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    
New normal

Your most valuable advice to a newbie ?

Recommended Posts

New normal    1,273

 

CG's

 

As many of you have seen on other threads, my DH has been dx'd with PD.

 

What advice have your received since the beginning that has been the most valuable to you ?

 

NN

Share this post


Link to post
Share on other sites
miracleseeker    668

1. Your needs do not come first anymore.

 

2.  Do more and talk less.  People who say they will do X & Y usually end up doing nothing.  Get going.

 

3.  If you start then don't look back. Regrets are a waste of time.

 

Welcome to our world.  Take care.

  • Like 3

Share this post


Link to post
Share on other sites
Quietstill    450

Most valuable advice I've been given?  Take it day by day.  Remember to breathe. 

What I've learned?  Try to find the humor.  It won't change, you will be alone, but you can do it one day at a time.

 

Pretty bleak, but what can you do. 

  • Like 2

Share this post


Link to post
Share on other sites
PatriotM    797

Let's keep a little perspective.  NN - you were diagnosed almost 3 years ago and in another post, you said that with Sinemet you are basically normal.  Therefore, you don't need a caregiver and you don't need to be a caregiver for your DH either (at least from a PD perspective).

 

I also was diagnosed in 2013 and my wife is my wife, not my caregiver.  That may come years down the road, but it definitely isn't now.  I don't want to be treated like I'm helpless until I am.

 

When your PD patient (or you) can no longer care for themselves, then they need a caregiver.  Before that, they need a spouse, daughter, son, friend, etc.  Simply because I was diagnosed with PD (or even have challenges with PD) doesn't mean that I need a caregiver.

Edited by PatriotM
  • Like 5

Share this post


Link to post
Share on other sites
miracleseeker    668

Good observation Patriot.  I hope this will not change the topic but when is someone considered a Caregiver?   Recently on this Parkinson Foundation webpage they did a story on a woman whose husband has PD but... he was in the very early stage of the disease and did everything for himself.  I had to scratch my head while reading it because why would anyone call her a caregiver when there is no care needed?  Does a person get the label of caregiver  just because a loved one gets a disease?   Or how about the rich and famous with a sick spouse and have lots of hired help yet the media calls them caregivers?    I'm not trying to sound like an authority on what it takes to be one but I do have to question when someone actually is one.    I hope this makes sense.  Makes you wonder right?   Sorry NN for side tracking this for a moment. 

  • Like 2

Share this post


Link to post
Share on other sites
miracleseeker    668

NN - If you had to get your DH on the Harley then is it safe for him to ride it at all?

 

I think you are more of a life partner with your DH more so than a caregiver because you both are active in doing things for each other. You are a team.

Share this post


Link to post
Share on other sites
christie    1,049

My  most valuable advice to a newbie:

 

-Be patient. Don't let depression and dark thoughts get you down. It DOES get  better. Don't ask me why. I don't know...But I've seen it happening..

 

-Don't waste valuable time in self-pity and "why-me" thoughts. Remember, the same day you heard you had Parkinson's,  other people heard they had incurable cancer, ALS or Alzheimer's. These people would give anything to be in your place. And be thankful you can still hope for decades of productive life. It's no small thing.

 

-Don't make PD the new center of your life. you are still the same. Live your life as you did before you were diagnosed. Make all necessary adaptations only when and if they are necessary. Don't change your life long plans because of PD. Not until you have to, at least.  

 

-Start exercising as soon as possible-if you were a couch potato before your diagnosis this is the best time to change your life style...Exercise can work wonders with depression, cognitive clarity, while some patients may also notice a significant  improvement of PD symptoms.

 

-Don't be afraid of meds. Don't be afraid of dyskinesias. Don't be afraid of anything. Start taking levodopa when your quality of life starts to suffer (you will know it when that time comes).

 

-Live your life as fully as you can. But don't overdo it! Get plenty of rest and good quality sleep. Learn to listen carefully to your body. Especially when it tells you to stop  or slow down.

 

-Find a good MDS. Get informed about your treatment options. Knowledge is power.

 

-Get in touch with other PD patients. Share your worries and feelings with them. No one can understand you better than a fellow parkie.

Edited by christie
  • Like 5

Share this post


Link to post
Share on other sites
christie    1,049

Thanks MM for clarifying! Looks like I misunderstood the thread's topic...Thought it was about newly diagnosed patients, while it is about newbies caregivers...Didn't even notice the thread was posted in the caregiver's forum...

 

Sorry.... :mrgreen:

  • Like 1

Share this post


Link to post
Share on other sites
Librarian    13

Hey NN, you may never see this reply since it comes so long after your post but... I appreciate you asking this question. I too have a loved one who just got diagnosed. He doesn't need physical care. And he doesn't have dementia. But he does need some care in learning what this is and what he needs to do and making and going to appointments and so on.

 

So that means, by folks here, that I don't count as a caregiver. And they are right. I count, really really count, as a lover and partner to my husband. A helpmeet as he navigates new waters. But that doesn't mean the advice from these truly miraculous and still human CGs here isn't something I can't benefit from. In fact, part of my coping mechanism as I adjust to this diagnosis is to scour this discussion forum for the insights and humanity I find.

 

I love what Christie wrote. And I learned from the comments reminding us to stay partners when we are partners and become CGs only if and when it becomes necessary.

 

While I will continue to glean, as you put it, insights as I read other posts I am grateful to those who actually do give advice when asked, as you asked in your original post. So Thanks!

  • Like 3

Share this post


Link to post
Share on other sites
Quietstill    450

Welcome Librarian,

Of course you are a CG, as is your husband, otherwise I suspect you would not have married each other!  Artificial distinctions are just stupid.  We all live on the same earth, and if you post you obviously have been touched by some aspect of PD.  My advice would be information gathering.  I have found the PDF site very informative.  They have a series of web seminars that go back for years, with some pretty nifty topics.  Everything from building a medical team to dopamine absorption.  It's a great resource for understanding the realities of PD.  As you are just new to the PD, look after yourself.  Most people with PD get depressed for 3 months or so (very reasonable, it's a bummer).  What isn't talked about much is their spouse often gets really depressed 6 months after Dx.  Again perfectly reasonable, as the first flurry of trying to 'fix' things for a loved one by gathering knowledge, researching therapies,  gives way to realizing that this is a long haul for both of you, with nothing to be done but staying positive.

 

So shout out whenever you want, and welcome again.

  • Like 2

Share this post


Link to post
Share on other sites
Pathfinder    65

My husband has possible Parkinsonism and mental deficits and we are new to this since early May of this year. Our OMT doc has a phrase that I accept every day and it is *this is my new normal*. Today may be his best day ever or mine in dealing with his issues, so that helps me a lot. It reminds me that it could be a lot worse, and even that it is a great day in so many other ways. I am finding the phrase helpful as the lines blur sometimes as to what hubby understands or can comprehend and just have to go with the flow. Best wishes to everyone.

Share this post


Link to post
Share on other sites
Quietstill    450

Welcome Pathfinder!

I hope you find the site useful.  It helps to have people to talk to and ask questions.  It sounds like you got a lot dumped on you all of a sudden.  I dislike accepting the phrase 'the new normal' or 'living well with Parkinson's."  While the first may be true, the second is rather ironic.  I'd rather live well with millions of dollars, thank you.  I'd be happy with that as the 'new normal'.    Living well with cognitive deficeits (as it is so delicately put) is just too hard sometimes, and some days I tire of always presenting an upbeat facade. 

 

What is an OMT?

  • Like 1

Share this post


Link to post
Share on other sites
Pathfinder    65

Welcome Pathfinder!

I hope you find the site useful.  It helps to have people to talk to and ask questions.  It sounds like you got a lot dumped on you all of a sudden.  I dislike accepting the phrase 'the new normal' or 'living well with Parkinson's."  While the first may be true, the second is rather ironic.  I'd rather live well with millions of dollars, thank you.  I'd be happy with that as the 'new normal'.    Living well with cognitive deficeits (as it is so delicately put) is just too hard sometimes, and some days I tire of always presenting an upbeat facade. 

 

What is an OMT?

 

Thank you for the warm welcome! I have indeed found the site to be a wealth of information, very helpful! 

 

OMT is Osteopathic manipulative treatment. My husband fell in March, diagnosed with post concussion syndrome, and that was the start of all our medical issues. He had a brief hospital stay for that. He also has Gastoparesis and type 2 diabetes. The Gastro pain was so bad he was hospitalized for four days, and during that stay they started the OMT therapy. It helped him so much, after treatment he could sleep so well. We continued to see a new doc for OMT and have since his dismissal. They are manipulating the Vegas nerve to allay his stomach pain and also his neck/head/shoulder area to heal from the blow to the back of his head when he fell. While in the hospital for the stomach pain the Parkinsonism symptoms came on suddenly along with short term memory problems. Talk about bewildered! But here we are and still no proper diagnosis, the Neurologist says it make take a year to properly diagnose him. We can wait.

Share this post


Link to post
Share on other sites
Quietstill    450

Your OMT sounds invaluable.  You mention a Neurologist, is he/she also a MDS (Movement Disorder Specialist)?  That is actually critical.  Parkinsonism reacts to different medications in strange ways.  A reg Neurologist doesn't have time to keep up on the interactions, while a MDS has extra training in the problem.  I mention this because your DH has other medical problems.  Some drugs that will help his other health problems may make PD much worse.  Go to NPF site's aware in care page

http://www.awareincare.org/

 

for further info on how important knowing the side effects of regular medicine on PD can be.  And chin up, the learning curve does get slower....

  • Like 1

Share this post


Link to post
Share on other sites
Pathfinder    65

How are MDS identified? The practice website says that their physicians treat MDS but I don't know if he is one or not. I will find out my next visit for sure. Thank for the info!

Share this post


Link to post
Share on other sites
Quietstill    450

Here is a link to this site's search for experts http://parkinson.org/find-help/resources-in-your-community

 

It's a pretty simple search engine that takes your zip code and displays PD doctors and experts within 100 miles of y9ou.  Worth it to take a look.  If you look at other sites that help with PD such as Parkinson's Disease Foundation (which I understand is merging with the NPF, or the Michael J. Fox site, they all stress the need to be seen by a Movement Disorder Specialist (MDS).  I would suggest that you locate one, and then talk to a medical professional you trust about the urgency of seeing the specialist. 

 

From my experience, we had no trouble getting in to see one.  But that is not usual.  I had been saying something was wrong for years, and forced a showdown with our PCP.  A nice guy, but he had missed the signs of distress, and dismissed my concerns for years.  When I had a blow up in his office, he got us an appointment in 2 weeks with a MDS who was retiring in one year.  That wonderful man spent 2 hours examining and talking to my DH, and passed us on to a younger MDS with yet another appointment within a month.  We see the new guy every 6 months.  This has been invaluable.  Talk to your OMT if possible, or a nurse if you know one that you can talk to.  PD is progressive, so the major goal is to slow the progression.  MDS people have tricks and therapies grounded in experience that can help, where Neurologists have a grounding in the theoretical.

  • Like 1

Share this post


Link to post
Share on other sites
Redbud    0

I spent about an hour yesterday reading the posts in this topic. I was so impressed with all of you: your responses were sensitive, compassionate, and intelligent. Equally important, they captured what I have been feeling as a "newbie."  I'm not sure when, or how often, I will post, but I wanted to say thank you. You lifted my heart, and I am so grateful.

 

Share this post


Link to post
Share on other sites
New normal    1,273

Welcome to the forum.  What i find great about the forum is diversity of thought and personal history. Plus, the patience and tolerance for independent thinking.

Hope you post often.  There is someone out there who relates to you and needs your perspective.  

NN

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


×