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Real members of MyParkinsonsTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Looking Back At Your Parkinsons, What Would You Share With Someone Newly Diagnosed?

Looking Back At Your Parkinsons, What Would You Share With Someone Newly Diagnosed?

A MyParkinsonsTeam Member said:

Stay calm. It's not the end of the world.

Tell your family members that you have Parkinson's and talk with them about it.

Be intelligent about it: Learn all you can about your own condition. Pamphlets, books, seminars, talking with others who have Parkinson's, webinars (Michael J Fox Foundation 3rd Thursday webinars are excellent), watch exercise videos. Well don't just watch! Get on the floor and follow the leader.

Talk with your employer and co-workers about it.

If you don't have an exercise program, get one. Health club, Yoga classes (my favourite), Rock Steady Boxing, walking, running. Make it something you will enjoy. It doesn't have to be expensive. There are things you can do at home like walking up and down stairs. My neighbour walks up and down her driveway for 30 minutes a day. You can think of other ideas. Follow along with exercise programs on television.

If exercises are too difficult to do on your own, you might want to ask your doctor for a referral to a Physiotherapist.

Get involved in a social group such as My Parkinson's Team. Or a group in your neighbourhood that might meet once or twice a week.

Once your neurologist gives you an interim diagnosis of Parkinson's disease, ask to be referred to a neurologist who is a Movement Disorders Specialist (MDS).

Watch your diet. Choose healthy foods. Basically follow the Canada Food Guide, which you can get on line. If you don't understand it, make an appointment with a nutritionist.

Take your medication every time, on time, and exactly the way your MDS tells you to take it.

You will add more to this list as you learn how to live with PD.

posted about 4 years ago
A MyParkinsonsTeam Member said:

Stay calm. Advocate for yourself. There is help, Get an MDS (Movement Disorders Specialist).Your neurologist or MD can refer you. Take your medications on time, every time. Create a rigorous exercise plan for yourself. Be sure you have a healthy diet. Try to avoid anxiety provoking, or stressful, events and activities. Learn to laugh at yourself. If you have nothing else to do, go outside for a walk. This is not an all inclusive list. You will find things on your own that will relieve some symptoms. Realize that so far there is no cure, but we do the best we can with what we have. Try to be as independent as you. Be kind to the people who take care of you they will be needed later in your journey.

I wish you well.

posted about 4 years ago
A MyParkinsonsTeam Member said:

Look into stem cell injection theropy! I had this done in May of this year and it has had a profound affect on my sypmtoms. Facial masking is gone, no longer shuffling my feet, no problem getting out of a chair, better motor control, no more movement freezing, some sense of smell coming back, no more depression, much better out look on life, tremors have reduced by about 50%. I recommend Stemgenex in San Diego, CA. This treatment seems to have haulted the progression of my PD, and has minimized or eliminated many of my symptoms. Mentally, I feel as good as I did prior to my diagnosis 6 yrs ago. There are no adverse affects, only the potential for relief of the symptoms. I wish I had heard of this years ago before my symptoms got worse.

posted almost 4 years ago
A MyParkinsonsTeam Member said:

I would begin with a total self mental assessment. There is a period that I went through and I will try and stay in chronological order. When I was originally diagnosed I would not believe them. I wanted a second and third opinion. It was true as each doctor confirmed. This was my state of denial. I thought at the time I was larger than life and then bang out of nowhere I was humbled. My life views changed forever at that point.
The next stage was depression. For about three months I did not even want to talk about it let alone be seen. Then I woke one morning and had a clear vision on what I was going to do. I was no longer embarrassed.
I immediately set a personal goal that I work on each day. The goal is "What can I do to help other people with PD and how can I assist in finding a cure".
I did some research on clinical studies and found one I was interested in. I entered the study with three things in mind: I understood the risks associated with clinical studies but was not discouraged as I thought I had lived a pretty good life and if it should cost me mine I was up for the challen
ge. I wanted to help PD patients, I have identical twin boys and wanted to try and prevent them from getting it, and if I was successful in the two mentioned maybe I could help myself.
As a result I have met people that I have became very close friends with. When I entered the study I was moderate. Today they have a difficult time determining if they can even find it in me. I live with a creed I would like to share. "No matter how bad your day is always get up". I have done this and I am a survivor who will never, ever quit until we be this sneaky, nasty devil. I wish everyone the same or better success. The hospital staff are wonderful people who always instill hope in me when I start to feel down. I cannot thank them enough!
Leo Kirk

posted about 4 years ago
A MyParkinsonsTeam Member said:

Learn as much as you can, join a support group and keep moving. Pick something you enjoy whether it be yoga, balance, walking, riding an exercise bike or a bicycle, but keep moving. Exercise your brain with scrabble, crosswords, reading etc. have a hobby such as coin and stamp collecting, needlework or knitting. Keep in contact with friends and family.

posted almost 3 years ago
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