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.

@hopeful33250

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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I have brought may husband home from the Assisted Living facility and he is doing much better.  He is eating better and each of his caregivers exercise him during their shift.  His sense of humor is even returning a little.  I still can’t care for him on my own due to personal injuries but it’s so much easier having him at home.  Assisted living works for many – and he was in a great facility – but I would spend 8-10 hours per day there with him and sometimes even sleep on the couch in his room during the night. I hope your loved one is having a good cycle right now.  The Redhead

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@hopeful33250

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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@tntredhead I’m so glad to hear that your husband is home with you now. That is good news! Thanks for keeping in touch with us at Mayo Connect! Best wishes to you and your family for the upcoming holidays!

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Chris2191- I’m pretty new also Chris, and yes- what I have in my research is were all are difference ( in most areas) Many are the same-which helps us talk about them with each other. I was diagnosed with Agent Orange Parkinson’s about 2 1/2 years now . Agent Orange is the chemicals that was used during the Viet Nam War, The difference is( with agent orange in our blood- parkinson’s progress allot faster the Dr.’ tell us. I served in the Army almost 45 years and the last last 35 plus years as a Army Chaplain, Parkinson’s affects everyone and there is many difference stage- I research every day on M,J, Fox web site. One of the side affects I will share tonight is a very poor balance and writing skills, I have to re-write allot of stuff which can causes allot of anxiety, I think we need to tell our family members and children what happening, Even those to forget things from time to time, that doesn’t mean you are losing your ability to remember the past. This is a great group and you can ask anything you like-or ask the leader in private-which I have done before. I pray the best for you. J.james

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@johnjames

Chris2191- I’m pretty new also Chris, and yes- what I have in my research is were all are difference ( in most areas) Many are the same-which helps us talk about them with each other. I was diagnosed with Agent Orange Parkinson’s about 2 1/2 years now . Agent Orange is the chemicals that was used during the Viet Nam War, The difference is( with agent orange in our blood- parkinson’s progress allot faster the Dr.’ tell us. I served in the Army almost 45 years and the last last 35 plus years as a Army Chaplain, Parkinson’s affects everyone and there is many difference stage- I research every day on M,J, Fox web site. One of the side affects I will share tonight is a very poor balance and writing skills, I have to re-write allot of stuff which can causes allot of anxiety, I think we need to tell our family members and children what happening, Even those to forget things from time to time, that doesn’t mean you are losing your ability to remember the past. This is a great group and you can ask anything you like-or ask the leader in private-which I have done before. I pray the best for you. J.james

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Thanks @johnjames for your message to @chrisj2491. Yes, everyone is different when it comes to Parkinson’s. It is good to hear from you! You always add a good perspective to Parkinson’s because of your Agent Orange experience. I’ve learned a lot from you about this. I hope that you had your family had a good Thanksgiving. Keep in touch with Mayo Connect as you are able.

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Hello everyone! Happy to see all stories and comments. I have not been on the site in awhile. Managing my symptoms pretty well considering. I have a bit of anxiety and my confidence is suffering. I find myself telling people that I have PD because when I speak I have a bit of a slur. My PT-Speech tells me she doesn’t detect it–not that obvious. But, I feel so slow and not quick to react in conversation and to movement in general. Kind of confused and in a fog. I fight to stay motivated and excited. Its the holidays and I’m kind of wishing they would hurry up and go away. I can’t do what I used to be able to do for myself or my family and it is frustrating. I haven’t really adjusted to that. All I can do is get back and forth to work, come home and go to bed. By the weekend I’m so exhausted. I have a grandchild and another on the way and have no energy for her.

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Something that’s recently come to my attention again is that PD could be linked to environmental toxins. I was exposed to mold in the work place about the time I started having symptoms. Coincidence, maybe! I have the report from the re mediators and showed it to my primary. She wasn’t alarmed by the report nor thought the levels were high enough for me to be concerned. One of my co-workers still works in the area where the mold was found. It has since been remediated (hum!), she has serious lung issues still. Others work in the area, but don’t have issues at least not the appearance. I work in the same building a few doors down. But, I frequent the affected area and had my first symptoms in the building. I am sharing this because I was wondering if anyone thinks they may have been exposed to an environmental toxin that may have caused the onset of PD. I know that they are doing research in this area, but I have not seen anything conclusive. And, if I wanted to pursue I don’t even know how I would get started.

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Actually my husband’s PD is from Agent Orange in Viet Nam. I hope that if yours is caused by the mold in the work place, they find it out now instead of later.

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@denie57

Hello everyone! Happy to see all stories and comments. I have not been on the site in awhile. Managing my symptoms pretty well considering. I have a bit of anxiety and my confidence is suffering. I find myself telling people that I have PD because when I speak I have a bit of a slur. My PT-Speech tells me she doesn’t detect it–not that obvious. But, I feel so slow and not quick to react in conversation and to movement in general. Kind of confused and in a fog. I fight to stay motivated and excited. Its the holidays and I’m kind of wishing they would hurry up and go away. I can’t do what I used to be able to do for myself or my family and it is frustrating. I haven’t really adjusted to that. All I can do is get back and forth to work, come home and go to bed. By the weekend I’m so exhausted. I have a grandchild and another on the way and have no energy for her.

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@denies57 – I know this is easier said than done but don’t worry about the small stuff like decorating for the holidays, etc. Take that time and instead enjoy time with your grandchild. That is much more important than holiday decorations. I know that the inability to speak like normal can be devastating. My husband is going through this and I strive to make sure I understand him but sometimes it doesn’t work. As a wife/caregiver, I am tired scared and feel so neglected by our so called friends but I take one event at a time. I gave up taking one day at a time. We have been on this road for over ten years but he is mine and I will take care of him as long as possible. Give yourself a break and take care of the important things in your life! Good luck and many hugs coming your way.

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@tntredhead

Actually my husband’s PD is from Agent Orange in Viet Nam. I hope that if yours is caused by the mold in the work place, they find it out now instead of later.

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redhead- I was diagnosed with Agent Orange Parkinson’s 2 1/2 years ago- I see two Nero/ Dr/ The Chief of the Medical staff -reference Parkinson’s told because its Agent Orange is far more progressive and I already have found that to be true. I can’t believe how fast the side affects and the movement issues have taken it’s toll. God Bless you and I pray for peace and a pain free day. Chaplain(Col.) John South USA 1st Div. in Viet Nam Twice.

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@denie57

Hello everyone! Happy to see all stories and comments. I have not been on the site in awhile. Managing my symptoms pretty well considering. I have a bit of anxiety and my confidence is suffering. I find myself telling people that I have PD because when I speak I have a bit of a slur. My PT-Speech tells me she doesn’t detect it–not that obvious. But, I feel so slow and not quick to react in conversation and to movement in general. Kind of confused and in a fog. I fight to stay motivated and excited. Its the holidays and I’m kind of wishing they would hurry up and go away. I can’t do what I used to be able to do for myself or my family and it is frustrating. I haven’t really adjusted to that. All I can do is get back and forth to work, come home and go to bed. By the weekend I’m so exhausted. I have a grandchild and another on the way and have no energy for her.

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Hi @denie57 Yes, the holidays do bring about changes for us with PD. We can’t expect our bodies to be able to handle the same “load of busyness” that they use to. So give yourself a break and decide on what is really important to you. As we begin to prioritize based on realistic expectations, we feel less frustrated (and less exhausted). I understand about your speech problems and that is common. I notice it especially when I’m tired, so I keep my conversations short and meaningful. I realize that not everything on my mind, needs to be said! Practice reading out loud slowly and pausing, that has helped me to talk slowly and pause more.

Liked by macbeth

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@tntredhead

Actually my husband’s PD is from Agent Orange in Viet Nam. I hope that if yours is caused by the mold in the work place, they find it out now instead of later.

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Hi @johnjames, thanks for continuing the conversation about Agent Orange. I’m getting a clear picture of the rapid progression of your symptoms related to Agent Orange. There are probably a lot of PD patients with your experience. Keep the discussions about Agent Orange going!

Liked by macbeth

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@denie57

Hello everyone! Happy to see all stories and comments. I have not been on the site in awhile. Managing my symptoms pretty well considering. I have a bit of anxiety and my confidence is suffering. I find myself telling people that I have PD because when I speak I have a bit of a slur. My PT-Speech tells me she doesn’t detect it–not that obvious. But, I feel so slow and not quick to react in conversation and to movement in general. Kind of confused and in a fog. I fight to stay motivated and excited. Its the holidays and I’m kind of wishing they would hurry up and go away. I can’t do what I used to be able to do for myself or my family and it is frustrating. I haven’t really adjusted to that. All I can do is get back and forth to work, come home and go to bed. By the weekend I’m so exhausted. I have a grandchild and another on the way and have no energy for her.

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Hi @denie57, Teresa started a new discussion a while back dedicated to sharing ideas about speech and swallowing issues. When you have a moment, would you mind adding what has helped you here:
– Parkinson’s and Speech/Swallowing Problems http://mayocl.in/2goA14D

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@denie57

Hello everyone! Happy to see all stories and comments. I have not been on the site in awhile. Managing my symptoms pretty well considering. I have a bit of anxiety and my confidence is suffering. I find myself telling people that I have PD because when I speak I have a bit of a slur. My PT-Speech tells me she doesn’t detect it–not that obvious. But, I feel so slow and not quick to react in conversation and to movement in general. Kind of confused and in a fog. I fight to stay motivated and excited. Its the holidays and I’m kind of wishing they would hurry up and go away. I can’t do what I used to be able to do for myself or my family and it is frustrating. I haven’t really adjusted to that. All I can do is get back and forth to work, come home and go to bed. By the weekend I’m so exhausted. I have a grandchild and another on the way and have no energy for her.

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I’ve been tested twice and both came out the same. What seems to work for me is a large glass of ice water BEFORE I eat my meal. When the water isn’t available, I often have the problem of food sticking, excess spit and near throwing up. Take the water and it really helps!

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@denie57

Hello everyone! Happy to see all stories and comments. I have not been on the site in awhile. Managing my symptoms pretty well considering. I have a bit of anxiety and my confidence is suffering. I find myself telling people that I have PD because when I speak I have a bit of a slur. My PT-Speech tells me she doesn’t detect it–not that obvious. But, I feel so slow and not quick to react in conversation and to movement in general. Kind of confused and in a fog. I fight to stay motivated and excited. Its the holidays and I’m kind of wishing they would hurry up and go away. I can’t do what I used to be able to do for myself or my family and it is frustrating. I haven’t really adjusted to that. All I can do is get back and forth to work, come home and go to bed. By the weekend I’m so exhausted. I have a grandchild and another on the way and have no energy for her.

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Thanks, @trouble4343, that is a very helpful idea. I have never tried it, but I will in the near future.

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@denie57

Something that’s recently come to my attention again is that PD could be linked to environmental toxins. I was exposed to mold in the work place about the time I started having symptoms. Coincidence, maybe! I have the report from the re mediators and showed it to my primary. She wasn’t alarmed by the report nor thought the levels were high enough for me to be concerned. One of my co-workers still works in the area where the mold was found. It has since been remediated (hum!), she has serious lung issues still. Others work in the area, but don’t have issues at least not the appearance. I work in the same building a few doors down. But, I frequent the affected area and had my first symptoms in the building. I am sharing this because I was wondering if anyone thinks they may have been exposed to an environmental toxin that may have caused the onset of PD. I know that they are doing research in this area, but I have not seen anything conclusive. And, if I wanted to pursue I don’t even know how I would get started.

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@denie57 I was exposed to some environmental muck but it was 20 years before I had the PD symptoms (it was an underground liquid waste disposal field about five miles from where I lived at the time). There was an explosion there and it was shut down, but I often wonder if that exposure made a difference biologically to anyone else who lived in that area.

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