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Socialization and Parkinson's Disease

Posted by @hopeful33250, Dec 29, 2016

To: @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris Hi all, As you have all noticed I always mention the importance of support groups when we discuss the “isolating” effect of PD (or any other chronic illness). I’m sure that you must feel that I’m overusing this whole concept, especially for those who tend to be private people or for folks who have not socialized in a while. I saw an article on the internet about Socialization and Health and I wanted to share it with you. 

The Health Benefits of Socializing from Psychology Today

Take a look at it and let’s discuss.

 

REPLY

You are not over using this concept because we are “isolated” Impacts the medical issue.

@elizabethbryant

You are not over using this concept because we are “isolated” Impacts the medical issue.

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@elizabethbryant Thanks for your feedback!

@hopeful33250

I like the article. I agree with the article. I do not believe it addresses some of our issues:

First – The hesitancy of others to become involved with us, or let us into their lives, circle, etc., due to the very medical issues that isolate us.

Second – If you are the primary or only caretaker of another person, it is not always possible to get away. I realize that there are resources, but, for most of us, time off is limited and must be used for appointments, running errands, etc.

Macbeth

@macbeth

@hopeful33250

I like the article. I agree with the article. I do not believe it addresses some of our issues:

First – The hesitancy of others to become involved with us, or let us into their lives, circle, etc., due to the very medical issues that isolate us.

Second – If you are the primary or only caretaker of another person, it is not always possible to get away. I realize that there are resources, but, for most of us, time off is limited and must be used for appointments, running errands, etc.

Macbeth

Jump to this post

Thanks, @macbeth, You make some good points. Can anyone else add to this discussion?

Just found this article in another on-line site I subscribe to. Don’t know how to send just the citation, so I am copying it all and putting it at the bottom of my short statement. The article doesn’t speak directly to PD, but it is about friends and family leaving and also suggests some alternatives. It suggests a support group. trouble4343

“We may not look sick, but turn our bodies inside out and they would tell different stories,” Wade Sutherland.

Invisible Illness: When Others Can’t See Your Pain
Life with a chronic condition like fibromyalgia or chronic fatigue syndrome can be frustrating in many ways, including the fact that your physical pain isn’t visible from the outside. People living with invisible illnesses have to sometimes convince others of their symptoms.
By Wyatt Myers
People who break their arm, throw out their back, or experience another form of injury may be in rough shape, but others can see their injury and understand their limitations.
But for the millions of people who are living with arthritis, fibromyalgia, chronic fatigue syndrome, and other forms of pain that are “invisible illnesses,” explaining what’s wrong is another side effect of their condition. Not only do you have to put up with challenging, often painful, and sometimes debilitating conditions every day, but on top of that, you may have to face skepticism from people — friends, family, and co-workers, as well as strangers — who don’t understand what’s wrong with you.
The Challenges of Invisible Illnesses
This was certainly the case for Allison Bigman, a New Yorker who has lived with chronic fatigue syndrome for more than 15 years. Her symptoms were so overwhelming at first that she had trouble managing them. Lack of understanding of the pain she was going through meant that she had to quit her job. Then, she noticed that many of her friends stopped calling or stopping by. “The disease changes you, and many people just don’t understand it and can’t handle seeing you that way,” says Bigman.
The social isolation and challenges faced by Bigman are not unique among people with fibromyalgia, chronic fatigue syndrome, or similar health issues. These conditions can be difficult to prove, and workers’ compensation and personal injury cases can become “expert versus expert,” with no one winning. And people with invisible illnesses frequently get a lack of sympathy from family members and doctors alike.
Unfortunately, doubt is not the only uphill battle that people with “invisible illnesses” like fibromyalgia, chronic fatigue syndrome, and arthritis have to climb. Peter Bongiorno, ND, a naturopathic physician with InnerSource Health in New York City, says that they often have to fight simply to get access to handicap services or even help from their doctor. “Oftentimes doctors will recommend the patient visit a psychiatrist, their partners tell the patient to basically ‘learn to deal,’ and bosses and co-workers view the patient as a chronic complainer,” he says.
This lack of belief in the illness can affect people financially as well. “Some unscrupulous insurance companies use this medical confusion to avoid paying people the health and disability insurance benefits they paid for,” says Jacob Teitelbaum, MD, director of the Fibromyalgia and Fatigue Centers and author of Pain Free 1-2-3: A Proven Program for Eliminating Chronic Pain Now. “This can leave people impoverished as well as crippled.”
How to Help Others Understand Your Illness
There are a few steps you can take to turn doubters into believers when facing the challenges of invisible illnesses like fibromyalgia, chronic fatigue syndrome, arthritis, or other types of chronic pain.
Start with your doctor. The solution is quite simple, says Dr. Teitelbaum. “If you have to convince your physician you have a real disease, you are seeing the wrong physician. Holistic physicians or pain specialists belonging to the American Academy of Pain Management are more likely to be familiar with these conditions.”
Try talking to your co-workers and loved ones. Bigman had success in explaining what was wrong with her by having the people in her life read up on the medical literature about her condition.
Invite a loved one to attend a doctor’s appointment with you. “Sometimes, if they can hear it from a doctor that you are suffering from chronic fatigue syndrome, that will help them accept and start to understand what’s wrong with you,” she says.
Bigman’s attempts to make her family understand her chronic fatigue syndrome were successful. She now relies on the help of many friends and family members and is working closely with several doctors to manage her illness and recover from it.
Still, she adds that even if your loved ones begin to understand your invisible illness a little better, they can never completely relate to what you are going through. That’s why finding a support group of people with your same condition can be so helpful. Ask your doctor about support groups in your area or check online for more information.

@trouble4343

Just found this article in another on-line site I subscribe to. Don’t know how to send just the citation, so I am copying it all and putting it at the bottom of my short statement. The article doesn’t speak directly to PD, but it is about friends and family leaving and also suggests some alternatives. It suggests a support group. trouble4343

“We may not look sick, but turn our bodies inside out and they would tell different stories,” Wade Sutherland.

Invisible Illness: When Others Can’t See Your Pain
Life with a chronic condition like fibromyalgia or chronic fatigue syndrome can be frustrating in many ways, including the fact that your physical pain isn’t visible from the outside. People living with invisible illnesses have to sometimes convince others of their symptoms.
By Wyatt Myers
People who break their arm, throw out their back, or experience another form of injury may be in rough shape, but others can see their injury and understand their limitations.
But for the millions of people who are living with arthritis, fibromyalgia, chronic fatigue syndrome, and other forms of pain that are “invisible illnesses,” explaining what’s wrong is another side effect of their condition. Not only do you have to put up with challenging, often painful, and sometimes debilitating conditions every day, but on top of that, you may have to face skepticism from people — friends, family, and co-workers, as well as strangers — who don’t understand what’s wrong with you.
The Challenges of Invisible Illnesses
This was certainly the case for Allison Bigman, a New Yorker who has lived with chronic fatigue syndrome for more than 15 years. Her symptoms were so overwhelming at first that she had trouble managing them. Lack of understanding of the pain she was going through meant that she had to quit her job. Then, she noticed that many of her friends stopped calling or stopping by. “The disease changes you, and many people just don’t understand it and can’t handle seeing you that way,” says Bigman.
The social isolation and challenges faced by Bigman are not unique among people with fibromyalgia, chronic fatigue syndrome, or similar health issues. These conditions can be difficult to prove, and workers’ compensation and personal injury cases can become “expert versus expert,” with no one winning. And people with invisible illnesses frequently get a lack of sympathy from family members and doctors alike.
Unfortunately, doubt is not the only uphill battle that people with “invisible illnesses” like fibromyalgia, chronic fatigue syndrome, and arthritis have to climb. Peter Bongiorno, ND, a naturopathic physician with InnerSource Health in New York City, says that they often have to fight simply to get access to handicap services or even help from their doctor. “Oftentimes doctors will recommend the patient visit a psychiatrist, their partners tell the patient to basically ‘learn to deal,’ and bosses and co-workers view the patient as a chronic complainer,” he says.
This lack of belief in the illness can affect people financially as well. “Some unscrupulous insurance companies use this medical confusion to avoid paying people the health and disability insurance benefits they paid for,” says Jacob Teitelbaum, MD, director of the Fibromyalgia and Fatigue Centers and author of Pain Free 1-2-3: A Proven Program for Eliminating Chronic Pain Now. “This can leave people impoverished as well as crippled.”
How to Help Others Understand Your Illness
There are a few steps you can take to turn doubters into believers when facing the challenges of invisible illnesses like fibromyalgia, chronic fatigue syndrome, arthritis, or other types of chronic pain.
Start with your doctor. The solution is quite simple, says Dr. Teitelbaum. “If you have to convince your physician you have a real disease, you are seeing the wrong physician. Holistic physicians or pain specialists belonging to the American Academy of Pain Management are more likely to be familiar with these conditions.”
Try talking to your co-workers and loved ones. Bigman had success in explaining what was wrong with her by having the people in her life read up on the medical literature about her condition.
Invite a loved one to attend a doctor’s appointment with you. “Sometimes, if they can hear it from a doctor that you are suffering from chronic fatigue syndrome, that will help them accept and start to understand what’s wrong with you,” she says.
Bigman’s attempts to make her family understand her chronic fatigue syndrome were successful. She now relies on the help of many friends and family members and is working closely with several doctors to manage her illness and recover from it.
Still, she adds that even if your loved ones begin to understand your invisible illness a little better, they can never completely relate to what you are going through. That’s why finding a support group of people with your same condition can be so helpful. Ask your doctor about support groups in your area or check online for more information.

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Thanks Trouble4343.
Here’s the original post from Everyday Health.
http://www.everydayhealth.com/pain-management/invisible-illness-when-others-cant-see-your-pain.aspx

@macbeth

@hopeful33250

I like the article. I agree with the article. I do not believe it addresses some of our issues:

First – The hesitancy of others to become involved with us, or let us into their lives, circle, etc., due to the very medical issues that isolate us.

Second – If you are the primary or only caretaker of another person, it is not always possible to get away. I realize that there are resources, but, for most of us, time off is limited and must be used for appointments, running errands, etc.

Macbeth

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Yes time off is ver limited. Example; while caring for my mother, the time before being there everyday and afterwards was taken up by my own appointments, appointments regarding my mother, her and my laundry, shopping for fresh fruits etc.. for mom and the list is endless.

About others taking the time or being involved, I spent over a dozen years lookung after my mother, in that time bot a single person stepped up to see if I needed a break. And since my mother passed away last January, no one has even bothered to see if I needed to take a break from mt pain of loss, of hurt, of greiving or of the actual pain of my illnesses. Hidden as they may be. I walk with a cane, due to car accidents and what I get is I don’t see anything wrobg with you besides you having to use a cane. They can’t see the actual pain I am in. Truth, they don’t want to.

This makes for a very lonely existance. OK I am going to be going to counselling for PD, but there are other problems as well. I will try to get involved with a support group. But all of these issues I have, have left me broke. There is the other side of having PD, Fibromalgia and chronic fatigue syndrome plus plus and plus. Being poor and broke is another stigma attached to my illnesses

I really dislike using my phone for this. I will use my computer from now on. It won’t be a quick response.

@macbeth

@hopeful33250

I like the article. I agree with the article. I do not believe it addresses some of our issues:

First – The hesitancy of others to become involved with us, or let us into their lives, circle, etc., due to the very medical issues that isolate us.

Second – If you are the primary or only caretaker of another person, it is not always possible to get away. I realize that there are resources, but, for most of us, time off is limited and must be used for appointments, running errands, etc.

Macbeth

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Thanks for continuing to share your story, @knightkris, it gives us a better picture of what you are going through. I’m sure that many others are thinking the same thoughts that you have expressed. Would anyone else like to comment?

I do very much appreciate the needed information. The post is a valuable one which can assist both myself and others

@macbeth

@hopeful33250

I like the article. I agree with the article. I do not believe it addresses some of our issues:

First – The hesitancy of others to become involved with us, or let us into their lives, circle, etc., due to the very medical issues that isolate us.

Second – If you are the primary or only caretaker of another person, it is not always possible to get away. I realize that there are resources, but, for most of us, time off is limited and must be used for appointments, running errands, etc.

Macbeth

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I hear you, and your pain. Yes the lack of care shows how sick our society has become.

I recently saw a report on Parkinson’s patients and “shaking”. It shows patients with severe shaking and then riding a bicycle where the shaking completely stops. These appeared to be people in the 50s and 60s. Thought I would post this here in case there is some value for those with these severe affects from Parkinsons.

@meggotty

I recently saw a report on Parkinson’s patients and “shaking”. It shows patients with severe shaking and then riding a bicycle where the shaking completely stops. These appeared to be people in the 50s and 60s. Thought I would post this here in case there is some value for those with these severe affects from Parkinsons.

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@meggotty Yes, I have seen that as well. Colleen earlier posted a video of Michael J. Fox playing ice hockey and his shaking disappeared completely. There is something to activity that you enjoy being beneficial for PD symptoms. Did you mean to post a website? If so, it did not show up in your post. Teresa

@meggotty

I recently saw a report on Parkinson’s patients and “shaking”. It shows patients with severe shaking and then riding a bicycle where the shaking completely stops. These appeared to be people in the 50s and 60s. Thought I would post this here in case there is some value for those with these severe affects from Parkinsons.

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New to this site, do you know if any research has shown the part of the brain that can be stimulated by this activity to stop those shakes? I wonder if it’s also that part of the brain that stroke victims with severe speech impairment seem to be able to sing perfectly, words come so easy when this happens, same with prayers, All these phenomena seem to relate to memorizing by rote. Not sure if I’m making myself understood here, but would love to know if there’s a connection with all of this, PD as well as stroke victims with sever speech. thanks for your reply. Do not have a website, should I have posted in one?

@meggotty

I recently saw a report on Parkinson’s patients and “shaking”. It shows patients with severe shaking and then riding a bicycle where the shaking completely stops. These appeared to be people in the 50s and 60s. Thought I would post this here in case there is some value for those with these severe affects from Parkinsons.

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Welcome. I don’t know of any formal studies, but I am sure some of the group does. I do know I have a "normal" voice when I sing or do my really bad imitation of John Wayne or the like.

Steve  

@meggotty

I recently saw a report on Parkinson’s patients and “shaking”. It shows patients with severe shaking and then riding a bicycle where the shaking completely stops. These appeared to be people in the 50s and 60s. Thought I would post this here in case there is some value for those with these severe affects from Parkinsons.

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@meggotty I do not have any clinical knowledge to share with you about this either. Perhaps another member might be able to join in on this discussion. Teresa

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