Hi, @A MyParkinsonsTeam Member W Carpenter . One of the reasons it’s so important for your partner to accompany you to the dr.’s appointment is that often s/he can share observations of things that you might not have been aware of. Parkinson’s Foundation has many training/education resources for caregivers in their learning lab. Let me know if you want more specific information.

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A MyParki...

Scott, Bob’s heart goes out to you, your wife Liz, and your family. The love between you comes through clearly, and seeing you holding that precious little girl is a beautiful reminder of everything Parkinson’s can never take away.

Bob may understand why you and Liz are struggling. You have been told you have stage-one Parkinson’s, you are noticing changes in your balance and cognitive abilities, and you have a family depending on you both. That can make the unknown future feel frightening, even before the disease has caused major physical limitations.

Learning about Parkinson’s may help replace some of that fear with understanding. Just remember that everyone’s journey is different, so do not let the most frightening stories on the internet convince you that they describe your future. Work with your neurologist, ask questions, and learn what you can do now for your balance, thinking, health, and family.

Bob offers these words from his heart:

Parkinson’s may put a rumble in the road,
but don’t carry tomorrow as today’s heavy load.
Learn what you can, and prepare where you must,
but leave room for laughter, for love, and for trust.

As you travel along, your understanding will grow,
and you’ll learn a few things the rest of us know.
There may be some bumps and an unexpected bend,
but you and Liz can face them together, my friend.

You and Liz are frightened, and that is understandable. Give yourselves time to adjust and keep talking honestly with each other. You have already worked through other difficult times together, and you can learn to work through this one too. You are also surrounded by people here who have faced many of the same fears and can share what they have learned.

Your family needs Scott living for today—
not lost in the fear of what may come someday.
So love them, hold them, and enjoy what is true:
this day still belongs to your family and you.

Bob cannot promise that every mile will be smooth, but he hopes that, as you travel, you will find your own groove. With each question you ask and each answer you know, some fear may grow smaller while confidence can grow.

Take it one day, one answer, and one laugh at a time—and when Parkinson’s puts a rumble in the road, Bob says to hold on tight and give that bumpy old road a little rhyme!

Hi Scott,
Great question. The myparkinsonsteam response is rea)ly good. For me, starting physical therapy was the best thing for my balance issues. Within a few months I was close to being normal. The trick is to apply what you learn in PT to your daily life. I go to PT 2x a week and go to the gym everyday. At the gym I spend 30 minutes on the balance exercises.

Exercise is the best thing for you. I cannot stress that enough. Not only does it help short term, you get stronger to better handle the future.

I haven't noticed cognitive issues much. I do jigsaw puzzles, play sudocu and other games and I think that helps.

Ww are always here for you and Liz.

Darren

Hi Scott I was diagnosed in 2024 and I was in stage 3 already it was hard for me to hear it I shook so bad I couldn't do anything and I have balance issues memory cognitive and concentration issues and swallowing difficulties but since being on here I have learned a lot about Parkinson's and so much support this is a great site to learn all about Parkinson's and get support I hope this helps
Best Wishes
Theresa Generes

Hi Scott
Don't worry about it at all
I have seen this happen lots of times when we say you find out you have Parkinson everything goes through your mind such as the wife won't want me anymore.I don't want to be holding her back
We are still young will she be able to manage me you won't want to put her out she would be better to go and have a life of her own and so on Now Scott the majority of the people in this group will
tell you the same thing the ones with the spouses or partners
But it does not always turn out that way husband and wife are still together and are doing fine as you go on through the years you forget about all of that and you get so used to it. it becomes second nature
This life now is your new life
I think its the shock when you hear the word You have got parkinson for the first time
you begin to panic and wonder all the what ifs and no to people are the same
every day is different some
days good some not so good
but you both will learn how to live with it
Well that's my take on it Scott
Best wishes
Therese Byrne 🇮🇪 ☘️