Finally ready to pray

I'm finally ready to be prayed over at church - we're scheduled for 10:30am this Sunday. This will be a perfect time as our pastor and his wife will be speaking about Broken Dreams. They are a wonderful couple and I can't wait to hear what God, through them, has to say to me.

Learn how to cope with the major disappointments that slip into our lives!

Here's the info on this weekend's services at HPAC;

BROKEN DREAMS

November 21-22

On the weekend of November 21-22 our lead pastor, Garth Leno, and his wife Patty will be sharing their journey as parents of a daughter with severe disabilities.  Jamie was diagnosed nearly 20 years ago with a rare disorder which has affected her in profound ways.  So we’d like to invite friends, family, and neighbours to join us for an intimate journey of the soul.  While the Leno’s “broken dream” relates directly to their daughter who is handicapped by Rett Syndrome, we recognize that many people in our world today are living with broken dreams of different kinds.  We believe that our weekend services on November 21-22 will be a great source of encouragement and hope for anyone who is struggling to understand why God allows stuff like this to happen.

Many people who might be interested in this message of hope are already involved in a faith community on Sunday morning.  So we’d like to invite them to come for the service on Saturday evening, November 21, at 6:00 PM. 

Many of us know families or individuals who are struggling with learning disabilities, cancer, autism, divorce, cerebral palsy, or the premature death of a loved one.   Most of us know people who are living with a broken dream of some kind.  We believe this particular weekend ministry will be a source of great hope and encouragement to them, and everyone is welcome. 

So please invite friends and family to join you at HPAC on Saturday November 21 at 6:00pm or Sunday November 22 at 9 or 11am.

Exercise, exercise, exercise

I went back to work on a 6 month contract, AND I'm trying to complete some programming projects that I picked up while I was laid off - so I've gone from a lazy summer to a crazy-busy fall.

My frequency of exercise had gotten so bad (infrequent) that I even started to notice symptoms getting significantly worse. There were times at work when my hand would shake so much I would need to put it back down on my lap and concentrate on relaxing before 'trying again' to type.

I knew I needed to get back on the bike. I've been more consistent in the last few days than I have for the previous month, and I can definitely feel the difference.

A great friend at church has offered to help me commit to getting up in the morning on time to exercise. It's such a blessing to have good people 'in my corner'.

I've been asked - do you bike indoors or outdoors? It's indoors - this is my bike;

With my balance, it's best to be low to the ground. It's also a big timesaver as I don't have to get dressed or even put shoes on to get started - and I don't need a helmet  :-)

Here's my biking chart from runningahead.com. Notice the big gaps. I'm targeting consistency as well as pace for the next while.

Typos

I'm goig to try typing without correcting and see what comes up. I'm finding I spend alot of my time lately sjust fixing my mistakes or typos. Hmm, of course it's not happening now that I'm determined to have you see the "rwaw" datea. Maybe another time I can put on a real show with all the double hits and taranaspostions etc. I just wanted to put "down on paper" the reason for someof my frustratioiin. Right now, it's actuaally not so bad thoough. Strange,eh?

Corrected below;

I'm going to try typing without correcting and see what comes up. I'm finding I spend a lot of my time lately just fixing my mistakes or typos. Hmm, of course it's not happening now that I'm determined to have you see the "raw" data. Maybe another time I can put on a real show with all the double hits and transpositions etc. I just wanted to put "down on paper" the reason for some of my frustration. Right now, it's actually not so bad though. Strange,eh?

Exercise gaps

It seems even unemployed people get busier in the fall. I biked today, but the last time was a full week ago. In some ways it feels like starting over, but I did have some good 'sprints' and ended up with a respectable pace.
Tomorrow I have an interview in Waterloo, and Friday a meeting in Troy so those two days I won't be biking either  :-(

CoQ10 Screening

Today was my "screening" visit for a CoEnzymeQ10 study I hope to be participating in. Basically it involved handing over some blood and urine (mine), and answering some questions. Some of the cognitive questions are really indicative of where PD has the potential to take someone (along the dimentia route). Questions like; what city are we in? what day is it? (actually, that was a tough one - I never know what day it is). My brain was working pretty well today so I got 31 correct answers (out of 31 questions - woohoo!).
If there's anything drastically wrong with my blood or urine, I could still be excluded from the study - but then would be working on fixing some other health problem :-)
To stay in the study, I can't start any symptom relief medication (the study lasts for 16 months) - so I'll have to get more comfortable with this shaking, and get my exercise level up to higher levels so that "runners high" can kick in more often. Dropping out of the study would be a big waste, as I would still be included as one of the 600 study participants but my results wouldn't be used.

Posted this in the PLM (patientslikeme.com) forum today

The end of this story is the most important part, if you want to skip ahead.

I've been sedentary for a very long time, and just started biking in the middle of May on a recumbent exercise bike. I knew I was going to be home full time (permanent layoff) starting in June, so I started increasing my biking distance. I eased up very gradually - it took me 3 weeks to go over 1.5 miles in a session. Even up until last week I hadn't done more than 5 miles in a session. I was getting frustrated, I knew I was getting stronger and more stamina, but I wanted to be able to pick up my pace.

I was intrigued when I read about the results from tandem bike riding, and I really wanted to be able to do a good run at a higher pedalling rate.

At the same time, I wanted to start running instead of walking - but I hadn't run in years (not even a few steps). I read about the Couch to 5k (c25k) program and thought I'd try that. The first day convinced me that running was not going to be my thing (it HURT!), so I switched the running portions to brisk walks.

I still wasn't able to speed up my biking pace though, in fact - I was slowing down. I needed a new approach. I took the c25k program and applied it to my biking. I turned down the resistance on the bike so I could keep up a higher speed - and when the music was done - I had gone 6.5 miles (at a respectable average pace)! I felt like this combination was going to work for me.

But here's the best part – this morning when I woke up my arm felt significantly less stiff, and it didn't have any tremor. I'm not on any meds yet, but it felt to me like I'd gotten a shot of dopamine. Now I'm so motivated – I did 7 miles on the bike this morning, and my pace was better than yesterday!

c25k on the bike

Slight exercise modification; pushups have gone to 16 reps, and I've eliminated the reverse leg lifts. I think my back feels better for it.
I decided to try to pick up the pace on the exerciise bike, so I listened to the c25k audio and used the running portions to speed up. I turned down the resistance, as I've read that PD patients get a good effect from higher rpm's. I ended up going 6.5 miles (a new record) at a pace of 3 minutes per km.

Couch to 5k (c25k) Week 1 Day 1

Today was the day I found out whether I could run or not. I started the Couch to 5k program. The first week involves alternating running for 60 seconds and walking for 90 seconds. It starts with a 5 minute walk to warm up before the first run.
I stretched, started the walking portion, and psyched myself up to run. I can't really remember, but it feels like years since I've done any kind of a run - even for a short distance. So I wondered - can I run? Well, I found out I can - sort of. My left leg was doing a great job, but my right leg was doing a very poor job of making any kind of a soft landing. It would pretty much "slam" down. I thought; "I'm going to break something". So, bottom line - I ran 60 seconds. Most of the other "runs" were a brisk walk with a long stride, and some were breaks. By the time the recording of Christian music I had downloaded was done, I had gone 2.5km. I switched to my regular programming and walked home. My total walk was 4.7km. I'm not sure I've completely given up on running, but I'm just going to stick with the brisk walk in place of the run segments for now, and see where that takes me.

Daily Exercise Update

The 12's have moved on to 15 --> 15 pushups, 20 crunches, 20 leg lifts, 15 reverse leg lifts, and 15 more pushups. Then 5 miles on the exercise bike and .... here comes the commitment; I downloaded mp3 files with Christian music to guide me through the Couch to 5k program. Now it remains to be seen if the headphones will stay on my head while running.

Nine weeks from now I should be able to run 5k.

Exercise

This article emphasizes the importance of exercise. I'm working on a routine of 12 pushups (working up to 20 on all the twelves), 20 crunches, 12 forward leg lifts, 12 reverse leg lifts, and 12 more pushups. Then I do 3.5 miles on the exercise bike, and intend to go for a 5km walk.

I want to be positive about approaches that avoid drugs, but the cynic in me wonders what's really going on with Dr. David Heydrick. I got his name from a mailing from Robert Rodgers - which I read but am very skeptical of. David has an article here (pdf link); where he's happy about his DBS, but other articles only seem to be promoting exercise. Maybe he's like the rest of us; grasping at straws looking for relief from PD.

I'm going to stick with exercise, and try to keep an open mind. I've started reading this ebook (pdf link), and we'll see where it takes me.

I'm hoping to participate in a CoQ10 study, which would involve NOT being on meds for 18 months, so the rule from Dr. Janice Walton-Hadlock at pdrecovery.org won't be broken.

Internal Tremors

I wasn't exactly sure what people were referring to when they mentioned internal tremors, but I think I'm getting an idea. Last night my hand (along the meta-carpals area) was 'twitching' mostly internally; so the best way to describe it seems to be; 'internal tremor'.

It sure doesn't help trying to get to sleep. Unlike the leg and arm tremors I have, the internal tremors don't stop when I'm laying down.

Eating

I'm getting lazy with the use of my right hand, and I'm starting to eat left-handed more often. I need to focus on "getting through it". I wouldn't want my arm to fall off :-)

New links - from Monica

I got a few new links today. Thanks Monica!

See the "added 20090717" tab to see what's new.

She also sent this link, not specific to Parkinsons; www.emofree.com

Support groups

Until Wednesday, my primary source of support from other PD patients came from patientslikeme.com

It was good to meet other patients face-to-face and to hear their stories.

Some of the great points I got;

• we all have the same disease
• it affects each of us differently, progresses at a different pace, and is treated differently for each of us
• only really nice people get Parkinson's disease :-)

I was inspired to take part in the SuperWalk. I'm looking forward to participating.

Parkinson's-related web pages

I was given a big chunk of these by a PD caregiver (thanks Susan for this list). I will add to the list as I find more.

Follow this link to view the list.

Note, the list is just about everything I've found so far on Parkinson's; Some I agree with, some I disagree with, and some I find "hokey".

ESC

Being a geek, the first thing I think of is the 'escape' key, but - that's not what this is referring to.

It's Embryonic Stem Cell research.

Since I've been diagnosed, I've been reading all I can about Parkinsons disease. That includes blogs from people with Parkinsons (referred to as PWPs). I read this posting; "I Have Parkinson's Disease - Why Are State Legislators Trying to Withhold ESC Research?" and I felt compelled to comment. The comments are moderated, and I neglected to keep a copy of my comments in case they didn't get published. Of course, they didn't get published.

I shouldn't be surprised. If someone submits a comment here that I find offensive, I'll decline to publish it. That's my right. This is my blog.

I still want to comment on the article though, and I have other rights. I have the right to publish my opinion here.

So I will.

Here's my stand on ESC research;

Life begins at conception.
An 'embryo' is a human life, and should be protected as such.
The ESC term is just a way of 'sanitizing' what's really happening; an unwanted human life is destroyed for research.

I would rather die without being cured of Parkinsons than be cured at the expense of another life. I'll have to be careful in the future which treatments I will allow to be used on me.

Judi and I watched the John Travolta movie "Phenomenom" recently. The end of the movie has a related sub-plot; the main character is going to die within days, and doctors ask for permission to research his brain while he's still alive. The potential good for mankind is enormous; the doctors would learn a great deal about the operation of the brain. And the patient would die. When the character refuses, the doctor goes to a judge and has him declared incompetent.

The character ends up escaping, and dies "at home", on his own terms.

We need to ensure that we make the same decisions for embryos, instead of making decisions for 'the good of mankind'

Exercise tactic change

I'm looking at all the exercise I've done so far as a warmup.

I gave blood on Thursday so I didn't do pushups on Friday, and ended up not doing any exercise. Friday I was reading an article I found on "patientslikeme" that talked about good symptom relief after vigorous exercise (80-90rpm on a bicycle). This morning I tried pushing very hard for one mile of biking. I did a 2:20 km pace rather than the 3:45 I had been doing. It was hard and I had to slow down a couple of times. I'm going to try adding to the distance daily. I tried to increase the pace on my walk too, but only managed a 12 minute / km pace - about the same as I've been doing.

I want to get to the point where I can notice the symptom relief mentioned in this article.

Starting to exercise

I've actually been "warming up" for about a month and a half, trying to work my way up and develop good, consistent habits.

Now, I've found a place called runningahead.com to record biking and running (even though I just walk). I love to record my results, so the site is a good resource for me.

I'm noticing more and more how my right arm doesn't swing while I walk. I'm trying to increase my walking pace, but I'm finding that I tend to settle back to a slower pace too easily. It's like having only one arm swinging isn't conducive to a fast pace. I'm going to try using a "hand grip" while I'm walking to give my right arm something to do.

Movement Disorders clinic - first visit

First off, I had a friend from church along for the ride. It was great to have someone to talk with on the way there, and especially to "debrief with" on the way back.

Dr. Jog is the head of the clinic, and he did my evaluation. There's a wide range of tests that he took me through some simple physical tasks;

• follow his finger with just my eyes
• point at his finger and then my nose, back and forth while he moves his finger
• a number of activities with first one hand and then the other, some resistance testing, and some "looseness" testing where he would move my arms while I (attempted to) relaxed
• He observed me walking, recover from being pushed off balance, and demonstrate an activity (blowing up a balloon) that he told me later was to evaluate cognitive ability.
  

Although he said that many of my symptoms were atypical for Parkinsons' (PD), he felt still that a diagnosis of PD was accurate for me. He has evaluated 15,000 patients, and there's no consistent set of symptoms in all people with PD.

He gave me two options;

1. Start taking medication to give me symptom relief. It's my choice, and for me to decide if the symptoms are severe enough that they keep me from having the quality of life I need or prevent me from working.
2. Participate in a study for a drug that may slow down the progression of PD. The subjects are in three groups; patients getting a high dose, a medium dose, and a placebo.
   

There would be no point in being in the study if I felt I would need to exercise option 1 within the next 12 to 18 months. Subjects in the study are patients not taking drugs for symptom relief.

I'll see the doctor in about 3 months (when some of the current stressful situations are over) and let him know whether I feel I can be a part of the study.

A long day with a late lunch

Judi had her liver surgery today. We were at the hospital at 6am. I ate breakfast before we left, then had a butter tart and a granola bar by about 10am. I drank a bottle of juice also.

I expected Judi's surgery to be done by 2pm, and that I would go get lunch when I knew she was out of surgery. I was talking with our pastor while waiting, and I couldn't get my leg to stop shaking. I was feeling pretty hungry, but I really wanted to know Judi was out of surgery. By about 3:45 I knew I really needed something, so I drank a coke. It helped quite a bit.

So, I'm finding that I'm also much more susceptible to shaking when I haven't eaten in too long.

Sometimes it's a few steps back

Generally I've been feeling like my symptoms are progressing forward, always forward. I've been sick with a fever for the last few days, and really noticed how my hand would have a long lasting (I guess 2 to 3 seconds) tremor after I would use my arm.
Today, I'm feeling a lot better (no more chills, etc. from the fever) and I'm feeling much more "relaxed" in my arm, leg, and face.
Maybe because it felt so bad for the past few days, I'm noticing even more when the symptoms take a few steps back.
My hand isn't completely still, but I'm noticing that my leg and face feel much better - and it feels great to have a feeling of "normal" for a while.

Coffee is out

Tuesday night I was up late. Wednesday morning I paid for it, and I was pretty tired driving to work. I had a coffee right away - and promptly paid for that. I was shaking a lot, and it was difficult to type. I was getting a lot of double hits on I and O.

Thursday, I had outplacement training. Just standing talking with people, if my right hand was free it would be shaking. I'd have to rest my hand on a chair or put my hand in my pocket to get it to be still.

The Next Phase of my Career

I received notice today. I am fortunate to have the boss I do; he fought for me to get 3 months notice and he gave me the freedom to search for a job opportunity outside and inside my current employer.

The automotive industry has been unstable for the last few years, and I've managed to dodge this bullet for a long time. Now with the whole economy transitioning, more bullets are flying and it became difficult to justify maintaining resources that don't have a clear impact on improving the bottom line.

I'm going to use this forum to collect everything I've been reading for the past few months on job seeking, personal branding, social networking, etc.

(found this post in my drafts - finally publishing)

Saving Passwords

I've always been against saving passwords, even using my own computer.

Tonight, I changed my mind. Typing passwords has become too much of a bother, as I'm making lots of typos.

Judi and I tried to get some video of my hand shaking while I'm eating, but the shutter speed on the digital camera seems to be too slow to capture it properly. We'll have to try again with better lighting.

Typing

Typing can be a bother, depending on how high I'm lifting my hands. I never can tell how much my hand is going to shake.

Yesterday I started typing and my hand shook very noticeably and I had to pull my arm away from the keyboard. There was no warning, and I pulled my hand back to my lap to get it to settle down.

Right now, it's hardly shaking at all. It's unpredictable.

I'm finding at work that it helps me to put a squeeze ball in my hand if I'm just clicking and not typing.

Shivering

This morning at work I was standing talking with someone and my arm started shaking so much it was like I was shivering in the cold. It's the first time that happened without any assignable cause.

I'm finding that if I'm cold, my right arm will shiver much more and much sooner than my left arm. If I'm exerting myself, it's the same sort of thing, but today was the first time my arm shook like that with no apparent cause.

New sensation

Had a "new sensation" last night.

Anyway, the sensation was actually a feeling of my arm being "normal". I could actually feel something like the waking up after your arm has been asleep (without the pins and needles feeling). Still today, my arm has that warm kind of feeling - even though the shaking is not gone.