Why have I got Parkinsons?: Why me? - Parkinson's Movement

Parkinson's Movement

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Why have I got Parkinsons?

Cleo16
Cleo16

Why me?

68 Replies

Why not you?

I often think that it's the biological consequence - stigma if you prefer - of very long-term, profound, anxiety.

JayPwP
JayPwP in reply to Xenos

I too

delboy381
delboy381 in reply to Xenos

That's right, I agree with that statement. That's the case with me. I had a tremor at the age of 22 when I was working as a waiter and it all started at the age of 13 when my father died, it was my first childhood trauma. Everything starts from the stomach, it's the other brain.

pdpatient
pdpatient in reply to delboy381

@delboy381, sorry to hear about your very Young Onset Parkinson's Disease. Would you like to share your thoughts and life experience after diagnosis?

RKM

delboy381
delboy381 in reply to pdpatient

I mispronounced I thought the first sign of pd came to me at age 22 (tremor). I led a normal life until the age of 39 when I was diagnosed. Throughout my life I was accompanied by that anxiety from the traumas I had through childhood, growing up. To get rid of it I chose alcohol, friends, tobacco. Don't get me wrong I didn't drink often. When I stopped smoking and drinking alcohol parkinson appeared. There is a saying what should have happened that you could not get around. We all have a past, a story ... I know how this came into my life.

I also choose to believe that he will leave my life with God's grace. He will send a solution somehow I believe in that.

My dear God pours out his goodness and mercy on each of us at a time when he should.

He knows best when and how.

Until then, let's be strong and positive.

All the best to everyone here.

pdpatient
pdpatient in reply to delboy381

@delboy381, I empathize and commiserate with you. Childhood trauma was pervasive in my life too. Maybe, that is a common thread?

RKM

delboy381
delboy381 in reply to pdpatient

Thanks, I also send empathy to you. Analyzing these years I think it is. When I add stress to that it's many factors included.

Living in a sympathetic mode, the influence of the environment on genes (epigenetics) lifestyle, diet, etc. I’m saying this for myself and maybe someone recognizes it and someone doesn’t.

Only 10% of things happen to us in life and 90% is a reaction to that.

Dr. Joe Dispaneza.

I agree? I think it starts in the gut

and also to Do with the reward system the brain receives

Exactly.

RobertoOcana
RobertoOcana in reply to Xenos

Whén i get into a stage of anxiety my symtoms of PD triplicate, can't even talk

Xenos
Xenos in reply to RobertoOcana

Same here... can't even use the telephone before noon :-(

Manypony
Manypony in reply to Xenos

The phone is a huge source of anxiety for me

Godiv
Godiv in reply to Xenos

I agree also. I’ve been anxious since I was a child and remember having panic attacks when I was gosh probably seven years old something like that. And I was thinking about other stuff: probable childhood exposure to pesticides because I grew up on a farm, suffered some childhood trauma, was exposed to the flea bombs in the house, and I have been drinking well water most of my life. Probably a miracle I didn’t get it before this LOL. But it does make you wonder what causes it or what makes a perfect storm of cofactors.

But perhaps it doesn’t matter unless we’re doing something today that is contributing. The thing now is to live life around it somehow, be as healthy as we can be and just keep going forward.

windhorsepixy
windhorsepixy in reply to Xenos

Maybe for some - but not for my husband. No anxiety - no depression - (that's my department). But he is an artist & exposed himself to paints, solvents, glues, etc. - plus all the toxins in the air (we live near an art glass factory that had a major air pollution lawsuit), water (? ), food (pesticides/herbicides), etc. Then in 2001 he had bacterial meningitis - nearly died - recovered - but there had to have been changes internally from the intense brain/spine fever. Then ultimately - one would think there need be some sort of difference/weakness in the immune system -or other of the myriad systems of the body for the PD shift to take hold. Just my thoughts about the one case I really know -

Antibiotics?

well, it's another chemical/s added to the mix - & with the meningitis came an intense dose of those - 😐 👍 . I still wonder if there is any tracking statistically of people who have had meningitis who end up with PD. - ?

They wipe out your micro biome which affects digestion, and manufacture of neurotransmitters. That might be the trigger for you. But of course with meningitis you have no choice or you would die so it is still the right thing to do.

Play the hand you are dealt...

@cleo16, As @hikoi and others with Parkinson’s will tell you, and as you most likely might be telling yourself, we might out of exasperation with our lives, ask ourselves, “why me?” The answer that we either give ourselves or tell each other, most likely is “why not you?” I have a better answer, “ Thankfully, this is the worst thing that has happened in my life so far “! Of course, we all have other medical issues that might be worse or may worsen the problem.

Look at life in the proper perspective. Life is not fair. Look at other people around you. Everyone has problems. Not every medical condition is visible. I have friends and family who live with chronic conditions that are not apparent or visible, but suffer immensely nevertheless. I have a friend who has severe lower back pain and despite a daily cocktail of medications, barely gets any relief.

His first comment to me when I complained about my Parkinson's diagnosis was, "at least you have medication that gives you temporary relief. I don’t have that. I would gladly trade places with you!"

The grass is always green on the other side as the old saying goes.

Cheer up and relax. Life is more than Parkinson’s.

RKM

cclemonade
cclemonade in reply to pdpatient

Thank you That helps

Truly

Good answer

gginto
gginto in reply to pdpatient

"Life is more than Parkinson’s." You hit the nail squarely on the head!

Toxic exposure in my case, set forth here:

Parkinson's and Pesticides

tinyurl.com/y8tckmx4

"Household insect foggers (“flea bombs”) often contain an insecticide (permethrin) that has been associated with tripling the risk of Parkinson’s."

cclemonade
cclemonade in reply to park_bear

Wow Park Bear, my parents used to use that. Omg....my Dad has it and now I do.

park_bear
park_bear in reply to cclemonade

OMG is right. I think we have got a permethrin induced PD epidemic. I do what I can to get the word out but much more needs to be done.

LAJ12345
LAJ12345 in reply to park_bear

Cats and dogs with flea treatment every month. Bora bombs. Treatment of carpet for carpet moth...

Hadn't thought of that. We used them a few times when we lived in South Africa. But then how come hubby got Parkinson's and I haven't (yet)?

Ah, just read the full article Park Bear and now have the answer to my question.......it's genetic. Thanks for posting - it's an interesting read

Genetics makes one predisposed to it. I don’t have it but my moms lewey bodies w dementia started out as Parkinsons. I wish she had Parkinson’s a. I see a neurologist once a year for monitoring because I am generically predisposed

Genetics adds to the vulnerability.

Someone I know who was exposed only ended up with restless leg syndrome. I think of that as a junior cousin to PD since it is responsive to PD meds and often accompanies PD.

Pegcity
Pegcity in reply to park_bear

We used the stuff on our pets. Now my husband has it.

Trixiedee
Trixiedee in reply to park_bear

My mother locked me in a tent that she had sprayed heavily with insecticide to kill mosquitoes when I was a kid. I think that did my nervous system no good.

We got Parkinson's because otherwise we would have been so awesome that it wouldn't be fair to the rest of the world , so the Lord levelled the playing field for them.

I love that statement and that’s what I’m going to believe. Thank you. 🥰 Karen

Love this. How positive. Thanks

😂🎸😘

God gives us all a temptation to someone through illness, to someone through taking people dear to him before, through success and failure, to someone through wealth and poverty, through faith and unbelief through all this man is tempted.

Better me than someone that can’t handle it.

At first my doctor told me he thought i have ALS bc I have “fasciculations.” I was relieved when my PD symptoms increased making it more apparent it is PD. Then I found out a childhood friends breast cancer is back and it’s stage 4.

Then a high school friend died at 44.

I have PD and I am still upset, very upset to be honest. I’ve got a long ways to go to learn to cope well. I’m only 45 and I’m mad and sad.

But I am so thankful I do not have ALS, stage for cancer, or am suddenly dead.

So, let’s count our blessings.

I do think that at some point, stem cells will refill my dopamine tank. Less invasive DBS will reduce my symptoms. And before any of that, a few random at least minorly helpful or restorative therapies will emerge.

We are all going to be okay.

I firmly believe it starts with long term stress, bouts of depression over the long term. I am now 80 having been diagnosed in 2015. I was still OK until 2018 when all went to hell. The doctor indicated that he never saw a person go down hill so fast. Overall family issues are constant.

There is no answer to that question. Those who do npt have Pd could well ask, "Why not me?' I don't believe in asking questions like that, I would rather get on and do something about it. In my opinion, there is something we can all do about it, that is if we are prepared to put in the effort. My Pd symptoms started in 1963 but was only diagnosed in 1992, By 2002, my condition had improved so much that I was able to come off my Pd medication and have lived a normal life since then. I am not cured, I have to continue to fast walking, because if I don't I start to get worse again.

If you would like to see my videos and learn more about it, then email me at johnpepper@telkomsa.net and I will send you everything FREE OF CHARGE!

parkylot
parkylot in reply to JohnPepper

Walked 4 miles yesterday. Started out dragging left foot but was rewarded to end strong. On the spin bike I have no way of isolating my left leg, walking requires concentrated effort with each leg.

JohnPepper
JohnPepper in reply to parkylot

I am pleased to hear you are trying the walking, but to start doing 4 miles is too ambitious. You could not possibly do that at your fastest possible speed, that is impossible, unless you are super fit. If you want to know exactly how to go about doing it properly I will send you my videos and a whole lot of information, free of charge. Just email me at johnpepper@telkomsa.net and I will send it all to you.

I asked the same question (why me ) but get one thing straight it’s not a death sentence so be very positive and make sure you don’t let it get you down ,many a famous person has thrown in the towel and done the unthinkable ,just make sure you have someone to talk to when things get on top of you .......Parkinson’s educator ( feel free to contact me )

pdpatient
pdpatient in reply to mckchart

@mckchart, excellently put and brought back old memories. I was writing a response to your comment and realized that the topic needs more discussion among PwP's.

See my new post, inspired by your comment.

RKM.

Godiv
Godiv in reply to mckchart

That’s a very kind offer. Thank you!

Why any of us

We have Parkinson's but whether it has us or not is totally up to us, don't let it define you your more than Parkinson's.

134A
134A in reply to Boomercd

It’s all of the above. I was told by a spiritual healer that my PD is hereditary and brought on by chemical exposure. I grew up on a farm where pesticides were used freely (before it was known that they were harmful ). Looking back I can see indications that I had the disease since my late teens-when I began to experience gut issues . I believe that there is also a connection to childhood trauma and even inter generational trauma.The why is not as important as the how we deal with it. We can sit down and give in. Or keep fighting!

There is hope. You can find it.

bassofspades
bassofspades in reply to 134A

Im on to that childhood trauma theory. Big time.

Xenos
Xenos in reply to bassofspades

... and proven on mice : Long-term stress causes visible harm on their brains ( visible.. at autopsy).

134A
134A in reply to bassofspades

Family Constellation Therapy

Google this. I tried to paste the link but couldn’t get it to work.

It’s a way to uncover and address past traumas as a healing method.

Godiv
Godiv in reply to 134A

I grew up on a farm also. And there was some childhood trauma thrown in. But you’re right. It’s important how we handle it now and important that we support each other.

jennrich
jennrich in reply to 134A

Niki Gratrix for childhood trauma---she's great!

134A
134A in reply to jennrich

Does she have a website?

jennrich
jennrich in reply to 134A

nikigratrix.com/

One has to learn to work with having a chronic health condition. That takes awhile, sometimes. I have found that feeling sorry for myself, and feeling ‘Why Me’, can be counterproductive! So, dwelling on what I have, or have lost, physically wise, is not helpful, when trying to cope with having PD, and Cerebellar Ataxia. It’s best if I concentrate on what I am able to do, not what I have lost. Helping others, in different ways, helps me, to cope better! Trying to stay positive, is helpful, also.

134A
134A in reply to ddmagee1

👍👍

I know the feeling- Big time..... But- learn as much as you can about it, speak with people.. exercise, find the meds that work for you.. stay positive, eat well, look after yourself, meditate.. live in the moment...I'm sure It will be tough, but... we're in charge of our lives- We have a lot of potential. Yes we've been handed a shitty hand- that's reality. How do we make it better?

Bonjour, pour mon cas je pense que ces sont des traumas de l'enfance qui nous obligent à vivre dans l'anxiété à long terme et cela explose suite à des chocs émotionnels importants. alors le corps pour éviter de s'éteindre développe une stratégie de survie qui est le PD

Great question. Husband and his mom both have PD, so I can't ignore some kind of genetic link in some cases, but, could also be environmental toxins. A neurologist I found on line said that all disease is from too much or too little of something. Our neuros just seem to treat symptoms.

stiltzski
stiltzski in reply to TheGimba

I’m in same boat: husband and his mother both diagnosed with Parkinson’s. Spare a thought for the carers here though in this ‘why me?’ debate They did not sign up for this either and their lives have also been changed totally by their partner’s diagnosis . A little altruism always helps rather than naval gazing.. I have had fibromyalgia for 15 years, severe asthma & a thyroid problem.. I have two pairs of bulging discs in my back, which scream out every time I have to heave my other half out of bed. I have been a carer before, for my mother, who had a stroke when I was 14. I feel hard done by too as I am sure many carers of PWP out there do.

Godiv
Godiv in reply to stiltzski

I am so sorry about your mom. That must’ve been so difficult, especially at the age when you were trying to probably pull away and be independent. And in your life today, this is not what you signed up for either. I have done caretaking and still do to a much lesser extent and it is exhausting. I’m sure I know where near did what you do, but I have just seen a glimpse of it and it was really tough.

I would like to think that most PWP’s are grateful to their caretakers, And are able to empathize with the caretakers’ pain, both emotional and physical. But unless you’ve been a caretaker you never really can know how it is. Anyway, I just wanted to sympathize with you and I hope you can maybe get a little piece of time to yourself occasionally so you can rest. But I know it’s very difficult to get help in these situations. I’m so sorry.

I’ve certainly asked that question many times. I was diagnosed when my son turned 10 and I still had a lot of things I wanted to do in life. But there is one thing I’ve learned is that I look at life a lot differently now and my priorities have changed for the better. It’s not just all about me. My focus has turned to others. I also learned that there is a God that loves us very much and provides comfort when I can’t see past this disease. It is definitely a game changer but you have the ability to still make life great. God Bless. I’m here anytime you want to talk.

I wonder if one is a Parkinson’s type of personality or an Alzheimer’s type. A bit like the old type a or b for personality types cancer. This is entirely made up and has no scientific basis. Just an idea. Feel free to shoot it down🤣. What type are you?

A Parkinson’s type is conscientious, methodical, often technical , worries about things, plans, knows where everything is, goes over things/lists in their minds. Tends to get absorbed in activities and hobbies possibly to an excessive level. Introverted

An Alzheimer’s type is less organised, more go with the flow, more spontaneous, doesn't cogitate over what might happen or run through continuous lists in their heads, misplaces things and forgets to do things, easily distracted. Artist, flamboyant extraverted.

Not everyone will develop one or the other if brain stays healthy. Environmental things, diet and exercise, traumatic incidents may trigger the condition. Some may never develop the condition if eg cancer or heart disease develop first. If brain is damaged or starts to deteriorate these traits mean the person starts to develop either PD or Alzheimer’s.

What do you think?

134A
134A in reply to LAJ12345

Sounds as sensible as anything that the medical “Establishment “ has come up with 😀

Xenos
Xenos in reply to LAJ12345

Your PD type is my portrait... and I have PD...