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#1 etravers

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Posted 11 July 2013 - 02:45 PM


I hope I am posting this in the right place. My boyfriend was recently diagnosed with Parkinson's Disease. He is 37. Right now he experiences tremors and slowness in his left side. Mostly his arm. I am doing the best I can to be as supportive as I can however I don't know much about the disease and honestly I haven't done much research possibly out of fear of what I will find. I have 3 children, 1 9 year old and 2 twin 18 month old. Can someone help me in the direction where I need to go to better understand what he is going through and what to expect and most importantly how I can best help him! I am sure this is hard on him but he is very negative about his future with the disease and I just don't see why. Maybe that sounds silly I know what the disease does to a person but I don't feel it is something to be negative about for our future. Am I being overly optimistic. Any help or anyone who can point me in the right direction of where to start would be greatly appreciated.

Thank you,


I had posted this in the early onset portion but then saw the caregivers section.


#2 coacht

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Posted 11 July 2013 - 09:31 PM

Etrravers,
Look for the Young Onset Parinson's disease book. I think there is one on this site and if not look at the APDA website. They have a young onset site. the thing to remember about Parkinson's Disease is that and I quote from a wise friend, "If you have seen one person with Parkinson's Disease, you have seen one person with Parkinson's Disease." It is so variable in how each person is affected, physically, emotionally, and cognitively. No one can predict how each person will progress or how severe it will get. The young onset people tend to progess more slowly and don't have some of the physical problems that older people get. The real kicker is some of the drugs will do nasty things and you don't know if it is the disease, the person, or the drugs. The sinemet seems to have the fewest problems. A Movement Disease Specialist would be a good person for him to see.

Keep your head up,

Coach T

#3 Golden01

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Posted 12 July 2013 - 07:57 AM

Coach T's words are wise. The NPF website is full of information. The books that I have found most helpful are "Navigating Life with Parkinson Disease" and the manual from the Davis Phinney Foundation. "Every Victory Counts". That said, one of the things that I've learned is that while my husband and I are on the same PD path, especially in the beginning, one of us was often ahead or behind the other and it is important to give each other space and time to deal with the reality of this disease on our own schedule. We always eventually catch up with each other again. The one piece of advice that I have posted in these forums before is to "run, not walk" to the best Movement Disorder Specialist (MDS) you can find. Travel if you must. Try more than one doctor, if you must. His MDS will be the one that helps you navigate the medicines, other therapies, etc., and because as our doctor as told us, "Usually in PD nothing happens fast", the MDS is someone you will see over a long time so it needs to be someone you feel comfortable with and that you trust to give top-notch care. For my husband, PD-specific exercise has been life-changing. One last thing that I think is sometimes underestimated, the facial masking in PD sometimes makes it hard to read emotions as well as before and can hinder communications. Always ask, don't assume how the person with PD is responding or feeling. Good luck to you and your family. Your caring attitude will go a long ways.

#4 Golden01

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Posted 12 July 2013 - 08:02 AM

Meant to put the link to the Phinney Foundation in my message. Here it is: http://www.davisphinneyfoundation.org/ If they have a "Victory Summit" near you be sure to go. If your boyfriend isn't ready, go alone and share just selected info with him. That's how we found Becky Farley, the amazing physical therapist from Tucson for my husband. Since then, we've gone to a Victory Summit together and it was an amazing day.




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