I have PD (Parkinson Disease)

Posted by Chris J @chrisj2491, Feb 13, 2015

I would like to introduce myself. My name is Chris and I just joined the group.
I have PD (Parkinson Disease) which of course is a neurological disorder.
If there’s one thing I’ve learned. ….it’s that everyone is “different.” It’s always good to listen and learn about others’ experiences.

@denie57

Hello! My first time on the site. I was recently diagnosed with Parkinson’s disease. I am 58 years old! Raised 4 children as a single parent and was looking forward to my golden years (travel, hobbies, networking, social etc,) Devastating blow that makes me hopeful that something good will come from this and then in the same hour feeling hopeless and vulnerable. Trying to figure this whole thing out.

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Yes the shower does help- but because I have serve Scoliosis of the lower spine ( from jumping out of Helicopters while in the Army for many years- when I retired just a few years ago- my spine bend almost over night- thank God my wife is a nurse and new what it was, it bend 24% to the left and the lower dic’ were gone or so deteriorated that I could barley walk. They tried all kinds of the things- shots, pain doctors -tried many things that did not work.. The pain never stops and stays about a 7-8 most of the time- I still go to spooners therapy to learn to work out and box the best I can and stay in some kind of shape. In recon we would jump out from 10-12 feet above the ground with a 60-80 lbs pack on, and when you hit the ground you would stick one leg in a rice pattie- Well enough of war stories, the body is worn out and you do the best you can Thanks for the tip- I will try that more often- have a good day and I hope a little fun along the way, HOOAH JJAMES

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@denie57

Hello! My first time on the site. I was recently diagnosed with Parkinson’s disease. I am 58 years old! Raised 4 children as a single parent and was looking forward to my golden years (travel, hobbies, networking, social etc,) Devastating blow that makes me hopeful that something good will come from this and then in the same hour feeling hopeless and vulnerable. Trying to figure this whole thing out.

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@johnjames You show incredible bravery as you did during the war and now in your own personal pain. God bless!

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@colleenyoung

Hi @denie57,
How has your week been?
In the 2 messages you’ve posted so far, I was immediately struck by your ability to take the bull by the horns, so to speak. Pick yourself up and put things into action to care for yourself. This despite dealing with lack of diagnosis, ongoing physical and mental symptoms, including depression.

Have you had any luck finding fitness classes and an in-person support group for people with early PD?

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Hi @denie57. Its been awhile since we have heard from you. How are you doing? Any changes in how you are feeling and adjusting to the PD? I suppose you are back to work, now. We would love to have an update from you. I hope that all is going well.

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@colleenyoung

Hi @denie57,
How has your week been?
In the 2 messages you’ve posted so far, I was immediately struck by your ability to take the bull by the horns, so to speak. Pick yourself up and put things into action to care for yourself. This despite dealing with lack of diagnosis, ongoing physical and mental symptoms, including depression.

Have you had any luck finding fitness classes and an in-person support group for people with early PD?

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Colleen thank you for your encouragement to stay with it- Allot pf folks have been pushing me to go to a live group with people, I just cant right now- to much in my mind that still is locked down- but your group seems to be something I look forward to too. God Bless you. JJames

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@colleenyoung

Welcome @trouble43443. I’m glad you got logged on!
I’ve moved your message to this discussion where others are talking about PD. I also want to invite @burgle to join you here.

I completely agree with you Trouble. It’s amazing to connect with others and “compare notes”. Good for you for getting your own support group started. With your help I think we can get a virtual one started here too. 🙂

When were you diagnosed with Parkinson’s? What kind of stuff are you hearing about protein?

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THere is a site that is written just for that purpose- Protein’s and a full list of food for Parkinson’s folks that will help- it’s on the cover of daily living with parkinson’s.

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@colleenyoung

Welcome to Connect @ggopher. We’ve got a small group here forming about PD. I’m glad you could join us and specifically for your offering useful information for @trouble43443 about taking Sinemet.

Gopher, when were you diagnosed with PD? I like how @denie57 and @trouble43443 have shared the activities (cats, computers and walking when possible) that they do to stay fit and sharp. What are your favorite activities?

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Does anyone with Parkinson’s have vision problems”? Mine has been going down hill ever since I was diagnosed/ JJames

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@colleenyoung

Welcome to Connect @ggopher. We’ve got a small group here forming about PD. I’m glad you could join us and specifically for your offering useful information for @trouble43443 about taking Sinemet.

Gopher, when were you diagnosed with PD? I like how @denie57 and @trouble43443 have shared the activities (cats, computers and walking when possible) that they do to stay fit and sharp. What are your favorite activities?

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@johnjames While you don’t mention specifically the type of vision problem you are having I can offer a few thoughts. Often PD can cause a problem with vision, sometimes double vision can result. I have known people through a PD support group who have prisms put in their eye glasses to help correct this problem. There are ophthalmologists who specialize in vision problems with people who have neurological diagnoses, you might consider seeing one of them. I hope this helps.

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@colleenyoung

Hi @denie57,
How has your week been?
In the 2 messages you’ve posted so far, I was immediately struck by your ability to take the bull by the horns, so to speak. Pick yourself up and put things into action to care for yourself. This despite dealing with lack of diagnosis, ongoing physical and mental symptoms, including depression.

Have you had any luck finding fitness classes and an in-person support group for people with early PD?

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@johnjames It is important to live within your comfort zone. When you feel ready to move on to a “live group” that will be good as well. I have learned a lot from meeting people who have PD through support groups. I’ve found myself inspired by the strength that I see in their attitude, so when you feel ready, I encourage you to give it a try. As always, best wishes and thanks for sharing your experiences!

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@colleenyoung

Hi @denie57,
How has your week been?
In the 2 messages you’ve posted so far, I was immediately struck by your ability to take the bull by the horns, so to speak. Pick yourself up and put things into action to care for yourself. This despite dealing with lack of diagnosis, ongoing physical and mental symptoms, including depression.

Have you had any luck finding fitness classes and an in-person support group for people with early PD?

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Thanks- I’m still thinking about- but I do like this way- in many ways for Coleen for making so personal-but not in ones face.

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@colleenyoung

Hi @denie57,
How has your week been?
In the 2 messages you’ve posted so far, I was immediately struck by your ability to take the bull by the horns, so to speak. Pick yourself up and put things into action to care for yourself. This despite dealing with lack of diagnosis, ongoing physical and mental symptoms, including depression.

Have you had any luck finding fitness classes and an in-person support group for people with early PD?

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@johnjames Keep yourself comfortable, that is what is important now!

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Hello @chrisj2491 @caryp43 @denie57 @johnjames @trouble4343 @tntredhead @aperob @hdruss @retairforceman @macbeth How are you all doing? Please reply and check in and let us know how everything is going for you. Have you been involved in any new treatments to deal with your PD symptoms? Any new reports from your doctors? I recently heard of a new therapy for Parkinson’s, Boxing Therapy. Has anyone else heard of it or tried it? Here is a website with some more information https://www.rocksteadyboxing.org/parkinsons-class/

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@hopeful33250

Not great. My husband is slowly declining. Things are getting more difficult. In spite of the VA doctors’ assurances of help, they feel more obstructionist than helpful. As I stated, I asked for a very mild sedative for my husband due to times when he gets into a zone and insists on engaging in activities that may be harmful to him, or times he is agitated. Instead, they have referred him to a psychiatrist, because they can’t or won’t prescribe what I have asked for (just a very mild sedative). This may turn out to be o.k., however, it is taking a ridiculous amount of time for him to get in. In the mean time, I really can’t get rid of everything that may be harmful – ladders, chainsaws, kitchen knives, etc…any number of items around the house that I may someday need to use. When you live in the country, and you occasionally need “stuff”, you can’t just get rid of everything that could cause a problem, that you may later need.

In addition to this, the neurologist was rather sure that a trip to the ER a couple of years ago was due to seizure, while I thought it was an extreme sleep apnea episode. The same doctor now thinks the most recent episode of the same symptoms (just over a month ago) was sleep apnea, while I thought it was a seizure. Each time, he had just been on medication, a possible side effect of which was seizure. Now, that doctor and the neurologist in the regular health system, are both saying the it is all due to sleep apnea, and that he MUST use his CPAP machine every night. His CPAP machine is cumbersome and uncomfortable. He has tried every apparatus available. He doesn’t like to wear it. Even when he tries to use it, at the beginning of the night, he usually only wears it for a while. He gets up several times a night to go to the bathroom. For years, I woke up every time he got up in the night. I no longer wake up – often until morning. The doctors do not seem to understand that I am unable to monitor his actions all night long. On top of all of this, I have begun to find evidence, on some mornings, that he has been active during the night, and I have had no idea. I find lights on that I had turned off before bed, found a magazine basket from the living room in the bedroom in the morning, he is sometimes wearing a different T-shirt in the morning than when we went to bed. I try to tell myself to wake up when he stirs, but have been unsuccessful lately – I am sleeping like I slept as a child – no drugs or alcohol to blame. What is really ticking me off, is that the doctors don’t seem to feel any sense of urgency about this, and seem to blame me for him not using his CPAP at night. They have informed me that it is very important for him to get restorative sleep at night. I have informed them that I am a 24/7/365 caretaker, and that it is also important for me to get restorative sleep at night. Grrrrr!

You know, I actually feel better for having gotten this off my chest. Thank you!

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@macbeth

@hopeful33250

Not great. My husband is slowly declining. Things are getting more difficult. In spite of the VA doctors’ assurances of help, they feel more obstructionist than helpful. As I stated, I asked for a very mild sedative for my husband due to times when he gets into a zone and insists on engaging in activities that may be harmful to him, or times he is agitated. Instead, they have referred him to a psychiatrist, because they can’t or won’t prescribe what I have asked for (just a very mild sedative). This may turn out to be o.k., however, it is taking a ridiculous amount of time for him to get in. In the mean time, I really can’t get rid of everything that may be harmful – ladders, chainsaws, kitchen knives, etc…any number of items around the house that I may someday need to use. When you live in the country, and you occasionally need “stuff”, you can’t just get rid of everything that could cause a problem, that you may later need.

In addition to this, the neurologist was rather sure that a trip to the ER a couple of years ago was due to seizure, while I thought it was an extreme sleep apnea episode. The same doctor now thinks the most recent episode of the same symptoms (just over a month ago) was sleep apnea, while I thought it was a seizure. Each time, he had just been on medication, a possible side effect of which was seizure. Now, that doctor and the neurologist in the regular health system, are both saying the it is all due to sleep apnea, and that he MUST use his CPAP machine every night. His CPAP machine is cumbersome and uncomfortable. He has tried every apparatus available. He doesn’t like to wear it. Even when he tries to use it, at the beginning of the night, he usually only wears it for a while. He gets up several times a night to go to the bathroom. For years, I woke up every time he got up in the night. I no longer wake up – often until morning. The doctors do not seem to understand that I am unable to monitor his actions all night long. On top of all of this, I have begun to find evidence, on some mornings, that he has been active during the night, and I have had no idea. I find lights on that I had turned off before bed, found a magazine basket from the living room in the bedroom in the morning, he is sometimes wearing a different T-shirt in the morning than when we went to bed. I try to tell myself to wake up when he stirs, but have been unsuccessful lately – I am sleeping like I slept as a child – no drugs or alcohol to blame. What is really ticking me off, is that the doctors don’t seem to feel any sense of urgency about this, and seem to blame me for him not using his CPAP at night. They have informed me that it is very important for him to get restorative sleep at night. I have informed them that I am a 24/7/365 caretaker, and that it is also important for me to get restorative sleep at night. Grrrrr!

You know, I actually feel better for having gotten this off my chest. Thank you!

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@macbeth Hello and thanks for checking in. I’m sure that it did feel good to vent a little! I’m sorry to hear that your husband is not getting the relief that he (and you) need. I’m glad to hear that you are sleeping well. I can hear your frustration with the medical system that isn’t responding in a timely matter. Does your husband have “active or vivid” dreams that might cause the extra moving around, etc.? It is important to take care of yourself and I’m glad that you are doing that. Keep in touch, we are all interested in knowing how you are dong.

Liked by macbeth

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@colleenyoung

Welcome to Connect @ggopher. We’ve got a small group here forming about PD. I’m glad you could join us and specifically for your offering useful information for @trouble43443 about taking Sinemet.

Gopher, when were you diagnosed with PD? I like how @denie57 and @trouble43443 have shared the activities (cats, computers and walking when possible) that they do to stay fit and sharp. What are your favorite activities?

Jump to this post

@johnjames Hi JJames! I hope you had a good Thanksgiving. In your last post you mentioned vision problems. Have you had any discussion with your doctor about that yet? How are you doing otherwise? I hope that all is going well for you.

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Hello @chrisj2491 @caryp43 @denie57 @johnjames @trouble4343 @tntredhead @aperob @hdruss @retairforceman @macbeth. I hope you all had a good Thanksgiving. How are you all doing? It has been awhile since anyone has posted. Perhaps this means that we are all adjusting and doing OK? If so, that is great. However, if you have any Parkinson’s concerns, let’s hear from you. Also, if something has helped you, like a medication change or physical exercise program, let us hear about that as well. We can learn from each other!

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