Friends and Family Need to do Research

[joyceann]

In the past year, I have had my daughter and now 2 of my best friends tell me I take too many drugs. After being diagnosed with Early Onset Parkinson's 7 years ago, I began this news thinking I would conquer the world and hide it from my students and colleagues. Fast forward to now, and I have just been approved for Social Security Disability.

What has been disheartening for me, is the fact that my family and friends who are judging me, haven't researched what has happened to me over the past seven years and expect to see the same person they have always known. Because I sometimes appear slightly intoxicated, especially in the evening, when my medication is wearing off, I must be overdosing!

I have a top notch physician, who is the head of the Shands Movement Disorder Learning Division for University of Florida. He monitors every drug I take and I have been under his care since almost the beginning. His top priority for me is to do whatever he can to make my life as normal as possible. And he has done that for me.

My mom has stuck by me and has been there to help me from the very start. She asks my doctor questions about what to expect and isn't shocked at the changes taking place. I left my husband and now live in a small apartment close to my mom. I need to be with people who aren't judgmental and bossy (husband), and take the time to learn more about this disease so that they can help me and not make me feel like I'm some drug addict.

Has anyone else had to face these kind of s situations?

[jillannf6]

hi it is easy 4 anyone to be judgmental about the drugs you take

I have PSP for which there are no effective meds 2 take and it's v difficult when i appear to be ok (apart fm when i am falling over in their presence and then they might understand a little of my problems)

But on the whole people are v supportive of me and try to assist me at all times even tho they have no idea of the illness or what effect it can have on me or my carer

lol jILL

AND HANG ON IN THERE TAKIGN WHATEVER MEDS HELP U

[Kadie57]

Ahh the judgmental factor! Sometimes people are so human, because they don't walk our crooked off balance path, they have no idea what we go through 24/7. As for the meds I get the drunken episodes when I have to much Sinement(carbadopa/levadopa) in my system. You and your doctor know what is to much.

You ask for situations I have had here's a true story,

I was working a craft show when I was first diagnosed and I was shaking badly, I did not know how bad in those days until I saw a video of me before the DBS implants. Any way this women marched up to me and said loudly ( I have that allot, like Parkinson causes deaf ears) Do you know the LORD? I said excuse me and she said again, Louder.......Do you know the LORD? I said Yes I do. Then she said, You must not, because he would remove those demons that make you shake. I was so Mad, beyond words..... Then I calmly said to her, What church do you attend? remind me not to go there you must not be listening to the sermons very good to be that judgmental. People around me laughed, I made a small name tag sign, stuck it to my shirt that read, NO I do not have demons, I just have Parkinson's! then I laughed and went home a cried for a couple hours.

I have not drank for 20 yrs, medicine and alcohol do not mix well, so any one who sees me intoxicated acting know its my meds acting up.

While it is hard to ignore the foolish people and it hurts to have people judge, try to be stronger than they are, only the week make fun of things they don't understand!

((HUGS)) Take care.......stay strong, better days ahead..........KADIE

[PatV in reply to Kadie57]

I carry my "I am not intoxicated, I have Parkinsons" cards and give them to these jerks. (no pun intended). I'm sober 16 years, dx 10 on sinimet 8. I'm 74 and I'm a happy pwp.

[redean]

Yes I understand what you mean about feeling judged about your health decisions and feeling like you're not doing enough. It's very hard to listen to.

[PatV]

Oh, yes, my adult kids are supportive at times but at others I have to explain in detail what I'm going through. One daughter was ready to move me into assisted living the day I retired. At first they would go with me to PD seminars and doctors' appointments. But they do have problems of their own and show up if I really need help. Fortunate to have a community of support. Are any of your judgmental friends in recovery from substance abuse? They should know that taking meds AS PRESCRIBED is part of it. I can identify with leaving "bossy" husband. SO happy to be single. Now when I find one of these "know-it-alls", I look at it as an opportunity to have dialog and educate them.

Don't be swayed!

[prb167]

hello Joyceann,

Maybe you could suggest to all these people who think they can pass judgement on the way you cope with your everyday life that they could trade places for a week and then comment.

[JohnPepper]

Hi Joyceanne. I don't know if you have read any of my posts on this website? I was diagnosed in 1992, although with the benefit of hindsight, I have had Pd symptoms since 1963. I took eldepryl for eight years, having started on sinemet and simatryl for the first two years. In 2002 I wrote a book about my experience, because at that stage, nobody would ever know that I still had Pd. I have not taken any Pd medication since 2002. I still live a 'normal life', even at the age of 80. I have met up with an enormous amount of negativity, especially from the medical profession. I can understand this, as it has not happened before. My case was very different to anybody else I know. When I was finally diagnosed I had been doing regular meaningful exercise for over 23 years. Also, I was put onto a monotherapy of eldepryl for eight years. Eldepryl helps you to retain the dopamine you do still have in your brain. It stops the natural breakdown of the dopamine. I also got rid of all the harmful stress in my life, at great expense to myself. I stopped doing anything that was causing me stress. There is more to my story, but those are the main things that I did.

Have you heard or read anything about GDNF and Dr Beth Fisher's announcement at the 1st World Parkinson's Conference held in Washington DC? Did you know that when we do hard walking for one hour three times a week, our brains produce this GDNF. So, We have a built-in repair kit for Pd. The fact that few people are even aware of this, and it was announced over eight years go. We should ll be doing hard walking, three times a week. Who needs medication?

I admire you for leaving your negative husband. I gave up my high-powered job, for the same reason. Did you feel physically better after you left him?

Kind regards

John Pepper

[redread in reply to JohnPepper]

Purchased your book several years ago for my husband. Recently caught up with you on this website and just wanted to ask if you are "really certain" what you have is traditional Parkinson's. The reason I ask is because my husband has been through three "diagnoses" and they're still not sure about Parknison's. Also, last November, after many years of illness (no muscle symptoms until 11/13), our 53 yr old daughter was diagnosed with Dermatomyositis (DM) a muscle/skin autoimmune disorder. Many others have a fairly similar disorder called Polymiositis( PM, that is the muscle disorder without skin involvement). We're discovering there are many muscle disorders that appear to genetically interrelate on a broad spectrum. The only reason my husband was given the diagnosis he has is because it "fits" closely with Parkinsonism. Have you always been sure about your diagnosis?

[Hidden in reply to JohnPepper]

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

[JohnPepper in reply to Hidden]

Hi GymBag. You are correct. However! Had I have listened to my neurologist I would not be where I am today. He wanted me to go back onto Sinemet in 2002, when I was already feeling as well as I am today. That would have been disastrous. I took it for three months and then, because it was not doing me any good, I stopped taking it. I also stopped going to him.

John

[JohnPepper]

Hi Redread. Yes I am positive that I do have Pd. I was not positive until a scientist came to my country to look into my Pd case. This scientist went through all my medical records and those of my neurologists, and interviewed each one of them. This scientist has subsequently verified all the scientific details and is satisfied that it all fits. I am expecting this to all be published in the very near future.

Pd is very difficult to diagnose, because there is no known set of positive symptoms. We are all different. I am of the opinion that maybe 30% of Pd sufferers could possibly benefit from what I am doing. They cannot do any harm to themselves, if they are able to do it, even if it does not reverse their symptoms.

If I can help 30% of 10 million people, it is worth every penny I spend on talking to patients worldwide.

John