Living with Parkinson's Disease - Meet others & come say hi

Many colleges have stopped making English classes a requirement for STEM
degrees, using the argument that there's so much techie stuff that they
haven't time for silly foo-foo classes like English. So, these kids
graduate with their heads full of knowledge, but they are incapable of
writing a coherent English sentence. And they are hired by companies like
the one I worked for. These kids were gyped by their educators because no
one realized that, while it's fabulous that they have all this valuable
information between their own ears, it's totally useless if they are unable
to put this information between the ears of OTHER people. And the way that
we do that is language. While explaining something face-to-face is useful,
it is not sufficient ---- we also have to put it in writing so more people
can have the benefit of all the things you have learned. So, much of my
work involved teaching our brlliant young people how to write, and brutally
pencil-whipping what they put down on paper so that it could be understood
by someone who may not know all the things they knew. So sending all my
typos out into the world can be a tad more distressing for me than it is
for normal folks. But I am congenitially unable to abstain from putting
words -- lots and lots of words--together and sending them out into the
world in the hope that they can be helpful -- or at least amusing -- to
others (because making folks chuckle a bit is also helpful, at least for
me ).

@jatonlouise
Well said! Actually I loved English in school and college. I actually met my spouse in my High School English class. That was when I was 15yo. Older and sometimes wiser. 💕🫂

Hi my name is Jonimac52 . I am 73 & was diagnosed with light Parkinson’s first of Jan this year. Have not been able to walk since November of last year. I’m on carbadopa/levadopa 25/100 and currently see outpatient therapist twice a week. With the meds and therapy I’ve regained some ability to stand and walk a few steps assisted. I have problems keeping my blood pressure regulated so getting up and down can be tricky as it causes orthostatic hypertension. Anyone else experiencing the same?

@jonimac52 - welcome. I'm glad you have a diagnosis and know what you are dealing with.

Exciting you've regained some ability to stand and walk!

How are you feeling about this still relatively new diagnosis? Are you experiencing any side effects from the medications so far?

How do others deal with Parkinson's anxiety

Hello @larias1955, and welcome to the PD support group on Mayo Connect. From your post, it sounds like PD is a recent diagnosis for you. Is my understanding correct?

You ask how to deal with anxiety related to PD. The best way to relieve anxiety is to be as proactive as possible. My suggestion would be to have an evaluation by a movement disorder specialist who can suggest medications to control the most troubling symptoms. There is also specific physical therapy that can reduce PD symptoms.

I look forward to hearing from you again. Please share what you have done so far to treat your PD symptoms.

@macbeth
I also have Ischemic Heart Disease, as well as Hypothyroidism, and I was recently diagnosed with Parkinson's Disease.
I had a friend who had Parkinson's Disease. His wife had to go to monthly staff meetings and she asked me if I could come and stay with her husband so she could go to the staff meetings. I stayed with him over a two year period. It was a real eye opener for me to see him slipping away. When I was diagnosed with Parkinson's Disease it hit me pretty hard because I witnessed my friend during the last 2 years of his life.
I'm making changes in my plans for the future now, after watching my friend's last two years.

Hello @barryl and welcome to the PD support group on Mayo Clinic Connect. I'm glad that you found this forum. It is important to have a place to share your experiences with others. I understand that you watched a friend deal with Parkinson's and that it was difficult to see him slipping away. Please know that each person's experience with PD is different.

Some of the most important things about having PD are to combine regular exercise with the medication. This exercise should be something that you enjoy doing. Exercise combined with medication can help keep you mobile for a long time.

Speech therapy is also a good resource. As many PD patients begin to have swallowing problems (as well as speech problems), regular visits with a speech therapist can lessen swallowing problems and keep your voice/speech tuned up.

Cognitive problems can be best helped with social interaction. Group exercises and other social connections are very important. Isolation is a detrminent to neurological problems.

You can find group exercises for PD as well as speech exercises on YouTube. This will help you get started.

What are your most troublesome PD symptoms right now? What types of medications and therapies have been suggested? Have you had a referral for any physical or speech therapy?

I have serious issues with balance and dizziness causing falls, some with injury. Constipation and urinary incontinence are always a problem. Dry mouth, eyes, and skin.
I also have Ischemic Heart Disease and Hypothyroidism. All of these three diseases are caused by agent orange exposure when I served Vietnam.

I'm on Carbidopa Levodopa. My neurologist only wants me to add one med at a time. In early December I will see him again to evaluate how this medicine is working.
My heart disease limits my exercise to a few minutes.