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Hello to all of you and best wishes for success in taming your PD beast!
I'm hoping some of you can help me support my two sons (15 & 20) since they are very worried about their father who was diagnosed with PD last fall. My kids tell me he has tremors and they don't think he's following doctors' orders re exercise, reducing stress and alcohol consumption. It seems he's been instructed to follow a low-tyramine diet. Unfortunately, they're not sure what meds he's taking. My 20 yr old son says my ex has daily headaches (he was always prone to headaches). My son expressed concerns about his father's thought process as well as his driving. As of now, it seems that PD hasn't impacted my ex's ability to run his successful business. Right now, I'm in the delicate position of trying to figure out just what would be best for my boys and not interfere with their relationship with their father. Neither one of them is interested in outside support. I've suggested to my 20 yr old son that he attend a doctor's appointment with his father but, I'm not sure he'll do that (nor my ex allow it). I've also suggested that they both talk to him about their concerns but it doesn't seem like they have faith in him telling them the truth. I suspect my ex is still adjusting to the fact that he has PD. While he was always opposed to taking meds in any form, I do believe he will fight PD to the best of his ability. Of course, both of my boys are worried about progression. I've tried to comfort them by letting them know I would support them in every way possible but that doesn't seem to help. I understand that stress can make symptoms worse. Is it known if a worsening of symptoms means the disease has progressed? Can anyone share anything with me that could better help me support my boys? Thanks to all who post! Posted on 07/10/12, 08:10 am |
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This has to be a scary for your boys. It sounds like you are doing the right things for them - listening to their concerns and researching for them. Here is a good resource to look at: http://www.parkinson.org/caregivers...
Sometimes just having information can help elivate their concerns. It's up to your husband to do the right things for his help, your boys don't really have any control over what he does except to offer encouragement and support to him and to let him know they love him. I am sorry they have to deal with this, its not easy for anyone to watch their love ones have a diseasse, let alone young folks who are just learning to navigate their own lives. I wish you and them and their father well. 
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Thats a tough one. This has to be tough on your sons seeing their father in this state of being. I think acceptance is the key, at least it was for me. I have two son's. But I told them I accepted the fact of parkinson's and I would do what ever I had to. They know I'm a fighter and wouldn't give in to a disease. Knowledge is power. I exercise daily and do Tai Chi. I went from a walker to using a cane. After Tai Chi or exercising (push-ups, dumbell curls, punching a speedbag (boxing) I feel great . I believe it has to do with deep breathing and gettting oxygen into your brain and muscels. Somehow you have to get your ex to accept that he has it. Which isn't always easy. My son's are my world and they are 33 & 35. I try to set an xeample for them so when they are older and mayybe have to fight a disease, They seen me fight and defeat cancer, and several bouts of kidney stones. My favorite quote is "Pain is Weakness leaving the Body". Good Luck to you and your boys.
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Thanks so much for your reply! Your understanding and support are greatly appreciated.
You are so very right that my boys are scared - especially my younger son. I agree, knowledge is power. My boys know that the acquisition and use of knowledge is what helped me maximize my health condition. It seems they think their father is doing the opposite and that upsets them . Yes, not being able to control certain things can cause a person to feel out-of-control. Unfortunately, it seems they've focused on the worst-case PD scenarios rather than the people who have done all they can to maximize life with PD. I shared with them an article I found about an astronaut with PD and was still able to go on a spacewalk to fix something on the Int'l Space Station. Reading people's stories on here has given me hope for my ex. I plan on expressing to my sons that I believe their father has what it takes to maximize his life while dealing with PD - that's all one can hope for, right? You have validated my thoughts and that's greatly appreciated. I'm doing the best I can and suspected that someone like you would be aware of good places to get information - thanks! Thanks for your kind wishes for us......I extend the same to you :)
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bcbid68
We must've been typing at the same time :) Thanks for sharing your story. I wish I had a more communicative relationship with my ex but, he's not interested in one. My 20 y/o son was basically flipping out this past weekend and my 15 y/o son was fighting back tears at the time so, I started thinking even more about possible ways to help my boys and thus, my post :) I believe my ex shared similar words with my boys as those you've shared about intent to do whatever it took to deal with PD. I know he also expressed concerns about being able to drive and also "not get as bad as Mohammed Ali". It seems that they don't think he's following doctors' orders and are very concerned about progression. It makes sense that exercise would benefit a PD patient. I know my ex had finally started an exercise regimen before PD but, my boys don't think he's still exercising - this is one of the things that concern them. I'm trying to convince my sons to talk with their father and share their concerns but this doesn't seem likely (sigh). As we all know, one can do just so much. I commend you for trying to set such an excellent example for your sons. And, so sorry about all you've endured. Thanks again for good wishes - I extend the same to you! appreciated!
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It is usual to go through fear, anxiety and denial in the face of getting a disease such as this one. Father and sons should get as much knowledge as possible, and keep lines of communication open between themselves. Sometimes one needs to do a bit of Dr Shopping until one finds practitioners in whom one has confidence.
Attention to general health and well being should remain important as the body needs to be functioning at it's best, to be able to fight the disease (As with any other) Good attitude helps a great deal too. In my experience, sometimes a bit of therapy is needed to help patient and family members come to terms with illness - one is mourning the loss of perfect health, after all. Then usually, one learns to accept and to live with and around the condition - that is first prize!
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Not much you can do to help your ex if he does not want to communicate with you. Good thing your boys are older and will be able to navigate the web.
I agree that the parkinson.org website is a really good place to start---there is alot of info on that and easy to understand. They will adjust better once they understand the whole picture. It really is up to your husband now to see that they understand better what he is going through. Perhaps encourage them to communicate their feelings with their dad. Best wishes,
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Thanks barbarame and bluesapphire!!!
You both have offered sound advice. I think that, at this point, it's fear of the unknown that is troubling my boys the most. Obviously, acquiring knowledge and understanding of PD should help in that regard. Without a doubt, communication is key and I will continue to encourage them to speak with their father. Reading your words has helped me feel like I'm doing all I can - I just didn't want to think I missed anything :)
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Being a father of two young adults and Dx's with pd this past December, I may be able to shed a little -- but just a little -- light.
At this stage, I am still trying to figure out what this pd thing is. The sensations and experiences are novel, nothing hurts, and the meds have not done much to change things. Earlier on, my wife and offspring were more disconcerted than I was about my flopping hand. Now they are more accepting. I think we all are. I have lived, traveled and worked in this world long enough to know there are people who carry much greater burdens. Compared with what they have to deal with every day, my pd is small potatoes. A half-dozen of my friends and acquaintances have pd (makes you wonder what's in the water, right?) and for the most part I would say their outlook is similar. And not just them. For over 20 years, my mother-in-law lived next door... then with us... and had pd. She was a great person, heroic (really). She defined herself by what she did and kept at it. PD was never more than a footnote in her life. Even as she became more confined by it, she was never defined by it. For your sons, I offer these two cents: Use pd first as a lens to learn something about what these kinds of afflictions are all about, and second, as a vehicle to learn what a meaningful life is all about. Keep in touch. Beekeeper
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Mr Bee - you are SO right!!!!! Take a bow - but don't fall LOL You are the best!
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Wow, beekeeper42!
Your perspective is wonderful and your advice quite easy to pass on. After reading your words,I am comforted in my thoughts about my ex that he will find his place with PD.. Knowing my ex as a person will help me share my comfort with my sons that he, too, will not be defined by PD And, how true it is that we often have to rise above life challenges to have a meaningful life. Thank you!!!
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