Has Anyone Else Dealt With Family Members That Are Constantly Offering Alternative Medical Advice, Functional Doc Referrals And Resources? | MyParkinsonsTe

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Has Anyone Else Dealt With Family Members That Are Constantly Offering Alternative Medical Advice, Functional Doc Referrals And Resources?
A MyParkinsonsTeam Member asked a question 💭

Hi all- My husband was diagnosed about 9 months ago. He has just recently told all of his family about the disease as his symptoms are obvious, even on meds. I feel that some family are just not accepting the diagnosis, and while I appreciate the care they show, I do not want to waste energy or that of my husband.
Thoughts?

posted April 27, 2018
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A MyParkinsonsTeam Member

Fran, great advice! Everyone offers their own ideas when they learn of your illness and I find most of it to be of little help.

DebKathleen, PD is an incredibly puzzling disease as it effects us all differently. I'll share some ideas and you can give them a try. I've also included a link to some great organizations that are excellent sources of information. I really like Davis Phinney Foundation as they include presentations and stories from health care professionals and Parkinson's patients. If your husband is having trouble getting motivated, the stories from the patients really help.

You wrote he's stage one, so I assume he's still mobile. As Fran wrote, vigorous exercise is the best, so encourage your husband to do all he can. It often isn't easy, but it's well worth the effort as it's been proven to slow PD's progression. The goal is to keep him moving even on those days where he might not want to.

Tell him to set a goal to accomplish one thing each day. One thing usually leads to two, three, or more. Even if he only completes one activity, the sense of accomplishment feels wonderful. Accepting the fact that I can no longer do the things I did before was difficult for me to do, so following this daily routine really helped.

Help him to understand that we are "all in this boat together." He may have some tough days and some good ones. He may feel like his old self or may "wonder what planet he is on". All of this is normal with PD.

If possible, keep him involved in planning your daily activities. PD makes a patient feel like they are no longer relevant or their role in life is diminished.

Don't be afraid to do research on PD. I was reluctant to do so because it all seemed scary, but it kept me from accessing information that would have helped me. Just because it can happen doesn't mean it will. Stick with MPT and organizations like those in the link.

I hope that you find this helpful. Brian

https://parkinsonsnewstoday.com/2017/10/03/orga...

posted April 27, 2018
A MyParkinsonsTeam Member

Your welcome! I swear i have heard every possible thing you can imagine though. I maintain meticulous records and I test each thing my dad tries so I actually know which things work FOR HIM. One thing we do use is a supplement called n-acetyl-l-cysteine and it seems to make a big difference. My dads doc (who is a dr at a parkinsons center of excellence) has told me my dads condition is astounding to him - o I know the things I’m doing work for my dad. Even still he is greatly debilitated - but not as much as he could be. His doc said typically someone like my dad would now be 100% bed ridden and very likely have major problems swallowing. My dad can still stand up using his own strength, he can still walking using a gait training device to avoid falling AND he is eating some bbq ribs that I am feeding him right now- a rare event because he usually eats salmon or some type of fish for dinner. There is a lot of advice from everyone but what mTtets most is what works best for each person. (Hug)

posted May 1, 2018
A MyParkinsonsTeam Member

I agree with all this feedback - especially the feedback on exercise. There is credible testing on the exercise topic. I also strongly bellieve a diet loaded with anti-oxidants from organic fruits and veggies plus tons of fish makes a difference but don’t know if there has been studies on this. I think I’m going to try to force myself to just say “wow thNks for the tip I will have to check into that” and change the subject in my next sentence. Because it will take less time than debating with them or asking about the evidence and research supporting their statement. I might ask the person if they will do me a favor and research the evidence at sites I recommend back to them as an alternative next sentence after my first where I thank them though depending on the person lol.

posted April 29, 2018
A MyParkinsonsTeam Member

Yep friends , family, and completer strangers

posted April 28, 2018
A MyParkinsonsTeam Member

I agree. Show me some research that proves what you are saying and the company/business that did the research. Sometimes you get research, but the people doing it are not reliable. If you have any questions about any medication, procedure, treatment you can always contact the Parkinsons Foundation at (Phone number can only be seen by the question and answer creators) and they should be able to give you the straight scoup without you having to do a whole lot of research. They are also a good source for any question(s) you may have regarding symptoms, treatment, emotional response, and every thing in general regarding Parkinson's Disease. Do you belong to a support group? If not, I would find one and join it. Again, if you cannot find one one, again contact the Parkinson's Foundation and they can help you find one close to you. Good luck! Just remember, each day is what you make it - so why not make it a good one!

posted April 27, 2018

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