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.…[Read more]

There are 2 ways that I’ve personally found effective: First, ignore what everyone else says or thinks, their opinions are not relevant for the most part; and, second, be involved in some activity to such an extent that I forget all about Parkinsons’.

I keep on telling myself that I am unique and the opportunity to do anything or go anywhere my…[Read more]

It’s been my experience, that those around me seem to be the most concerned that my sleep time is rather short. Personally, I don’t consider this an issue and I use this time for every creative activity possible that I can’t complete during daylight. There are too many distractions during the working day to allow uninterrupted personal time. I…[Read more]

The only way that I have found is to try to find that state of flow either reading, painting or listening to music–all activities I can do on my own. When stress occurs when I’m out in public and someone complains that I’m not walking fast enough or blocking the aisle, that’s a different story and I tend to freeze when walking. There is no real…[Read more]

It has robbed me of my independence and has forced me to confront my mortality in ways I never expected. I had a wonderful lifestyle, now I have to develop in new ways—more challenging and frustrating. I have to rely on other people more. I have to pay attention to finances more. I have to be more assertive and patient to do almost anything.…[Read more]

I agree with all of the above placing heavy emphasis on the observation that it just takes longer to do everything and skill-demanding tasks are constantly in a re-learning mode. I may accomplish a task one moment and then have trouble 1hr later doing exactly  the same thing. It’s easy to lose  any optimistic outlook if tends like these get more f…[Read more]

6 months ago I started painting out of sheer boredom. It has developed into a serious hobby despite the challenges I face with minor tremors but somehow with relaxation, the tremor stops and I’m successful in my endeavors. This activity has provided me with the greatest sense of “flow” I’ve haven’t felt since running marathons years ago. The…[Read more]

Yes, both myself and one sister tested positive for LARRKS2 mutation. To our knowledge ,no one else has been diagnosed with Parkinson’s.

It’s really difficult to accept the fact that I’m physically aging so quickly. In the past year, I’ve noticed significant changes in my ability to walk even with the medication which may have worked well one day and not the next. I don’t think there is any good solution other than complete relaxation in such moments and then try again. Also…[Read more]

This has been a very creative year intellectually. I’ve written 2 books to teach my grandkids about art and have started to learn to paint with acrylics. My PK symptoms have gotten much worse and have taken up Tai Chi to help with balance issues. I had been very physically active but everything has gotten worse so as a last resort Thai Chai has my…[Read more]

Hi Beth: I have similar problems and been on meds for 5yrs. Success is irregular but I have found that my best and productive time is from 1-2AM to 12 noon. Everyone seems to be worried that I sleep only 4hrs max but I wake up fully relaxed and I use this early morning time for reading/computer email/painting/writing etc. I may take a nap during…[Read more]

I would like your thoughts on how to keep a positive outlook. I try to keep everything the same but my body just wont cooperate many times and its hard to escape the realization that there is a continual deterioration. There has definitely been a life style adjustment, especially in the last few months with isolation as my primary activity.