Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    

Recommended Posts

The Parkinson’s Mindset, Chris Hageseth MD

 

(These messages have been implanted into our deepest mind. It is our responsibility to do something about them.)

 

Oh My God . . . No! Not Parkinson’s. Please . . . Say it isn’t so.

What’s going to become of me?

I have known people who died from Parkinson’s. It was horrible.

My neurologist says it is incurable, progressive, irreversible, hopeless, and downhill.

The medicines help for a while—but only for a while.

Most medicines have so many terrible side effects.

I wish I didn’t have to take medicine.

I constantly watch for the next Parkinson’s symptom to appear.

I can’t exercise well enough.

I’m just too tired.

I can’t meditate. My mind never stops repeating my fears over and over.

I’m embarrassed at how I appear to others.

At times, I wish I could die not and get it over with.

 

 

Share this post


Link to post
Share on other sites
8 hours ago, chrishagesethmd said:

The Parkinson’s Mindset, Chris Hageseth MD

 

(These messages have been implanted into our deepest mind. It is our responsibility to do something about them.)

 

Oh My God . . . No! Not Parkinson’s. Please . . . Say it isn’t so.

What’s going to become of me?

I have known people who died from Parkinson’s. It was horrible.

My neurologist says it is incurable, progressive, irreversible, hopeless, and downhill.

The medicines help for a while—but only for a while.

Most medicines have so many terrible side effects.

I wish I didn’t have to take medicine.

I constantly watch for the next Parkinson’s symptom to appear.

I can’t exercise well enough.

I’m just too tired.

I can’t meditate. My mind never stops repeating my fears over and over.

I’m embarrassed at how I appear to others.

At times, I wish I could die not and get it over with.

 

 

Nope...not my mindset......your attitude is part of the battle that you control....I have PD nut it does not have me.

 

LAD

Edited by LAD
  • Like 2

Share this post


Link to post
Share on other sites

Like most urban myths and other tales from the dark side, there's usually some small nugget of truthiness inside most of these sayings. But generally, none of these statements will stand up to the light of day...interestingly these fears are not unique to PD, either.  I bet you could name a dozen medical problems that could have similar statements. 

I think, to the extent possible, I will just make the best of my situation. Even if all this was true, who wants to live wrapped in a bundle of fear...way too much work maintaining that posture. 

-S

  • Like 1
  • Thanks 1

Share this post


Link to post
Share on other sites

How a person lives their life after getting a really bad diagnosis is likely to be much of how they are remembered when they are gone. I got Dementia with Lewy Bodies, so I got dementia and all the parkinson stuff. I haven't killed myself because I don't care to die and I do want to enjoy whatever my situation is the best I can, and I want my family and friends who stick around to see that there is life after getting getting hit with a hardship. Sounds corny, but that is why I haven't killed myself yet. The parkinson stuff is a real kick in the butt, but the progressive dementia stuff is quite ruinous, but between the two things there is still some light to see the day. Cheers.

  • Like 4
  • Thanks 1

Share this post


Link to post
Share on other sites

PD is another one of life's challenges to be reckoned with.   I was almost relieved to be diagnosed with PD since there is a streak of Alzheimers cases in my family history.

Throw all your troubles in a pile with everyone else's then see what is in that pile and you might be grabbing yours back again.  Reading about the PD complexities of others on this forum is enough for me to be thankful for the cards I have been dealt.  Trying to show some compassion and support of others is important to me.  My biggest challenges lay ahead so here in my mid 60s, with most of my marbles and physical capabilities,  is still "prime time" to enjoy travel, family etc.  Preparing for the future is also a priority.  No time to waste.

In the list above I would start out with finding another neurologist........hopefully an MDS!  Using the internet and my care team to learn as much as I can about PD is a great defense for many bullets on the list.  PD is not my identifier or legacy.

  • Like 1

Share this post


Link to post
Share on other sites
23 hours ago, Dancing Bear said:

In the list above I would start out with finding another neurologist........hopefully an MDS!  Using the internet and my care team to learn as much as I can about PD is a great defense for many bullets on the list.  PD is not my identifier or legacy.

Agree. My first neuro, a vascular specialist, did not fully grasp PD. I spent 4 long years trying to deal with his treatment regimen before seeking an MDS. I still remember him telling me (in 2007) that I would be bed-ridden in ten years. And I probably would have if I had kept him as my doctor. A good neurologist can make a world of difference in dealing with the disease.

Share this post


Link to post
Share on other sites

 

When I posted the first Mindset list, it was the PD Mindset. The following is the mindset we must adopt in order for PD not to have its way with us. I welcome your comments. I will post almost daily with the positive message that we live with Parkinson’s, we don’t die of it.

 

The Parkinson’s Mindset, Chris Hageseth MD

 (These messages need to be implanted into our deepest mind. It is our responsibility to practice them every day..)

 I have Parkinson’s disease. I’m glad it’s not ALS or Alzheimer’s.

I choose to view it as a challenge, not a curse.

I will seek out those people who are doing well with PD and learn from them.

Neurologists see the people who are doing the worst with PD, so their opinions are jaded.

I will take no medicine before its time.

I will adopt every reasonable complementary and alternative medical approach first.

I believe in neuroplasticity and will engage my body-mind to make it work for me.

I will study and read . . . a lot. There is much to be learned about my Body-Mind.

I reject the phrase, I can’t.  I can, dammit, and I will.

I have a mind. I can learn to meditate. Meditation is not a competitive sport.

I will always stand erect. I refuse to let my head and shoulders slouch—ever.

Share this post


Link to post
Share on other sites

Yes this approach works.Yesterday I went for a short walk with my dog.Well I got down to the pond and decided to keep going.Through the big orchard,up the hill and over the top.On the way up I always use a little laughter therapy to keep me going,lol,Down through the cut corn fields and back home i,About a 3 mile walk.felt pretty good no fatigue ,tight muscles or jerking.Then i realized i had not taken any pills since the night before,Now that is pretty good for going on seven years of PD.

Have a nice day

john

Share this post


Link to post
Share on other sites
2 hours ago, chrishagesethmd said:

 

When I posted the first Mindset list, it was the PD Mindset. The following is the mindset we must adopt in order for PD not to have its way with us. I welcome your comments. I will post almost daily with the positive message that we live with Parkinson’s, we don’t die of it.

 

The Parkinson’s Mindset, Chris Hageseth MD

 (These messages need to be implanted into our deepest mind. It is our responsibility to practice them every day..)

 I have Parkinson’s disease. I’m glad it’s not ALS or Alzheimer’s.

I choose to view it as a challenge, not a curse.

I will seek out those people who are doing well with PD and learn from them.

Neurologists see the people who are doing the worst with PD, so their opinions are jaded.

I will take no medicine before its time.

I will adopt every reasonable complementary and alternative medical approach first.

I believe in neuroplasticity and will engage my body-mind to make it work for me.

I will study and read . . . a lot. There is much to be learned about my Body-Mind.

I reject the phrase, I can’t.  I can, dammit, and I will.

I have a mind. I can learn to meditate. Meditation is not a competitive sport.

I will always stand erect. I refuse to let my head and shoulders slouch—ever.

Yep!!! Love this!

 

LAD

  • Thanks 1

Share this post


Link to post
Share on other sites
On 11/13/2017 at 6:20 AM, BillBRNC said:

How a person lives their life after getting a really bad diagnosis is likely to be much of how they are remembered when they are gone. I got Dementia with Lewy Bodies, so I got dementia and all the parkinson stuff. I haven't killed myself because I don't care to die and I do want to enjoy whatever my situation is the best I can, and I want my family and friends who stick around to see that there is life after getting getting hit with a hardship. Sounds corny, but that is why I haven't killed myself yet. The parkinson stuff is a real kick in the butt, but the progressive dementia stuff is quite ruinous, but between the two things there is still some light to see the day. Cheers.

Your life wisdom is showing. Thanks.

Share this post


Link to post
Share on other sites
On 11/12/2017 at 8:59 PM, LAD said:

Nope...not my mindset......your attitude is part of the battle that you control....I have PD nut it does not have me.

 

LAD

Amen. We are members of the same choir.

Share this post


Link to post
Share on other sites
On 11/13/2017 at 6:57 AM, Dancing Bear said:

PD is another one of life's challenges to be reckoned with.   I was almost relieved to be diagnosed with PD since there is a streak of Alzheimers cases in my family history.

Throw all your troubles in a pile with everyone else's then see what is in that pile and you might be grabbing yours back again.  Reading about the PD complexities of others on this forum is enough for me to be thankful for the cards I have been dealt.  Trying to show some compassion and support of others is important to me.  My biggest challenges lay ahead so here in my mid 60s, with most of my marbles and physical capabilities,  is still "prime time" to enjoy travel, family etc.  Preparing for the future is also a priority.  No time to waste.

In the list above I would start out with finding another neurologist........hopefully an MDS!  Using the internet and my care team to learn as much as I can about PD is a great defense for many bullets on the list.  PD is not my identifier or legacy.

Fortunately I am doing so well. My neurologist retired and I see no need of one at this time.

Share this post


Link to post
Share on other sites
4 hours ago, johnny said:

Yes this approach works.Yesterday I went for a short walk with my dog.Well I got down to the pond and decided to keep going.Through the big orchard,up the hill and over the top.On the way up I always use a little laughter therapy to keep me going,lol,Down through the cut corn fields and back home i,About a 3 mile walk.felt pretty good no fatigue ,tight muscles or jerking.Then i realized i had not taken any pills since the night before,Now that is pretty good for going on seven years of PD.

Have a nice day

john

Way to go! You got it . . . the positive mindset.

Share this post


Link to post
Share on other sites

I honestly feel like the words of my dad, "Oh get up, i've had worse than that in my eyeball" coupled up with the "Soldier Up" mental conditioning of US Military service. Along with my grandpa always saying "Doctors bury their mistakes", (no offense intended). Helped me to go another five years after knowing something was not just right. My military training in the heavy equipment mechanic field taught me that little quirky issues will either work themselves out or get worse. 

Then the first doctor appointment came along with a couple of medicines taken with blind faith, which I will never do again. 

Then four months of every doctor saying ALS, to walking out of the Dallas VAMC with C/L on the day I was supposed to be confirmed with ALS and referred to the ALS CLINIC. 

My philosophy of the huge algorithms of life with PD management is.

No matter how good or bad today is it could be worse, and most likely a day will come when you will be glad today was not as bad as your best day will be. Life is what you make of it, you are in charge and regardless of what works for someone else, the thing that matters the most is what works for you. 

The choice is yours to make.

Edited by Gulfvet
  • Like 3

Share this post


Link to post
Share on other sites
On 11/14/2017 at 5:07 PM, Gulfvet said:

I honestly feel like the words of my dad, "Oh get up, i've had worse than that in my eyeball" coupled up with the "Soldier Up" mental conditioning of US Military service. Along with my grandpa always saying "Doctors bury their mistakes", (no offense intended). Helped me to go another five years after knowing something was not just right. My military training in the heavy equipment mechanic field taught me that little quirky issues will either work themselves out or get worse. 

Then the first doctor appointment came along with a couple of medicines taken with blind faith, which I will never do again. 

Then four months of every doctor saying ALS, to walking out of the Dallas VAMC with C/L on the day I was supposed to be confirmed with ALS and referred to the ALS CLINIC. 

My philosophy of the huge algorithms of life with PD management is.

No matter how good or bad today is it could be worse, and most likely a day will come when you will be glad today was not as bad as your best day will be. Life is what you make of it, you are in charge and regardless of what works for someone else, the thing that matters the most is what works for you. 

The choice is yours to make.

I bet 50% of PwPs (persons with Parkinson's) have been fed garbage as you have. I'm on a mission to 'drain the swamp' so to speak.

Please listen to a few  of my podcasts here:

 http://www.blogtalkradio.com/upbeat_parkinsons_talk_radio

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×