Am I unusual?

I was diagnosed with PD in 2013. Was an active full time worker in a very active dangerous at times and certainly physically hard job for twenty three years. I have two very great sons and a wonderful wife of twenty three years but they don't get the PD!!!!

Life goes on I've been told get out of bed earlier stop feeling sorry for yourself was one of the earlier greatsūüėĄ .

I am now 52 and doing ok my wife was recently made redundant I felt terrible my pension as I retired to early wasn't enough how were we going to manage?.

This last week my eldest son has got the university of his choice and my youngest has joined a pro soccer team academy  and to top it off my wife has just landed a great job.

I don't care if they don't get the PD it's my disease I can deal with that. I know I am very lucky but there is hope for everyone with this disease just don't give up .

Just don't give up please.ūüėćūüėć

57 Replies

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  • Henry1244

    There is hope, for sure.

     Was diagnosed 6 years ago. I was more than devastated at first.

    But I have learned that most of the symptoms are manageable,.

    This site is a great place to home for understanding, compassion and suggestions

    Fight off hand,  exercise is extremely important!!

    Keep coming backūüĎć

    Blessings to you from Eva G

  • Thank you stargate I have only recently started to look at the forum and for the most part find it very helpful finding others with the same issues as myself thank you for your reply

  • God bless you and your spirit !

  • Thank you mad Amber and to you

  • Thank you madambee

  • Hi Henry. Fr a men who gets on and does what he can, no matter what the odds, this may well be what you are looking for. Just read through this and take the necessary action. I am not selling anything:

    We are all in this together. Some of us have taken control of our health and started doing things that help us to overcome some of the symptoms. Pd is still an incurable condition but that does not mean there is nothing we can do about it.

    In 1993, an experiment was carried out in Frenchay Hospital, Bristol, in which 6 stage-4 Pd patients took part. They each had a hole drilled in their head and a catheter inserted, which was joined up by a tube to a pump, and a container and battery to run it. Into this container they placed a substance called GDNF (Glial Derived Neurotrophic Factor) which is produced naturally in the brain. This was produced artificially by a company in the USA called Amgen.

    After 6 months of having the GDNF pumped into the brain, the condition of all of those patients improved beyond the placebo level of at least 30%. Some patients improved considerably more than that. That can be regarded as 100% successful.

    QUESTION. Why did they have to go to all that trouble and expense, when GDNF is produced naturally in the very area of the brain where it is required to repair damaged brain cells? Surely, the money spent on mimicking the GDNF and all the designing of all the equipment to get it into the brain could better have been spent on finding out how to get the brain to produce sufficient quantity of the GDNF to achieve the same result?

    In 2006, at the 1st World Parkinson's Congress held in Washington DC, the results of a study on the affect of exercise on the progression of Pd was announced by Doctors Beth Fisher and Michael Zigmond, and those results showed that many types of exercise produce this GDNF and the results showed varying levels of improvement, with high intensity walking showing the biggest improvement in the condition of the rats, monkeys and Pd patients taking part in the study.

    The probability is that this information has never been passed on to patients, even though it happened 10 years ago.

    WHY IS ALL THIS A SECRET?

    Why are our doctors not telling us to do FAST WALKING instead of prescribing medication that does nothing to slow down the progression of Pd?

    The answer to these two questions seems to me to be purely a finacial matter. That is my make on this subject, but I could be wrong.

    However! Just before the Bristol study took place, I was finally diagnosed with Pd, having had many Pd symptoms since 1963, over 29 years before then. I started doing fast walking in 1994 and by 2002, had recovered from most of my symptoms to such an extent that nobody other than neurologists would ever know that I still have Pd.

    I wrote a book about my experience and published the first edition in 2003. This met with a lot of criticism from our local Pd association, of which I had been chairman for five years, at which stage I was booted out of the association, being accused of misleading patients; claiming to be cured, claiming to be cured without the use of medication and using the association to sell my books.

    All of those accusations, which were backed up by two leading neurologists at an Annual General Meeting of the association, were entirely false. I have never claimed to be cured. I mention the medication I took over 50 times in the book. I was asked by the association if they could sell my book, to which I readily agreed. I asked one of those neurologists, at that AGM, where do I claim to be cured? Her answer was, "NO. you don't claim to be cured in your book but that is the IMPRESSION THE READER GETS WHEN READING YOUR BOOK!" Now how can I respond to that?

    Since then, I constantly hear patients tell me that their neurologist told them that I DO NOT HAVE PD, THEREFORE THEY SHOULD NOT LISTEN TO ANYTHING I TELL THEM!

    All this tells me that the medical profession does not want us to get better! That they would prefer that we have holes drilled in our heads and spend the rest of our lives with all this equipment in our brains and bodies, just to keep us symptom-free.

    I don't believe this to be true, although the evidence tells me otherwise. Most of my neurologists have been most helpful and have encouraged me to continue doing the exercise and have willingly given my medical records to Dr Norman Doidge, who wrote his latest book, "The Brain's Way of Healing" in which he wrote a whole chapter on my experience. From his book, I expect that one day, not too far distant, the medical profession will accept that exercise can reverse the symptoms of Pd, and it will be part of their training. But a lot has to happen before that becomes reality.

    In the meantime, patients like you have to continue to take medication that does nothing to slow the progression down and suffer the horrendous side effects of those medications.

    I have started to visit every English-speaking country, at my own initial expense, to show Pd patients how they are immediately able to walk properly, by using their conscious brain to control all their movements. I have not yet met any patient - who is able to stand up on his/her own two legs - how to walk normally! I spoke to over 2500 patients and successfully walked with over 100 patients. If I am spared I would be willing to visit other non-English-speaking countries as well. I do not charge for what I do!

    I have not needed to take any Parkinson's medication for the past 13 years and I still live a 'normal' life at the age of 81 and was able to travel nearly 20 000 kilometres to 7 cities in Australia in one month and immediately afterwards visit 12 different cities and/or venues in New Zealand the next month, without any health problems.

    You would think that Pd patients would be beating down my front door, but they are not.

    Not until doctors give their approval for what I am doing will others be encouraged to follow suit. I am only one man, doing all this for no reward! What more can I do?

    WHAT A PITY!

    John

    John

  • Your an inspiration John, intend to do my darndest to keep on keeping on as tough as it sometime s is..

  • Hi Ryan. We can only ever do our best. Keep it up and tell me how you are doing!

    KInd regards

    John

  • Will do have read the book was loaned to me by a friend of my son's have ordered a copy for myself thank you

  • I'm surprised there remain some who even bother to wade into yet another round of JP's rambling incoherence.

    This is the tragic tale of a fellow grappling with a tenacious case of paranoia over the Parkinson's association and a medical establishment that he feels has wronged him.

    This 'evil' bunch of conspirators has done this by calling him out on his daft decision to first author, then to dare market, a book recklessly titled, "REVERSE PARKINSON'S DISEASE" (all the while claiming innocence of any effort to mislead or exploit with his bold claims of disease "reversal").

    It's universally accepted that aerobic exercise is beneficial in mitigating the symptoms of Parkinson's. The fact that JP's book includes some discussion on those aerobic benefits (in his preferred form of 'fast-walking') does not in any way vindicate the fraud of authoring such a fallacious title.

    The fact that this glaring irony continues to evade him is instructive as to the degree of seriousness with which any claims by this poster should be taken.

  • Contrary to what you are saying the gdnf experiment was not a success. That does not mean that we should not exercise but your narrative is incorrect ¬†onward.

  • Hi Racer. GDNF is a natural protein that is produced by the brain itself. How can it therefor not be successful? THe second and third experiments were carried out 10 years after the first very successful experiment in 1993. Why did it take so long to do the 2nd and 3rd experiments? How could the 1st experiment by 100% successful and the 2nd & 3rd failed. That does not make sense. It appears that someone obviously did not want it to work.

    The manufacturers, Amgen, said the GDNF was dangerous and they stopped making it. The US gvernment was persuaded to make Amgen change their minds and start making it again because all the people who had received the GDNF insisted on continuing to be able to use it.

    THe artificial GDNF may not have been as good as the natural GDNF but natural GDNF does work and the fast walking appears t be the best way to produce the

     maximum GDNF in the brain.

    My narrative is spot-on.

    John

  • What do you mean by "intensive walking", "fast walking"? How long in time & distance?

  • Hi Robert. When I say "fast" I mean as fast as you are able. How do you know when you are walking as fast as you can? If you are not breathing very heavily after one minute of fast walking, then you are not walking fast enough. If you are unable to talk at all at that speed then slow down a little and maintain that speed till the end of the walk.

  • i am in absolute agreement 100% with you John, but for one line of an otherwise¬† excellent paragraph.......In the meantime you have to continue to take medication ....that is absolute BULLDUST!¬† You do not have to put anything into your body that you do not want to.¬† The medics or whoever will just whinge o

  • and on and on!!¬†¬† Don't I know it!¬† Not as regards PD goes..although I have a very mild form¬† so 'they' say!¬† Let 'them' say it!¬† Although I was forced into a situation in F ebruary last year when I endured a masectomy. At the time I was unfortunately not equipped with the information I needed (directly post- operation) to self- direct my own recovery and¬† AGAINST EVERYTHING I BELIEVED IN AND COUNTER ENTIRELY TO MY OWN INTUITION WHICH I HAVE ALWAYS TRUSTED 100% I agreed very very reluctantly to a course of radiotherapy. I only finally agreed because I knew that if I didn't and then died I would feel so guilty at leaving my husband behind.¬† I spent 3 weeks of sleepless mental¬† agony every second of every day. Oh my God! Oh my God! Oh my God! the DAMN¬† LIES MY ONCOLOGIST told me about" VERY FEW ,IF ANY," SIDE EFFECTS ! If I ever have the misfortune to meet up with him again GOD HELP ME!¬† Little wonder that he has never been in yough and I am doing just fine and the recovery is coming along just fine.

    Dear friends your healthcare is your own responsibility.  Who knows your body better than you do?

  • Hi Pushkin. I was making a general statement. If you are on medicaton when you start to do the fats walking then you should continue and then try to slowly come off a your condition improves. People are very touchy about advice on stopping medication, so I have to be careful about this.

    John

  • ¬†Did I not make myself absolutely clear?!!¬† I take no medication whatsoever especially after something the sugeon said to me!

  • Hi Pushkin. We appear to be missing each other. If you don't take any medication, which I am sure you don't then obviously this does not apply to you.

    I agree with your dislke of medication. It should always be the LAST RESORT.

    John

  • I repeat...I do NOT take any so-called medication and I am blooming.

    Thanks John, keep in touch..and keep walking!

  • @John-- there's a movie called Lorenzo's Oil with Susan Sarandon ( from the 90s maybe?) about a woman who's son --Lorenzo--had a rare disease that had something to do with how his body used a particular lipid, hence the title. The disease was rare and eventually fatal but she and her husband joined a "support group" and quickly learned that no one besides themselves were really interested in finding a CURE or ANY kind of effective treatment! They grew 'too fond' I guess of the warm, and fuzzy feeling of victimhood maybe?

    As she and her husband learned more and more and essentially became LIKE YOU JOHN-- QUALIFIED medical researchers!-- they were ostracized from the group!

    Five years ago I was at my pain clinic getting an EMG done by an osteopath (aka physiatrist, DO) who shook her head at me saying, "For someone with a sedentary job, you sure get a lot of ligament injuries!" I said, "In my family this is nothing. I sprained my ankle getting out of my car in 1986 and walked up the aisle at my wedding the next day with it taped up! Couldn't dance at my own wedding! Haha." She said, is that so? Your whole family's that way?" She asks me to demonstrate how "bendy" I was. I left looking at the odd words she had scribbled on the back of a prescription page and the geneticist's name I'd have to go from northern Virginia up to Baltimore to see. "Ehlers-Danlos Syndrome." My elder son was with me that day and on the way home we puzzled over about how the Dr. WAS RIGHT-- maybe what we just accepted growing up in the 50s and 60s was ACTUALLY A REAL THING BESIDES JUST A "FAMILY TRAIT!" 

    My son and his dad had NO IDEA (no one knew but my parents!) that in 1981 I had gotten into a prestigious medical school and my best friend had married a pre-med friend of mine who went on to be a well-known neurologist--thus supplying me with enough neurology jokes for a lifetime. But my basic understanding was pretty good, I knew medical terminology that laymen wouldn't know (NOT a good thing like you'd think--not knowing HOW I knew those words made many assume I was an Internet research NUT! In actuality my Dad's mother was a midwife--so in WW2 he was made medic in his company on D-Day plus 6, when the first corpsman was killed and he grabbed an old Merck Medical Book off him, which my dad eventually gave to ME when I was all of 7. THAT was the real source of basic medical terminology. I'd often start out a consult w/ a new specialist by saying "to save time, just use medical terminology, don't slow down to explain it, okay?" But Ehlers-Danlos was NOTHING to what was coming! And only a few months ago did I get to the REAL medical mystery diagnosis. What it was doesn't matter here but what I LEARNED was that most people put on a Devastating diagnosis like a warm coat in a stiff breeze, and others will say, I'm not the ONLY person with this, what's going on with the RESEARCH?? And DIVE IN looking for answers. Fight? Or Flight? Accept your DOOM or TRY to get WELL? Or Better? If you try to get even marginally better you'll meet resistance. From MDs who have NO intellectual curiosity- they write prescriptions is all. Or "friends" who either say "get on with your life, such as it is" or "you're obsessed" and even your family will GLADLY verbally condemn you for trying "too hard."

    Keep going John. When my mom had dementia (and died) 9 years ago, the US drug companies were advertising several "medications" to "treat Alzheimer's." All worthless. Are these meds still available? NO, AND NEVER SHOULD'VE BEEN. It was a LIE, just like cholesterol is a BIG LIE based on bad science. And yet 99% of patients just go along with whatever they're told. I AM NOT SAYING THAT'S WRONG. But we are all unique and doctors and patients are FALLIBLE FLAWED HUMANS. That doctor isn't God! And YOU might be somewhat different. 

    That day at my pain clinic was when I plunged in! My oldest nephew contacted me recently because he had had 23andme genetic testing too and on my account had popped up "male nephew." I texted my two sons, and said, who do you think is THAT male nephew? One of them said, Just call them--there are only 7 other male cousins! Well, he emailed ME. I said, why'd you buy this testing? He said, curiosity about our English and German ancestors. But I quickly realized that his young sons, twins, had some symptoms that even baffled his wife, a neo-natal intensive care nurse. My brother had told him, call your aunt up in DC. But he didn't want to waste my time until he had a more solid hypothesis. I said after 30 mins on the phone--Do you see Tim? It's PANDORA'S BOX; it's the "Tree of Knowledge" in Genesis! You opened the box and you can't put it back in. Once you have that knowledge of your genetics, YOU will always be 100% in charge. If you disagree with a Dr. it's gonna be ALL ON YOU. You will ALWAYS be the one who has the last say, and if you make the wrong choice--there's no one else responsible. He replied, "Better ME than a stranger don't you think?" Yes, I said, but be READY. Be certain. You're about to become YOUR OWN doctor. He chuckled. But then said soberly, "yes. I know."

    Anyone who read John's story and mine and recognizes themselves, should think long and hard about who they want "in charge." You? A spouse? A person with "official" but only GENERAL knowledge? We each of us has to choose.

  • Hi Pauline. Congratulations for having the BALLS to say it as it is!

    Kind regards

    John

  • Thanks John. You're a kindred spirit!

    My cardiologist told me recently that my wild ride of a case taught him a very important lesson: Never underestimate what the patient says about their own body!

    Doctors listen to your "complaint," saying "what brings you in today?" Right? So you say, "well, I'm having XYZ which hasn't happened before." And as you elaborate (he'll give you a minute or two to do that) but if he's unfamiliar with the circumstances and bodily response, he starts to think, this person doesn't really know what he's feeling with any accuracy, his account is just imaginary, or he's obsessed with his health. He's giving me a nonsensical account that is COMPLETELY SUBJECTIVE and therefore INACCURATE descruption of their symptoms. But in reality, the patient has NO physical experience OTHER than the one in which they themselves LIVE their entire life! If you've "always" had tachycardia, but no one's ever said, "Wow, your pulse rate is really fast" when someone finally DOES say "How long has your heart rate been so fast?" you'll be at a total loss probably and say, with complete honesty, "I don't know, I've never NOTICED IT." Because they've been living it for a long time and it's all they know.

    So after you list the things that aren't USUAL things for YOU, and if you don't know exactly what organs do what in the human body, you'll lift your shirt and say, "It hurts around HERE."

    If nothing you say is consistent with something they're familiar with, the doctor is already thinking, "that can't be true, it's too unusual, too rare, statistically unlikely!" So he tells you that "Well, it might seem to you that something is really wrong, but really, you're fine. Don't worry about it. If you're not in a LOT of pain, and there's no blood in your urine, if you have no history of kidney stones, we don't want to overuse antibiotics do we? I really think all you need is Tincture of Time. If you develop a fever, THEN give us a call."

    You've just been told that YOU ARE WRONG about what your OWN experience IS. Human nature is that when our body isn't behaving in its USUAL way--you'll think back and try to find an external cause, or wonder if your body doesn't like what you've eaten, or a new medication, or do you actually have a physical MALFUNCTION...?

    I recommend that before anyone ever seeks diagnosis or treatment for ANYTHING, that they watch on youtube Jonathan Miller's series from the 1980s, The Body in Question. And head to the local library to find a book published in 1966 called The Psychology of the Sickbed by Jan H. Van Den Berg. Both deal with what it takes for a person to go from total autonomy to being "a patient." Like forgiving someone who has wronged you, becoming a patient requires an act of the WILL. And usually the transformation from PERSON to PATIENT is done under extreme duress from pain or rapid progression from NORMAL to ABNORMAL.

    In my prior post in this thread, I mentioned being sent to a geneticist in Baltimore. She said, "you're quite lucky you know, that a doctor spotted this in you. Most people seek a diagnosis for symptoms of Ehlers-Danlos for ten years or more." I was taken aback. It didn't seem all that serious to ME. I asked, "what drives them to seek the diagnosis at all? How serious is a sprain now and then really?" I was sobered by her answer. "The pain drives them. The pain is so overwhelming." I was only 51. I had a lifetime of sprained ankles. Only three years before I went home from my knee replacement and I sprained the ankle in the other leg getting OUT OF BED the next day! At the time I didn't think a THING about it! (A total knee replacement at 48? HEY PAULINE, God was shouting, PAY ATTENTION!!) Now, I'm braced at every large joint and live with three fingers on my dominant right hand permanently dislocated and splinted, and have SEVEN inoperable ligament ruptures in both ankles and wrists and I my ascending aorta about to DISSECT! Because I thought braces as prophylactic was "silly." That was then, and it seems like I've turned into an OLD LADY in less than eight years. So the PD is just icing on the cake to me now! I lamented for two years that I "just want a normal life!" A wise friend said, "Polly, there's no such thing as a NORMAL life. There's just LIFE." She was right. You become your own expert REALLY QUICKLY. I really think it's the best course of action. Better that than INACTION, right? Right.

  • WOW!!!!!!!!!!!!!! WELL DONE INDEED!!¬† CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  • I loved everything you shared Pauline19!!! You are right on target!!!

  • John, ¬†I disagree that (some) neurologists don't want PD patients to recover. ¬†Its simply that neurologists want people to get better on THEIR TERMS. ¬†Translation "Pop a pill." ¬† MD's have, as the result of the emergence of antibiotics, become totally enamoured of pharmaceuticals and the companies that produce them. ¬†Perish the thought that people might get better by relying on the resilience of the body, and simple things such as exercise, a balanced diet and an upbeat attitude. ¬†How can any of this be harnessed to "make money" for the medical profession? ¬†Come on now !

    Parkinsons is a degenerative neurological condition that ultimately leads to termination of life.  OK we get that.  Staying healthy and fit is something to strive for, as long as it is possible.  The way to do that is focusing on being active, using one's muscles and brain, working on balance, allowing the plasticity of the brain and training to stave off deterioration.   It takes work.

    A lot.  There aren't shortcuts and you can't pop a pill to make things right.  Sure you take your carb/levo pills to supplement dwindling dopamine.... but you've got to exercise and train too.

  • Great job, John Pepper!!! ¬†I believe are right! ¬†I hope to do the same thing you have done. Am now taking taichi ¬†and qigong classes. Also do.oing more walking. ¬†My wore says she is noticing a big difference in my PD symptoms. ¬†I have noticed also. ¬†

    There are more and more people who are reporting remissions from PD!!!  

    Leon

  • Thanks Leon. THe more people who post their successes on this site the more others will take note.

    John

  • HENRY.

    I Was born fighting, since diagnosis have won a rally championship,  written my first book, started a new business with my son. Yesterday my lovely wife had to carry my bag to the plane. Enough Parky leave me alone  I stare him in the face - damn you !

    Everyone has it different,  I am lucky so far I am winning the fight. 

    Other folk do not get PD and how it affects you.

    All I know it is c.r a.p. but where there is life there is a fight !

    Alistair 

  • Cheers alistair

  • Hey Henry¬†

    Don't despair.. Good that all your family are doing well but you need looking after as well . I had a physical job for nearly 40 years and it's hard to come to terms with your disability...Yes disability because that's what you've got ..and has a disability you can get help.. Which is what you're entitled to. Look into Pip from the government on Gov .com. Keep smiling Martin..

  • Thank you for. That I will do

  • Henry1244 In answer to your question

    YES, you are very unusual. If you look very closely at the others here, you will see they also are unusual. ( Some are a bit weird if you ask me)

    Tougher, more determined, facing an unknown, being as self sufficient as possible. Trying to not be a burden.  They fight the fight of their life, as do you. You know that you will get knocked down.  Many times actually. However You know now that you will not stay down.

       The fighter , Muhammad Ali  said:

    ¬†‚ÄúOnly a man who knows what it is like to be defeated can reach down to the bottom of his soul and come up with the extra ounce of power it takes to win when the match is even.‚ÄĚ

    Please keep posting

  • Will do gym bag thankyou

  • I ¬†am 10 years with Pd and lead a normal life despite Having PD.

    Kicking PD's ass and enjoying life

    Just finished the Crossfit games (google it) and finished 92 nd out of 500 people in my age group. 

  • Looking it up now cheers bailey

  • Your family can bury their head all they like but it won't change the fact that you have Parkinsons . .

    You sound like you have a good spirit but do not feel guilty if there are times when you can't do what you want . I am sure you are pushing yourself  it's what everyone with Parkinsons is doing . i daresay you have been fighting it for ages , after all Parkinsons doesn't happen over night . It's not something that you catch , infectious. 

    Very good luck to you .. Just keep in touch on this site .  

  • What a wonderful husband and father you must be. You obviously love your family very much. Do try to get them educated re: your condition by obtaining or downloading info. that they can read. You deserve their understanding. Your positivity has cheered me up! Good luck! X

  • There's nothing to be gained with negativity hard as it might be thank you for your reply

  • I hope I do not have to repeat myself, but never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, 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never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, ever, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, never, give up to PD.

    Rik from Pittsburgh, PA, USA

  • I Agreeūüėú

  • You really should give credit to the quote.

    Winston Churchill drunk

    I see this string has been interrupted , stolen and like so many before the thought has been lost.  The disagreements continue as they always will. 

    I will end this period of commenting with two more quotes from

    Muhammad Ali:

    ¬† ‚ÄúI know where I‚Äôm going and I know the truth, and I don‚Äôt have to be what you want me to be. I‚Äôm free to be what I want.‚ÄĚ

    ¬† "God gave me this illness to remind me that I aint Number 1, ¬†¬† he is."ÔĽŅ

    I will be back

  • We need to hear that frequently: "DON'T GIVE UP". Have faith in God.

  • Families find it hard to accept that the person who did it all, sports etc... now has difficulties. My kids did not help as much as they could when I got Post Polio Syndrome because they thought if I could still manage doing it I was ok. My husband has both PPS and Parkinsons and it has taken time for his family members to accept this extra difficulty especially as he pushed himself always to achieve things everyone said he could not with polio... ¬† ¬†Our suggestion is to talk with family and friends in groups and suggest two minutes each to speak about how you feel about each issue. It was eye opening how much I did not realise my daughter was worrying and planning for what she thought her future would be... ¬† first thing she asked.. when will I have to wipe your arse.... ¬†and that was 13 years ago and still no need but she had been worrying for two years without speaking about it.

  • I think we all approach this condition in different ways, according to our personalities. I don't see myself 'fighting' or 'battling' PD - more accommodating it and finding ways to live my life around it. I've always been a negotiator. I like to see myself as flexible, but my husband says that's just another word for manipulative - if I don't get what I want one way, I'll try another! I go round things, not through things. But as Gymbag said, I have the characteristic of most of us on this site - determination. I'm determined to have the best quality of life possible. I change the things I can, I accept the things I can't, not always gracefully but I try. I've changed my lifestyle to manage my PD. I exercise much, much more than I want to, I eat as healthily as I can. I do take some medication, but I research, question and approach it cautiously. Right now, I'm stiff, but I'm heading to the gym. Tuesday, I'm getting a plane to Amsterdam. My immediate family know - they deal with it in a very matter of fact way. I hope they take their lead from me. If I need help, they give it. ¬†They accommodate it too. I plan for what the future may hold but I try not to project worse case scenarios. I get a lot of hope and inspiration from people on this site who have been dx'd many years and are still living well.

    Tomorrow I have an appointment with my Parkinsons nurse. I find that difficult - for some reason, we've not hit it off. I must try harder!

    Sue

  • I must respectfully disagree with your husband!

  • You will be all right Stevie

     There is a big difference between planning and worry. Don't worry so much be happy. Start planning.

     

    Muhammad Ali: said "Float like a butterfly, sting like a bee"

    That has absolutely nothing to do with anything.

    I just like it.

    Did I mention that a bit crazy helps. Perspective it is all perspective.

  • Stevie, just started neupro yesterday and felt feverish, nauseous, chilled and dizzy. Feel better now. Does it take time to acclimate to it? ¬†By the same token I am less stiff and tremor lessened.

  • Hi Racer. I think we're on different meds - I'm taking ropinirole in the form of a slow release tablet - but my experience was that it did take my body time to acclimatise. I started with a low dose and tirated up. I was nauseous and also a bit feverish. For me, it did wear off, I'm not experiencing those side effects now. If it hadn't worn off, I was planning to see my GP.¬†

  • One thing my first DR, ¬†told me and my wife is to tell every one and have a good talk about it put Pd in a box and to not discuss it at all if any day to day. This may sound hard to do but it works. I can bring it up and we talk about it but my family for the most part does not. They talk to each other but not to me as a rule. Having to explain how i am doing or feeling can add stress.¬†

    Try it it makes life better on me. This may sound selfish and it is but it helps me and they all understand.

  • I always talk about how good i am doing and my personal best at Crossfit. ¬†i still have my days i hurt, have stiff hands,get depressed (mainly in the evening) but i just take the time to let run it's course. ¬†i get away from every one and just do my best. When it is over i forget it and move forward. ¬†i focus on the good ¬†and forget the bad. ¬†i maybe have 3 days a month that are bad and not a full day maybe 2 or 3 hours.

    One thing about me is i do not get sore muscles no matter how hard i work out the lactic  acid does not stay in my muscles. This is why i can work out day in and day out.

  • Did you try to apply for Disability? I do not have Parkinsons ( my mother does and she is 86 years old). I have another illness which with the help of an attorney I was able to apply for disability and I got it on first try.......I understand many who try for disability without the help of an attorney get their disability request turned down and they end up reapplying. Disability money comes from money you have paid in all the years you have worked and if you are really disabled then you are entitled to it. Are you collecting Social Security early? If not, check out getting disability payments. I practiced as a Registered Nurse since 1977 and my monthly disability payment is $1893.60/month .....it's not what I earned when I was working full time BUT it is better than nothing. Since your wife works this would be more income to your household to be spent on you for Doctor appointments, clothing needs you may have, other needs you may have like housing, food, etc. The disability offices make it clear what the disability money should be spent on... On your care and needs.

    It was not clear to me in you write up if you had disability or not, so that is why I shared the above information. Disability money also can be used for medications you must take for your disability.

    There are groups available for people who have Parkinsons Disease so they can share the ups and downs, misunderstandings about the disease. These groups are very supportive. They also have Parkinsons Disease Groups for The Caregiver and the families which I would strongly encourage your wife and sons to attend. You could call the Parkinsons Disease Headquarter and find out if you have local meeting sites and their dates and times.  It is really so important for your family to have an understanding about the disease and what you are going through. It is also important for you to have the support from others experiencing the same thing you are going through. If your family won't go to meetings then I strongly advise you to be proactive and go to meetings on Parkinsons Disease for yourself. You will not be sorry.

    By the way, your disability money is to be used for you...not for your sons University and Soccer Accademy expenses. When I was their age I had to get a job and pay for my own college and extracurricular rowing team expenses. My parents could not afford to send me to college. Well, I did it and I did not feel resentful because I knew my family could not afford furthering my education. I appreciated my education more and tried harder, got down to business rather than playing around because IT WASMY HARD EARNED MONEY PAYING FOR MY EDUCATION and I was not going to play around, skip classes and get bad grades and waste the money I invested in my future by going to college.  I have a step son whose father footed the bill for him to go to college. This kid hardly ever went to classes. His dad paid for a rental house he shared with his male friends and it became a party house....needless to say they all skipped classes. They all failed classes too. They did not mature/ grow up during this time. College is expensive and look at that waste of money for education that was not seriously utilized. We are NOT rich and the step son had his chance at college and blew it. He never returned to college due to being immature and irresponsible. If HE HAD TO PAY FOR HIS EDUCATION I bet you money he would have been at every class and not skipping out. 

    The step son is now married with three children and a wife who does not work. He is in a fair paying job. He could return to the university taking a class at a time ....paying for it himself. Lessons learned the hard way I guess.

    Sorry, I got off on a tangent!!

    You need to look out for you. Many People who have Parkinsons Disease are depressed and benefit greatly with therapy with a Social Worker.  Do not try to fight the depression alone. Admit you need the help and again be proactive and get the help. My mother was in denial for the longest time and very angry at the neurologist who diagnosis her of having Parkinsons Disease. She was angry at everyone, depressed, very difficult to be around and she pushed people away from her with her angry outbursts. Mom refused help.

    At that time she was able to still walk, drive. She is now 86 and cannot stand, cannot walk, needs help with activities of daily living like bathing, grooming, household chores, etc. She stubbornly refuses to go to a care home facility and we currently have someone coming to the home from a Homecare Agency to assist her in the AM with AM Care...bathing, toile ting, grooming, breakfast.  Someone comes at noon to check on her needs and give meds and lunch.Then she has someone come at 8:00 PM to get her ready for bed. My dad is alive and is 89 and lives in the home but lifting mom is getting to be too much for him to handle like if she needs to use the bathroom when the help is not around. Dad does not want a full time live in caretaker which is what is needed and it would be expensive.  Mom needs to get up during the early morning and dad is no help. This is something we must resolve.  It would be cheaper than living in a nursing home to have someone available at nighttime so mom could get to the bathroom. This would still allow mom to remain in her home and get good care cheaper than placement in a nursing home.

    My point is this, Parkinsons Disease is a very serious illness, one not to be taken lightly by the patient or family. It is nothing to laugh at or treating the patient as if there is nothing wrong with them. Family and patients need to be educated about this disease, what to expect, and that even if symptoms are not obvious at first they eventually over time will become more apparent and you need to know what help and resources are available for you.

    This disease affects both young and the old. Disability is available to those who feel they can no longer work with this condition. The Department of Aging in your state should have resources available as well as the Parkinsons Foundation and your Neurologist.

    Enough of my rant!ūüėá I hope I have been helpful to many people out there!!!

  • Thank you for your reply I have found it very interesting I will act on the information you have given me

  • Best wishes to you Henry1244!!! I want only the best for you!!!

    I do care. You are young, so if you are not on disability.....

    do investigate into this. It could be very helpful  for you financially and as I said , you have paid into it already  during all the years you were employed. That is what Social Security Disability is there for. ... for when you can no longer work due to your illness.

    Bless you Henry!!

     

  • PD is a progressive disease. It may remain stable for years. Did you get a second opinion? you could benefit from being examined by another neurologist, especially a movement disorder specialist.

     My husband had good days and bad days. I am an RN so maybe I took his diagnosis differently from the average lay person. I encouraged him to stay active but also understood his limitations and did not push him beyond his capabilities.

    You may benefit from a support group to speak with other people with PD and learn from their experiences. Your family would benefit from a caregivers support group to learn from others how they deal with PD and helping their loved one. I would encourage them to learn about PD and the myriad symptoms.

     Best of luck to you. Keep in touch here.

  • Thank you ¬†it makes a lot of sense to seek out fellow sufferers I suppose but I am only 52 this month and I would benifet more from a same age group I think not really sure but I'm still a Peter Pan in my head but I really appreciate your interest and I wil try and get to a group of some sort¬†

  • Hi Henry. I see you are in the UK, same as me. In my area, the local PD group has a kind of sub-group, for people able to be more active. You can find out where your local groups are through Parkinson's UK. Although I have to say, while I find this particular forum utterly invaluable, and I have from the moment I joined, I kind of prefer to meet people doing stuff I enjoy. In my yoga claas, for example, there is someone with PD. I'm eyeing up someone at my gym (in a good way) who I think may have this. We are everywhere, not a breed apart! I haven't checked out the Parkinsons group yet, but I will.¬†

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