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Never Say This To People With Parkinson Disease

Updated on February 1, 2017

Hope For All

With any Illness there is hope.
With any Illness there is hope. | Source

Not Just Old People

The youngest person with PD I have met is 26 years old. He is hospitalized because of the violent tremors and breathing problems. I have met teachers, nurses, doctors, and some very young people with PD. I am blessed as I can walk and function. I am able to reason and work part time, if only a few hours. I have composed a list of what I think it takes to get though.

* be tough

* mind straight

* keep your focus on what you love

* find a neurologist you can communicate with

* take the right medication

* do your physical therapy

* never give up


I know another person who was 42 when they diagnosed her. The big myth is Parkinson's is for old people. Many people have family members who have this disease, but that is not true in every case. I have not one person in my family that I know of that had Parkinson.

When you are first diagnosed it is very strange. There are five stages to the disease. The doctors can only treat the symptoms of the disease, there is no cure. This has been the most humbling experience of my life.


I Live By These

You have to be tough to get though. There is nothing I can do to change it. I try and keep my mind straight, and if something is not right I let it go. I focus on what I love, Jesus, family and my guitar. I have also found out the guitar keeps the big tremors silenced. I wonder if that would work for other PD patients.

I have finally found a Neurologist I can communicate with. It took me 3 years but it was worth switching doctors. I can ask this doctor anything, and I can call him if I need him. Take the right medication, even if it means getting a new doctor. Who really knows, some may do better without the medication. Only you can answer how you feel.

Do your physical therapy, and remember to be as active as you can. Exercise is extremely important with PD. Remember you are strong so never give up. One last thing, I never compare myself to other PD people. If one person can walk a mile and I can only walk to the mail box, a hundred feet, I am grateful for what I can do.

What You Never Ask

I went to the dentist and his first question was, How is the dementia? I do not have dementia at least not yet. The aging process can cause just as much dementia in people without Parkinson. I have a friend that also has Parkinson, and she told me, no one ever ask me how I am just how is the Parkinson. I try and remember what she said and ask how the person is not the disease.

Are you on drugs? No, I just take my prescription drugs. I wonder how many other PD patients have been asked this questions. My friend I was with got so mad and I told her it is fine. I really can not waste my time worrying about what others think.

I was in the hospital last month from sever pain from cramps. A friend came to visit and the first thing she told me was she has watched me go downhill the last 3 months. It does not hurt, but reminds me to build up and never tear down.

Check Your Knowledge


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Some Helpful Things

Get a good Neurologist, one that specialises in movement disorder.
Get a good Neurologist, one that specialises in movement disorder. | Source
Taking the girls on a wagon ride.
Taking the girls on a wagon ride. | Source

Pets

Pets provide a helpful mood for people with depression, a side effect of Parkinson.
Pets provide a helpful mood for people with depression, a side effect of Parkinson. | Source

Important Rules

1. exercise - walk, ride a 3 wheel bike,

2. keep active, music, playing the guitar seems to keep the resting tremor calm

3. stay social

4. call people

5. Pray
Try and get a new hobby and share it with others. Read everyday to keep informed of what is happening near you. The disease has brought some positive changes, increased my faith,hope, peace and love of others.

Parkinson's Treatment

Parkinson's Treatment 10 Secrets is one of the better books I have read. It was given to me by a parishioner from the church I attend. I was very grateful for the book as it makes the most sense. They have a wonderful department at the University of Florida where Dr. Okun works. I am very fortunate to live close to Gainesville. Updated, January 31st. 2017. I started my treatment at Dr. Okun's clinic and so far it seems to be the best movement center. I had my first visit in January and found the Doctors to be great. I have learned I must always have a neurologist that specializes in Parkinson's.

The book is written for the common person and you do not need to be a doctor to understand it. Everyone wants their dreams and hopes to continue no matter how old. When you hear those four words it can crush you if you let it. You have Parkinson Disease.

PD patients have good and bad days. Take advantage of the good ones.

Comments

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  • ladyguitarpicker profile image
    Author

    stella vadakin 2 months ago from 3460NW 50 St Bell, Fl32619

    Peggy Thanks for your comments, Have good and bad days. Music is a big help for me. I can't write too much but still enjoy reading.

  • Peggy W profile image

    Peggy Woods 2 months ago from Houston, Texas

    Thanks for sharing your story about having Parkinson's and how to deal with people who have it. Your attitude about life is great. Writing this hub may help numerous people. Kudos to you! Will be sharing this.

    Happy Valentine's Day Stella! Wishing you a beautiful day and upcoming weekend.

  • ladyguitarpicker profile image
    Author

    stella vadakin 8 months ago from 3460NW 50 St Bell, Fl32619

    Flourish Anyway, Thanks for your comments, It seems we all get something in this life. I am strong so I will not give up. I do not know much about MS, but I am sure it is no fun. Stay strong, Stella

  • FlourishAnyway profile image

    FlourishAnyway 9 months ago from USA

    I'm sorry you have Parkinson's. My husband's grandmother had it. As a person with MS I can identify with your feelings when people ask unintentionally rude questions or focus more on the disease than the person. Stay strong and focused on your health and happiness.

  • Karen Hellier profile image

    Karen Hellier 10 months ago from Georgia

    I admire you for sharing your struggle with Parkinson's disease. I never knew too much about this disease although my uncle was diagnosed with it a few years ago at the age of 73. he does not like to talk about it though so the only person who he shares his struggle is his wife ( my aunt). Thank you for being brave enough to share it, and may God bless you.

  • ladyguitarpicker profile image
    Author

    stella vadakin 10 months ago from 3460NW 50 St Bell, Fl32619

    Shyron E shenko, Thank you for reading and your comments. I have found out that exercise is a big help for me. I try and keep myself walking. I just don't want to end up in a wheelchair. Thanks, Stella

  • Jodah profile image

    John Hansen 10 months ago from Queensland Australia

    Stella, thank you so much for sharing this personal experience. I have a friend with Parkinsons who is coping well. My wife has fibromyalgia and chronic fatigue. There is sometimes a link between those,Parkinson's and MS I have read. Anyway. You give very good advice to sufferers and others and how to treat them. Well done.

  • Shyron E Shenko profile image

    Shyron E Shenko 10 months ago from Texas

    Hello Stella, how are you today? I do hope this is one of your better days.

    Thank you for explaining how you feel. My mom had PD, but I did not ask about her disease or her medication, which she would refuse to take anyway.

    I know that you like my mom are blessed with a strength that most of us will never know.

    It is strange what I remember most about mom's PD was that she liked to hear the click of her rings against the telephone when she talked and would hold the phone with her left hand.

    I am glad that you have your guitar.

    Many Blessings and hugs.

  • pstraubie48 profile image

    Patricia Scott 10 months ago from sunny Florida

    O Stella. I so get every word of what you are saying. It seems that folks do not always (or is that 'often') think before speaking. As you know if they did the words that come out would be chosen more carefully. YOU definitely have the right attitude....and as in any disease, YOU really are the key. It is your mindset that helps you to live with whatever comes your way.

    The reason I say I 'get it' is this: you may not have read the posts here on HP about my daughter and eldest grandson....both of them are sick and have been for many years. One of the classic comments we hear is: "O, she/he looks so well." The way we look often does not tell how we FEEL. And you know what? I even had one person ask me when my daughter was going to die???!!! Can you imagine?

    My heart goes out to you as you make your journey, Stella. It sounds like you are managing it and it is not managing you.

    Many of God's Angels are on the way to you once again this morning ps shared and pinned

  • MizBejabbers profile image

    MizBejabbers 10 months ago

    Thank you for sharing your story, Stella. It is a debilitating disease, and I would never ask anyone who shakes why. No one in my family has Parkinsons, but I had an aunt with a nerve disorder whose hands shook, and my sister was on a medication once that caused her to shake uncontrollably. A coworker's husband had Parkinsons and she kept me updated on his condition until he died of something entirely unrelated at about age 80.

    I admire your spirit, your guitar playing, and your dog. I grew up with beagles and just love them. I think the guitar and the computer both probably are good therapy. Thank you for an enlightening hub.

  • Faith Reaper profile image

    Faith Reaper 10 months ago from southern USA

    Hi Dear Stella,

    Wow, this is an important hub you've shared here about your personal struggles with Parkinson's disease, and how you've found ways to cope. I'm happy that playing the guitar is one of those ways. That's amazing.

    I missed this insightful hub here somehow, and so glad I found it now!

    You are a strong woman. I will keep you in my prayers.

    God bless you, sweet friend

  • ladyguitarpicker profile image
    Author

    stella vadakin 11 months ago from 3460NW 50 St Bell, Fl32619

    Vocalcoach, Thank you for your comments on my hub. I am slow at getting back to people. The singing is not where I want it to be, but it is a lot of fun. My Neurologist is pleased I am doing this as it really can help. God Bless, Stella

  • vocalcoach profile image

    Audrey Hunt 11 months ago from Nashville Tn.

    Dear Stella,

    You have a marvelous attitude. I believe our attitude can have a positive effect on disease. I know from your comments on my singing hub you've joined a church group (singing.) Just look at you! Along with playing your guitar regularly you choose to be grateful for "being able to walk to the mailbox" even though others can walk further. You are an inspiration, not only to me, but to countless others. Bless your heart!

    I will share this article with others so they may also prevail upon your sweetness, courage and shining light.

    Blessings to you.

    Audrey

  • Missy Smith profile image

    Missy Smith 12 months ago from Florida

    Hello Stella, I did not know you had PD. My aunt had it as well, and I don't remember any of us asking how the Parkinson was going, just if she was feeling alright. I guess people don't realize what they do sometimes, and I can imagine how frustrating it is for you. I can tell that you are a real warrior in fighting it. You are truly inspiring. You are strong Stella, and you will love your life even if it's fighting an aggravating disease along the way. You have a great spirit. May God continue to bless you, and I know he will. ~Missy

  • Nell Rose profile image

    Nell Rose 12 months ago from England

    Hi, sorry to hear you have Parkinsons, my dad had it for years too, and yes exercise etc is great, my dad was always out and about to start with, then he did get lazy, and because of that he tended to stiffen up, but I know of others who have been able to function properly for years, you are amazing, and I hope all is well?

  • ladyguitarpicker profile image
    Author

    stella vadakin 12 months ago from 3460NW 50 St Bell, Fl32619

    RTalloni, Thanks for reading and your comments.

  • RTalloni profile image

    RTalloni 12 months ago from the short journey

    The insight you share is very helpful in understanding what Parkinson's patients face. The tips for sufferers and their friends are useful and important to keep in mind. Thank you for posting about what you've experienced and learned.

  • Suhail and my dog profile image

    Suhail Zubaid aka Clark Kent 12 months ago from Mississauga, ON

    Hi Stella,

    Thank you for sharing a powerful hub with lots of information. And thanks for showing us that keeping a positive frame of mind helps overcome all challenges.

    I can totally relate to keeping a pet and/or playing / listening to music that helps overcoming depression for these two hobbies help me every single day.

    I will pray for your health. May God continue to bless you with all the happiness and joys, always.

  • ladyguitarpicker profile image
    Author

    stella vadakin 13 months ago from 3460NW 50 St Bell, Fl32619

    Vellur, thank you, I appreciate it.

  • Vellur profile image

    Nithya Venkat 13 months ago from Dubai

    Thank you for sharing your experiences, sending lots of prayers your way.

  • ladyguitarpicker profile image
    Author

    stella vadakin 13 months ago from 3460NW 50 St Bell, Fl32619

    Larry, thanks for stopping by.

  • Larry Rankin profile image

    Larry Rankin 13 months ago from Oklahoma

    Very insightful.

  • ladyguitarpicker profile image
    Author

    stella vadakin 14 months ago from 3460NW 50 St Bell, Fl32619

    pstraubie48, Thanks for your comment. I try and do positive things each day. Like you, I have others to watch over. Bless you, Stella

  • pstraubie48 profile image

    Patricia Scott 14 months ago from sunny Florida

    You are so right....ladyguitarpicker....remain tough...it will see you through...So appreciative that you shared these thoughts as they apply to so many challenges that we face.

    Wishing you a lovely day...Angels are once again on the way to you ps

  • ladyguitarpicker profile image
    Author

    stella vadakin 14 months ago from 3460NW 50 St Bell, Fl32619

    Mel, thanks for your comments. I have had PD since 2012, and try and keep as active as I can. I have met so many wonderful people with the disease, but it is hard to see so many young people getting PD. Stella

  • ladyguitarpicker profile image
    Author

    stella vadakin 14 months ago from 3460NW 50 St Bell, Fl32619

    AliciaC, thank you for your comments. I am so blessed to still get around. I have been blessed this year to find one of the most unusual guitar players, who keeps me occupied with good thoughts. Thanks and God Bless, Stella

  • Mel Carriere profile image

    Mel Carriere 14 months ago from San Diego California

    You are remarkable for what you do in spite of your affliction. I had a coworker who was forced into early retirement by PD. It can hit anyone at any time, look at what happened to Michael J Fox. Thanks for helping build awareness.

  • AliciaC profile image

    Linda Crampton 14 months ago from British Columbia, Canada

    I'm sorry that you have Parkinson's disease, Stella. I'm very glad that you've discovered things that help you, though. It's interesting to hear that playing the guitar is one of them. That's important information! You've shared lots of other great tips to help people with the disease. Best wishes to you.

  • ladyguitarpicker profile image
    Author

    stella vadakin 14 months ago from 3460NW 50 St Bell, Fl32619

    Surabhi, thank you so much for the comment. I really appreciate the people on hubpages and love to read the articles. I will be looking forward to reading yours. God Bless, Stella

  • profile image

    Surabhi Kaura 14 months ago

    My Dear Stella, I sincerely thank you for sharing the hub. My prayers and loving thoughts are always with you. They say, faith is very powerful. Faith begins when reasons fail. Much Love, my Sweet... much. God bless you.

  • Michael-Milec profile image

    Michael-Milec 14 months ago

    That is wonderful 1/8 mile Stella. Praise God. At seventy after my first hip-surgery for months I was walking on crutches . After nine hundred-ninety nine days (?!) , gradually increasing one minute a week i have reached a goal granted me as a gift answered to my prayers. Our heavenly Father's love is sustaining our needs. Walk in His blessing.

  • ladyguitarpicker profile image
    Author

    stella vadakin 14 months ago from 3460NW 50 St Bell, Fl32619

    Michael -Milec, Thanks for your comments and reading my article. I would be grateful for your prayers and following me on HubPages. I would like to read your articles and comment on them. You are doing great walking 4 miles. I use to walk 3 a day but I am now walking about an 1/8 mile . Thank you, Stella

  • ladyguitarpicker profile image
    Author

    stella vadakin 14 months ago from 3460NW 50 St Bell, Fl32619

    Jackie, Glad to hear from you. I find that the guitar is a big help while the tremor is only on the left side of the body. I thank God for keeping it on one side only. I will mention it my next appointment. Thank you for your comments and prayers it means a lot . God Bless, Stella

  • Kiss andTales profile image

    Kiss andTales 14 months ago

    you are most appreciated Stella, I really hope you and your friend the blessings instore to come, and I will pray for you and your friend .we all are battling something , but our cure is not far off.

  • Michael-Milec profile image

    Michael-Milec 14 months ago

    Hello ladyguitarpicker.

    "Never Say This..." caught my attention in general, 'To People With Parkinson Disease' in particular. So much helpful to know controlling my vocabulary and used proper words in conversation, especially with the present any sickness. Thank you for sharing. True, aging is very strange territory in our earthly journey , however the natural desire is to live longer, long enough as we can stay healthy, happy and productive... In y family there were some over eighty , living active to the last day... since my youth I was eager to talk to the " living history"- older people with experience. One believing , godly living child of God told me her secret, and for last seventy years I am reminding God an myself , "so teach us to num,her our days that we may get us heart of wisdom..." It works. The word we say out-loud have power to change. Praying as you say is the most important conversation in our daily life from early youth and on , praying The Lord's prayer one of the most efficient reminder that we are the children, we do have "our Father" and He cares for us...

    The rule to live by you are listing should be daily credo for every person thirty and over pursuit seriously. Reading and memorizing Bible verses, and walking.daily... My physical and mental ability is on increase last three years since my son provided for me a Fitbit and I started discipline myself in a lifestyle. Eating right, drinking right, talking right and listening right. At eighty plus, I am in full woodworking force " stand by" as needed, other days I am walking at least four miles a day, exercising regularly as a person with two hip surgery can, and thank God living free of any medication. ..

    My suggestion to everyone I have chance to talk is, Walk, be active , walk... Begins wit five minutes a day for a week, then add minute each following week, at the end of a year you will master one full hour... There is a ninety one year young lady in the neighborhood, living by herself, even driving occasionally, and I am listening to her wisdom . I have learned from your experience a lot. Than you so much . If you wouldn't mind, I would include you in my prayers and by your permission I would like to be your follower on HP.

    God bless and protect you. Peace with us.

  • ladyguitarpicker profile image
    Author

    stella vadakin 14 months ago from 3460NW 50 St Bell, Fl32619

    Kiss and Tales, Thank you for reading and stopping by to comment. Your opinion is greatly appreciated. I will stop and visit Jworg and see what I find out. I have a friend that went off all her medication, I hope it works for her. She is a retired nurse, so she should know how to handle her PD. Getting older is no fun, but then we have no choice. God Bless, Stella

  • ladyguitarpicker profile image
    Author

    stella vadakin 14 months ago from 3460NW 50 St Bell, Fl32619

    Paul, Thank you for reading and sharing your comments. I am glad your mother had someone to care for her. I was on the patch for 3 years but it started to burn the skin,so I am on carbidopa pills now. The patch comes from Germany and worked good but I could not stay on it. Thanks, Stella

  • Paul Kuehn profile image

    Paul Richard Kuehn 14 months ago from Udorn City, Thailand

    Thank you for sharing a very informative hub. My mother first showed the symptoms of Parkinson Disease when she was 80 and her right hand started to uncontrollably shake. She didn't get a definite diagnosis having PD until four of five years later. I remember her getting medication through a patch which the United States stopped selling shortly after she started using it. When she was 88, mom wasn't able to swallow food, so she had to be fed through a tube into her stomach the last 1 and one-half to two years of her life. She was also bed-ridden, but my youngest sister cared for ma until she passed away six months after her 90th birthday. I hope you are getting good treatment for your PD and have a positive outlook on life. Good luck! I am sharing this hub with Hubpages followers.

  • Kiss andTales profile image

    Kiss andTales 14 months ago

    Hello Stella , I think it is a wonderful hub you have written here on Parkinsons disease, I am greatful to know you more in your plight and struggles of this disease and how you cope with it. I would like to share with you this reminder by Jehovah and Jesus,

    Re 21:4 And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.”

    Isa 33:24 And no resident will say: “I am sick.” The people dwelling in the land will be pardoned for their error.

    So remember ,1Pe 5:7 while you throw all your anxiety on him, because he cares for you.

    You and many can experience healing to the fullest extent under Jesus Administration.

    Remember to visit Jworg it will tell you more.

    Thank you for sharing your experience I appreciate you very much.

  • Kiss andTales profile image

    Kiss andTales 14 months ago

    Hello Stella , I think it is a wonderful hub you have written here on Parkinsons disease, I am greatful to know you more in your plight and struggles of this disease and how you cope with it. I would like to share with you this reminder by Jehovah and Jesus,

    Re 21:4 And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.”

    Isa 33:24 And no resident will say: “I am sick.” The people dwelling in the land will be pardoned for their error.

    So remember ,1Pe 5:7 while you throw all your anxiety on him, because he cares for you.

    You and many can experience healing to the fullest extent under Jesus Administration.

    Remember to visit Jworg it will tell you more.

    Thank you for sharing your experience appreciate you very much.

  • Jackie Lynnley profile image

    Jackie Lynnley 14 months ago from The Beautiful South

    You should be sure to tell your doctor and anyone else you can about the guitar helping you. That sounds like something that could lead to a benefit to many others. I mean maybe they don't have to play guitar but something either in the physical action or emotion or mental therapy or combination of both. You just never know but it is well worth mentioning.

    I wish you my best. As we age it just seems a question of what and when and keeping a good attitude and positive thinking is the most important thing. My prayers are with you.

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