[paul-hojuson]

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 mind takes me. I want to hold on to an optimistic outlook as my personal mantra, set goals and go for it, whatever it may be.

[paul-hojuson]

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, write, draw, paint etc. This “problem” has been one real benefit of Parkinson’s.

I use an appliance for sleep apnea. It works to the extent that my sleep period is deeper and unbroken. I wake up refreshed; however, the duration is still the same at 3-4hrs top.

[paul-hojuson]

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 solution. I would like to fight back but a have a tendency to apologize for my disability and then just wait out the period.

[paul-hojuson]

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. Every activity takes twice as long and planning always seems absolutely essential.

[paul-hojuson]

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 frequent and  there is a noticeable deterioration. Those around us should be aware of increasing levels of frustration and anxiety precsisely because of the demands we place on ourselves. They also should realize that we are not the same person that we were 3,5 or 10 yrs ago. This is a hard fact for even me to accept especially when my achievement level/ expectations are so  high.

[paul-hojuson]

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 mental challenge has given me opportunities beyond my expectations. For anyone with physical limitations, next to writing about art, this hobby has given me hours of satisfaction and enjoyment.

[paul-hojuson]

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

[paul-hojuson]

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 realizing that I have to learn to walk as if it’s a new experience everyday helps otherwise getting frustrated only leads further into depression.

[paul-hojuson]

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 attention. PT only made matters worse.

[paul-hojuson]

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 the day and sleep 1-2hrs but again I’m not concerned. Ambian was not helpful. Neither was melatonin nor benedryl.

I am no longer working and am doing more things now than compared to before retirement. I only  wish I could find a solution to that off period from 2-5PM. Even though I take my meds, they appear to have no effect.

I am experimenting with mannitol daily (too soon for any results) and I am using a gamma wave brain simulation device daily (such has been shown to reduce Louie  bodies in lab experiments).

I get the impression that my doctors are at a loss to stabilize my problems so I’m on my own. By the way, I’m 69 and have a LARRKS2 mutation as does my sister.

Paul

[paul-hojuson]

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.

[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.