but that is only to give people the full details of what has happened to me. That cannot be done in this or any other forum. If anybody thinks that it costs nothing to write and publish a book, then think again. I sell it at a price that covers the cost of printing and delivering it. The cost of getting the book out there I have paid myself.
At the same time, I have offered over 400 articles on my website, many of which I wrote myself, all at no cost to the reader. Very soon, I hope, my story will be investigated fully by scientists. Then everyone will know it is for real. Until then, I just keep plugging the story, hoping that more and more people will emulate it and reap the benefits.
Thanks for your comments and good luck with your husband's battle with Pd. I admire determination!
Kind regards
John
That's a lovely feel good story john, thanks for sharing. And to parky losses....our paths are ever changing . Even before I was diagnosed major walls blocked my happy life path. And even since my parkinson they continue to appear. All I can do is keep chipping away , climb over the rubble and get back on whatever path lays ahead. After a while you become numb to all the traumas life brings and normalise them almost, enough to carry on.. So it's not a double whammy but an extra thick wall to break down, we've all had them at some point and who knows what lays behind that wall, maybe something more wonderful than you had before or as good as. Even with Pd. John is an inspiring example.
I feel your pain, but if you allow it to consume you it will hurt ten times more believe me. You just need a sledge hammer for this one and a bit of time ...
Four years ago I confronted my husband with his philandering and walked out of a marriage. I had been diagnosed with PD for 10 years and I had no idea what would happen to me, how I could cope alone . What I didn't know was that I was never alone , there are always friends , family and even future partners.
Reach our to others . Everyone needs help in some way . It will be paid back to you times seven.
Good luck.
Don't sit on your hands get help.
DEPRESSION is a one way downhill slide get professional support from your MDS Specialist. If you don't have one get one quickly. S/he has medication and advice to help you get back you life
Parkylossess. Sorry to hear your pain. Remember that nothing is static and after every hardship there is ease. This is a learning opportunity for you to look at yourself and find out what you need to do to feel whole again. Remember that your self worth begins with loving and valuing yourself. Get that bit right and the rest will follow. The pain and ache that you feel will leave if you let it go .After that who knows what lies around the bend in the road? Be selfless and give of yourself to others and just observe how you feel. It will be wonderful. Just don't become a victim because that's exactly where PD thrives.
Best wishes
Hello Firefly0780
What a sensible reply you have given Parkylosses. Deep. Much truth and common sense contained within. I hope that he can see where you are coming from and begins to heal from his hurt.
Kind regards
Norton1
Thanks Norton.
Sharing and supporting others is one way of not becoming a victim.
I will pray for you. Do not lose hope. God loves you as you are.
Life does throw us curveballs...but we just need to keep swinging. The stress of a big life change is always tough, and doesn't help PD. This may be the time to develop a hobby, join a group at the senior center, try a new activity. I find these chat activities helpful. It keeps you in touch with people. I just got a puppy ...it is a positive new life...fun to watch and laugh, and a reason to keep moving...good for someone to take walks with...pets also help lower your stress level. Just a thought.
so sorry 4 ur loss we all lost someone so we really understand God bless u
I m sorry for your loss on many levels, while anything I can say or offer you seems shallow, I will still write you some of my thoughts. Parkinson is hard enough with out being alone, Even if you don't feel like it ---
1) keep moving, go places -- easy comfortable places
2) don't shut your friends out-- in a split there are her friends, your friends and real friends
3) keep hydrate and eat, even if your stomach says no, try english muffins or ensure drinks
Meds are hard on an empty stomach
4) sharping up in the faith dept and church. ( without my faith I would be a basket case)
5) Fined a hobby---I quilt and sew MY husband does jigsaw puzzles, large pieces 275 to 300.
As a online community we can only offer ideas, and prayers, the rest is up to you.
Take care Better days ahead. Kadie
I am so sorry for your losses. You are in a hard life-transition and yes, grief will have us crying ourselves to sleep at night. See if you can find a therapist who helps with divorce. And despite this keep active, make friends, get out, eat well, don't let clutter build up in your home. Take up a hobby. you can walk and that's the one thing, exercise, that has neuro-protective qualities.
Crying doesn't make a human weak. Losses make us break down and find our humility and gratitude. There must be things that you are grateful for. Keep a gratitude journal (look it up online). It will switch you from thinking off all you've lost to seeing all that you still have going for you. Many people here would be delighted, if like you, they could still walk.
Being diagnosed with PD can be very traumatic. When my husband was diagnosed 10 years ago, I got online and searched for "cure for Parkinson's Disease" and of course, most of the search results began that phrase with "there is no ...". I read so many dire predictions of what someone with PD should expect in the future. It seemed to me that almost every site was aimed at destroying hope, it was hard to resist just giving up and wallowing in depression. So I can't blame Lizzy7 for her negative response to JohnPepper.
From what I read I believed my husband's health was in a steep dive to the end and our lives were over as far as having anything positive to look forward to. Parkylosses, your wife might be feeling the same. She may be drowning in fear and let go of you to try to save herself. I am hoping for you that as time goes by and she comes to terms with your diagnosis, she will remember why she fell in love with you and realise that you are still you, you are not this disease. If she is eventually willing to face this challenge with you, it could actually bring the two of you closer. This has been my experience.
Like JohnPepper, I would like to offer you hope for the future. It has been our experience that there are positive things you can do to improve your general health that will greatly reduce the negative effects of PD, possibly even halt its progress.
My husband went through some hellish times before we discovered it was his PD medication more than his PD that was causing him long painful 'off' periods. Once his PD specialist found the right combination of meds for him, and we also found the right diet that worked best with the meds (nearly vegan), he was able to move more freely and do more exercise, which also helped improve his health and well-being.
I am lucky that my husband never gave up - he sometimes felt suicidal when he was in pain for hours on end (due to his meds, or animal protein interfering with the absorption of his meds). But now he usually has very short, much easier 'off' periods. Diagnosed 10 years ago (after showing symptoms for many years before) and now age 67, he is still working in our family business and pulls his weight at home, he walks for miles enjoying geocaching, he rides bikes, lifts weights, and he is even learning karate - about to go for his 5th belt. I would say that 99% of the time he is coping well, content, often downright happy.
From what I'd read in the early days, PD medication loses its effectiveness after 5 or 10 years. But there are exceptions - Michael J Fox was diagnosed with PD 23 years ago, but his meds are still effective. There must be other factors at play.
Here are some practical tips for trying to thrive with PD, based on our own experience;
1) Don't just accept the PD meds you are given first - if they are not helping you, or are causing you any painful spells, work with your specialist to find the meds that work best for you.
2) Eat a plant-rich diet and try to cut down or eliminate animal foods (meat and dairy) from your diet. Animal foods have too much hard-to-digest protein which your body will concentrate on breaking down and absorbing before your meds, sometimes to the exclusion of your meds. Plant foods contain enough protein for life and it is quicker and easier to digest than animal protein. Plant foods are brimming with vitamins, minerals, phyto-nutrients, antioxidants, beneficial enzymes and also provide the fibre you need to avoid constipation. Fresh home-made smoothies and fruit and vegetable juices will quickly feed your cells and give you amazing energy as well as make you look younger and feel better. They are a super way to start each day.
3) Cooking plant food destroys the living enzymes in the food, making it a little harder to digest. Try to eat more fresh plant food, at least make sure you eat something fresh with every meal to help make the whole meal easier to digest.
4) Drink plenty of water and other healthy liquids. Our bodies need water to transport nutrients into our cells and toxins out of our bodies. According to Dr Batmangelidj, author of "Your Body's Many Cries For Water", too many of us are unintentionally chronically dehydrated, and simply adjusting our water intake could prevent, reduce or reverse many painful conditions.
5) EXERCISE! Walking in the fresh air and sunshine will not only strengthen your whole body, it will fill your lungs with life-giving oxygen and create vitamin D on your skin, both crucial to life.
6) Think positively - don't let dire predictions of the future get you down. They might be wrong! A cure might be just around the corner. I always tell my husband he is getting better, and there is no doubt he is better now than he was a few years ago. Our thoughts are extremely powerful. Your strength of mind can definitely soften the blows of PD.
When he was first diagnosed, if I could have seen where we would be in 10 years, I would have felt far more hopeful than fearful. Sending both you and your wife loving encouragement to defeat the fear and embrace the hope.
Thank you health seeker
I think that is so cruel, to leave after 47 years together. Whatever happened to the vows "For Better or For Worse"' For Richer or for Poor" In sickness and in Health until death do us part" I'm a firm believer what goes around comes around.
Take Care my Friend
I am so sorry for what you are going through. My husband tried first to ignore my pd diagnosis as if it would go away. After three medical opinions he accepted it and tried to separate from me by working longer and not wanting to talk about anything to do with the pd. I felt very alone and began to journal about that, and the loss I felt after 27 years of marriage. I wrote about how I felt more like a burden, as talk of him not being able to retire now made me feel very useless. He found my journal and read it and has turned around. He is pushing me to exercise, eat right and going to dr appts. He has also started treating me as a wife again and not as a burden, I feel like things will be ok. It is hard for us and hard for them. I dont know what the future holds but I have to look ahead. It is very hard somedays and I feel very sad, but just keep moving. Support groups such as this board help alot. I wish you all the best. Dana
I used to lead journal writing workshops. It was so helpful and affirming to people. Your story is amazing and I hope you keep writing (and that others will journal write, too). It is proven to be emotionally healing, a way to work through issues.
Do you have a real support group to attend? Makes all the difference in the world to get --and give--support and encouragement. And you learn so much from one another!!! Give it a try, if you can!!!
I do have a support group that I just started going to, was afraid to go for the longest time. Not really even sure why. I never journaled before the pd and it has been so therapeutic. I can get those feeling out at least. I have a journal app on my phone so i can write via voice comand. Thats how my husband was able to read it, no one can read my actual writing and it is very tiring due to dystonia. I think its great that you taught the journal class. I have also started writing my vivid dreams down, which makes for a interesting read. Nothing like PD and dopamine agonist dreams. Take care, Dana
Hi don't feel. Alone , I know how u feel but u will be ok . It is very hard but I assure u it can only get better.
I have had pd for 6 years and haveseparated from my ex husband for 8 years after 40 years but believe me I m better off without him .
Don't cry anymore and think she wasn't nice to leave u so u can cope.
All my regards
Shol
Hi Parkylosses
i am sorry that your wife has left you but she will be the loser not you!
you may not feel this at t he moment but you will in time and perhaps you will meet someone else??
a parky person or not??
lol jill
and a smile to start another we t day in England
sorry about the large egap between the 1st and second sentence
i have tried to edit it and failed!
lol JIll
hugs and xxxx
Dear Parkylosses, I'm so sorry that you are going through such a difficult time in your life. You must feel so alone and at a loss. Even though I have a perfectly nice, supportive husband, wonderful, caring children, and lots of health and home care help (since moving to s. America), I truly have come to this realization. To fight Parkinson's on a daily basis, we are all alone, and must not depend on others for our welfare and happiness. We can turn to other's for all kinds of advices ( John Pepper's personal example is the one I follow and totally agree with), but in the end, we must, each one of us, adopt whatever regimen on our own and implement whatever course of action, also on our own. For me, it comes down to basically two factors. Exercise hard and eat real nutritious foods. TAking advice from John Pepper and from Norton1, and after much research on my own, these two methods are what occupies me in dealing with this disease. In fact, after one month of the Paleo diet, heavy duty exercises, therapy, walking and intnesive stretching, I am truly so much better. I was just thinking of writing to the two gentlemen to thank them. Norton1 got me thinking of the Paleo eating way, and John Pepper's care and enthusiasm, finally got me to hire a therapist who treats other Parkinson's patients. I met him on a walk as he takes them out walking as they are more advanced than I am. However, one of them if 84 and has Alzeheimer's and Parkinson's BUT after 5 years with this therapist, she has reversed her symptoms, and is still not in a wheelchair!
I never spent a dime w/ John Pepper, but have gained all kinds of knowledge and hope for the future. He is absolutely right, I now do not need as much medication (mucuna pruriens) and my first dose is not taken now until noon to 1:00 pm. Yay! I hope to get off all medication and will keep John Pepper up there as my model.
Let me say that, the 84 yr. old lady has reversed her Parkinson's symptoms, in that she was not able to take large steps before, and was only able to do a very slow shuffle. I know nothing of her Alzeheimer's symptoms however. She was diagnosed at 79. She has a supportive family of many kids and grandkids, but what I'm trying to say is, when it comes to bettering ( yes, there is such a thing ) her Parkinson's and her wanting to be independent as much as possible, she is alone . She can be her own best friend, or her own worst enemy. At 84 years old, she chooses to fight - her husband died and everyone else is busy with their own stuff. .... or so I imagine the case to be. We come in to the world alone, and we manage and will pass to the next life all alone, too. But, we don't want to live as victims, do we, with or without PD.
This was so helpful to me. Thank you for all your positive thoughts. Thank God for this website. Blessings to you all.
HI parkylosses I have John Peppers book and I found it interesting and helpful.I also read his posts he is trying to help other parkinson suffferes.If you live in England there is a parkinson helpline you can ring and they are really helpful. Best wishes.
I'm so sorry, parkylosses. Do you have any friends or relatives that can get you through this? If not, maybe you could see a therapist?
Thank you Jocee for your advice.
I have a wonderful sister whom without life would be much more difficult.
Loneliness is the current problem as many "supposed" friends are "wilting on the vine"
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