Which symptom is most challenging to navigate?

[Mary Beth Skylis]

Parkinson’s can come with an array of different symptoms. My dad struggles a lot with freezing episodes. But tremors and dyskinesia are extremely tough symptoms to navigate as well.

Which symptom is most challenging for you to navigate? Have you found any ways to minimize their effect on you?

[fred kanter]

For me balance is the most difficult.  Using a cane has been helpful but when I turn when standing still I can lose my balance.

[Jo S.]

For me, it’s chronic constipation. It’s a never-ending daily struggle.

[Lou Hevly]

Have you tried Kayam tablets? My wife (63 years old) swears by them. They’re on Amazon.

[Alan Berry]

Hi Lou,

I have switched from a laxative which was itself an improvement on nothing.

Now I am taking Weber Naturals Probiatics. 30 billion active cells. After a three day delay I am now performing daily.

Purchasing through Amazon I get 30 pills for about $12 + tax Canadian. Dosage only one pill a day.

Alan Berry.

Hope you get the same results Lou.

[Haddon Bates Estabrooks]

Non-motor: depression, anxiety, apathy, fatigue.

[Richard]

For me its my freezing of gait and associated falling due to the loss of balance when I’m frozen. No medication has helped and I’m nearly housebound after only 3 years.

[Karla Burkhart]

I have always been very active and loved hiking and walking. I have been having an increasingly difficult time with stiffness. At times I feel like the tin man without an oil can. I can no longer do many of the activities I enjoy. I retired early from teaching elementary school not knowing what the problem was but knowing I was too awkward and off balance to continue. It was 5 years later I was diagnosed.

[Tim Brindley]

A-Typical PD is what I have.

Thankfully my wife has arranged the house to make it the easiest it can be for me.

i constantly freeze up and fall just about everyday yet I’ve been lucky as I haven’t broken anything except a cup.

I’ve gotten severely worse since the beginning of 2022

I was a strong, energetic, active individual until PD struck.

[Richard]

Hi Tim

your case of Parkinson’s sounds exactly like mine. I was originally diagnosed with atypical Parkinson’s but it is being Treated with the same drugs that are used to Treat normal Parkinson’s. Unfortunately, the drugs don’t seem to work For freezing of Gait And most researchers consider this a problem to be worked on.

• This reply was modified 1 week, 1 day ago by Richard.
• This reply was modified 5 days, 23 hours ago by Kevin Schaefer.

[Richard]

Hi Tim

your case of Parkinson’s sounds exactly like mine. I was originally diagnosed as atypical Parkinson’s but it is being Treated with the same drugs that are used to Treat normal Parkinson’s. Unfortunately he drugs don’t seem to work For freezing of Gait And most   researchers consider this a problem to be worked on. 😊

[Tim Brindley]

Richard

l know exactly what your saying about the drugs don’t work as I’m going to the Mohammad Ali center for treatment and they have told me they have never seen a case advance as rapid as mine has.

Prognosis is I won’t be walking by the end of this year.

like Cynthia stated I lose tract of my thought train real easy where as before the on slot of PD I had a memory like a computer.

Just taking each day as they come some are diffidently better than others.

[Paul Hojuson]

Tim: my case is the same. I’ve had a rapid decline in the last year and anticipate being in a wheelchair by Jan 1. It was hard enough to accept the use of a cane for balance purposes and now a wheelchair! My neurologist has no further suggestions; my social worker has suggested a home aide/convalescent care and my dyskinesia is driving me crazy. Out of frustration, I asked to speak to a psychiatrist to at least get me a medication so I can feel good about my condition. Lexapro has helped @ 10mg twice/day.

Participating in Rock Steady Boxing, daily walks and stationary bike rides have also helped maintain my independence. I’ve come to the realization, there is no good solution and only I can be my own advocate. To give up is really the start of the end and I just won’t accept this.

[Don Harris]

Muscle atrophy is my main concern but I don’t know whether PD is the culprit.  Whatever, everything is a lot heavier than it used to be!

[Cynthia Johnson]

When conversing with people I’ve noticed it’s becoming harder to complete my thoughts. I feel like it’s becoming more difficult to complete thoughts and I struggle trying to complete sentences and articulate the right words…..In trying to communicate I lose my train of thought very easily.

[Ruth Gravitt]

My sister has Parkinson’s and her orthostatic hypotension/dizziness is making her suicidal. Please give any helpful info!

[Tim Brindley]

Ruth does she have any pets   I and others on this site have pets and I can state for myself they are life savers.

• This reply was modified 6 days, 12 hours ago by Tim Brindley.

[Ruth Gravitt]

She can’t manage pets now. I was thinking of medication.

[Tim Brindley]

I also have a problem with my speech, my wife calls it mush-mouth.

I’ve lost all the sound output in my speech too as in my head it seem like I’m yelling and in reality I’m whispering. Nothing wrong with my lungs but I run out of air when I’m talking and that also screws up my speech.

[Alan Berry]

I have weak legs, frequent fatigue, restless legs when sleeping, painin legs and arms but I can tolerate all of these without medication.

My worst symptom is that my brain has deteriorated so my concentration is poor and it is impossible to join in group conversation since I am unable to grasp what is being said. Lastly my memory is ridiculously poor, sometimes I can’t even remember my grand-children’s names.

Alan Berry.

[Mary kelly]

Cognitive issues

[Author]

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