I have PD (Parkinson Disease)

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/

@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!

@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.

@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.

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!

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

@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!

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

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.

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.