Massage

Hi folks.

I have had a sore neck and shoulders for about six weeks now. I have been getting regular relaxation massages and finally today the therapist managed to get everything relaxed in my arms, neck and shoulders. This is the best I have felt in almost months. Here is hoping it lasts.

My meds have been fairly effective today. My speech comes and goes but that cant be helped anymore, at least until I see the specialists is Winnipeg at the end of this month.

I am off to Toronto for a couple of days to the Hockey Canada semi-annual meeting. That is if I can get to the airport tomorrow and the flight leaves. With the way the weather has been this week, one can take nothing for granted. I am home on Saturday night, so I will talk to you then if not sooner.

Sleep...

Hi folks.

Didn't sleep much again last night. I hate to sound like a stuck record but a good nights sleep would do me a lot of good. It makes the day go quite a bit better and the meds tend to work better to.

Got some sleeping pills today so maybe it is time to pop more pills. I don't like taking the extra pills unless I have to but I think it is time.

Its Monday..

Hi folks..

Well, it's Monday.

Yup, it's Monday and I don't have a lot to say other than that it has been a pretty good day. I have felt pretty good and did some painting in the front foyer. I didn't sleep very good last night and only got about 6 hours of sleep. That is probably lots for most of you but not enough for me. Oh well, such is life.

Meds have been fairly effective today but my balance is still very poor. I hope you don't mind seeing me walking with a cane because it happens more often than not.

My implants have been set at 4 milli-amps on the left side and 3.8 milli-amps on the right side. My voice is controlled by the right side and the setting needs to get down to under 2.8 milli-amps before my speech improves. You can see where the challenge lies.

Riders Win..!!

Sunday is football day for me as I watch pretty well non-stop from Noon till 10 PM. With the Riders winning today, I have been guaranteed at least one more week of CFL and NFL. Connie works most Sundays so it is a good fit to watch football all day.

I have felt so - so for the most part today. Not good..not bad. Really tired which is unusual because I have been sleeping better lately. The meds still come and go depending on whatever determines if they work or not. i am looking forward to my appointment in Winnipeg at the end of the month, as much for getting a second opinion as anything else.

At least I have not been as depressed as before, which is a very good thing.

That all for now.

November 13

Not a bad day. Went to JayCees for breakfast like I do most Saturday mornings. Then off to Swift for paint for the front foyer.

Never got around to painting because I cooked dinner, just crepes, for Connie and her sisters. Her sister Florence is out from Kamloops to visit so I thought that because Connie is working the night shift, I would cook dinner.

Watched the Leafs lose, which was made all the sweeter by the Habs winning.

Felt pretty good today for the most part. Walking without a cane is becoming more of a challenge because my balance is getting worse.

That is it for today.

Daily Posts

Hi folks.

I am going to start to do a daily post, even if all I put in is what I have done that day, how I am feeling etc.

This of course will require that I remember to post everyday, which likely wont happen but at least I can say I tried.

Later.

Tune up...

Hi everyone.

I went for a tuneup last Friday and I must say it was one of the best ones yet. My left side, which has usually been the best, has advanced quite rapidly and now has overtaken the my right side in terms of needing the implants to control the symptoms. My speech hasn't improved but I am talking slower. Go figure. Anyways, the dyskenesia is pretty well gone and I do feel better. The doctor had to turn off the implants for a few minutes to check the battery and connections so I got a taste of what it would be like if the implants were not there and it wasn't nice. Believe me, I won't complain about not being able to speak clearly again. Not when the alternative is a wheel chair.

Take care and we will talk soon.

Its time...

HI everyone. It has been a long time since I have talked to you all but then it has been a rather uneventful summer. My Parkinson's has advanced steadily, especially on my left side, but the implants have done a good job with the symptoms. My speech hasn't improved but that is to be expected.

After considerable soul searching combined with many conversations with friends and family, I have decided to not seek re-election in any capacity at Hockey Canada and retire after 18 years of involvement at Hockey Canada, the last 12 as Officer. My reasons are many and varied and for the most part personal. I will continue until the Annual General Meeting in Calgary in May of 2011, but after that...

Like I said, it is time to move on.

Stuff

Hi folks.

It has been awhile since I talked to you so I thought I would update you on a few things.

Connie and I attended the Hockey Canada Annual General Meeting in Montreal at the end of May and it was a very good weekend. Despite the fact that the weather in Saskatchewan was around 2 degrees and snowing, the weather in Montreal was spectacular with highs of 35 degrees and no wind. For whatever reason I was able to keep my implants set quite low so my speech was actually understandable. But alas, it didn't last and after being home for a few days I had to turn them back up and my voice was back to its old slurring self. Oh well, it was good while it lasted.

I think we finally figured out why I have felt so lousy from November through till April. The start of my downward spiral coincided exactly to when I received my H1N1 flu shot and got worse until mid January when I slowly started to pull out of it. One thing I know for sure which has been confirmed, is that I contracted a mild case of bells palsy which fortunately was caught early and treated by my family doctor. Given the number of people who in this area who got sick, some quite seriously as a result of the flu shot, I consider myself lucky.

June has not brought anything to exciting. The weather has finally smartened up so we have been able to spend some time at Herbert Ferry Park. I have a fairly busy summer with Hockey but hopefully we will be able to spend some time at the Lake.

Talk to you all again soon.

Disability Insuarance

Hi folks.

Back in August of last year, I applied for disability benefits under the Canada Pension Plan. I had told you in an earlier post why it was hard for me to go back to work after the surgery. So far I have dealt with five different companies when it comes to disability insurance and loan disability insurance. I have only been turned down by one and that was CPP.

They say on their website that every application is dealt with within 6 months. Well, after 7 months they told me I didn't qualify because I volunteer for Hockey Canada. They say they spent 7 months to decide because they needed to talk to doctors and neurologists to make sure what ever decision they made was fair. They did all that and I guess couldn't find a good reason not to honor my claim so they decided that because I volunteer 200 to 300 hours per year or 4 - 6 hours per week, I was capable of working. Forget the fact that there are few jobs in Herbert that are 5 hours per week. The good folks at Service Canada, now thats an ironic name, decided that I should be able to find such a job so my claim was turned down. Nothing like being punished for being a volunteer.

I have appealed the decision but that is not much more than a stalling tactic and a way for people to keep their hopes up. I am not very hopeful.

Drugs...

I had told you in a previous post that depression was a chemical imbalance in the brain and if you consider drugs as chemicals, which they are, any changes to your meds can cause this imbalance.

Mt body is missing dopamine which is why I have Parkinson's, but dopamine does a lot more that just control muscle movement. It has been referred to as the "pleasure" chemical in the brain and if you take it away, depression can easily result. Levadopa is the name for the artificial dopamine that I take and it a highly effective drug but the only catch is that your body will get used to it after continuous use for several years and it will lose its effectiveness at controlling Parkinson's. Hence the need for DBS surgery and all that comes with that.

The implants can easily be programmed to replace the levadopa or dopamine in your system but only from a muscle control standpoint. They implants will never replace the other things that dopamine does for your mind. The resulting chemical imbalance caused by not taking levadopa can cause severe depression along with other problems. I was under the false assumption that the implants could replace levadopa completely and they cant. Some amount of dopamine is still required by the mind and if you get that through medication or wherever, you still need it.

So there lies the new challenge. The right amount of levadopa must be taken to keep the mind intact while knowing that whatever amount you take, it is slowly losing its effectiveness in your body. The most positive result of the surgery has been that I have been able to significantly reduce the amount of levadopa my body needs and thus making sure it will stay effective longer. I just cant forget that my mind still needs the drug and that I cant replace it completely.

Finding something positive to say was not that hard after all.

Depression Part 2..

I don't want to dwell on depression to much because it gets to depressing. Ha ha (feeble attempt at humor). All kidding aside, it is becoming a real problem and I am at a loss at how to deal with it. I knew it would happen because depression is a side effect of Parkinson's and the implant surgery. It is a double dose I am not sure I can handle. I thought that I had gotten rid of the demons when it came to depression and Parkinson's but I guess not. I don"t know what to do.

Depression..

"Depression is not a sign of weakness. It is a sign that you have been trying to be strong for too long . Put this on status if you know someone who has or had depression . Will you do it and at least leave it on your status for one hour? Most people won't but it's Mental Health Week and 1 in 3 of us will suffer at some point in our lives . Please show your support♥"

This was posted on my facebook news feed this morning and reposted by several of my friends. If you have never suffered from depression, the statement will mean very little to you. Depression is one of those nasty things that society thinks is self-inflicted and therefore can be easily controlled or fixed. That is not the case. Not at all.

Depression is caused by a chemical imbalance in the brain that feeds off of stress, lack of sleep or whatever else life chooses to throw at you with little or no regard for your well-being. It can be treated with medication but that to can have its challenges. Depression is the first and most devastating symptom of Parkinson's Disease and if not managed properly can lead to a host of problems and in the worst case, suicide.

The next time that you hear someone is depressed, don't judge. It is likely not their fault. Instead, be supportive and understanding. It just may make the difference between life and death.

Employment and EMF's

Another question I get asked a lot is what I am doing to occupy my time. In other words, why am I not working. I guess if people think that things are back to normal than on could assume that I should get a job. For the record, I would love to be working and more importantly, to be able to work. Unfortunately, that is an impossibility and I will tell you why. They are called EMF's.

Electro Magnetic Fields are everywhere in todays world. There are weaker emf's in things like low voltage fluorescent lights, cell phones, appliance motors and televisions. There are moderate emf's in microwave ovens, electric motors, security lighting (fluorescent) and low end home security systems. There are high emf's in airport screening equipment, high end home security systems commercial cooking equipment and MRI's in hospitals. Because my implants work on the principle of electrical impulses being sent into my brain, any high end emf is very disruptive to the point of causing seizures, blackouts and in a worst case scenario, shutting down my bodies electrical system including my heart. I think you get the picture. Moderate emf's can cause severe headaches and disruption of the impulses into my brain. Low end emf's are non-disruptive but do cause headaches if there is continuous prolonged exposure. There are very few fluorescent bulbs left in our house and I use a headset if I am talking on the cell phone for a longer period of time. I do not go through the metal detectors in airports or into kitchens in restaurants.

So, if anybody can find me a job in Herbert where there are only low end emf's, but not very many, that is only a few hours a day (because my implants will not tolerate extended physical activity), I will gladly take it.

Perceptions..

People ask me often how I am feeling and I think it is just that I don't go out much anymore and they don't see me as often as they used to. I always struggle with what an appropriate response should be because I should be feeling better than I am but I am not. I want to be honest but at the same time, not be negative. If you constantly answer that you are feeling lousy, people will soon tune you out and you cant blame people for that.

So how am I feeling? Honestly, not the best. I am trying to find that delicate balance between my meds and he implants and it is turning into a real struggle. It could be easy, crank up the implants. lose my voice completely and go on my merry way. The problem is that your body needs a certain amount of dopamine in the system or your body will rebel. My brain isn't producing any, hence the Parkinsons, so I need to take some medication regardless. If I take to much, I get very bad dyskenesia . That is the involuntary muscle movement you see whenever Michael J. Fox is on TV.

That is the elusive balance that I am trying to find and with 29,000 possible different settings, it could take awhile.

So if you ask me how I am feeling, don't be surprised if my answer i s a little evasive. It will take some time.

Changes...

For any of you ( none of you ) who follow this blog, you will notice that I changed the title. The URL and the rest of the technical stuff all stays the same so you can still find it at the same web address.

I changed it because my life now is definitely post surgery and dealing with all that has come with having the neural simulators buried deep in my brain. My life has probably changed forever so I thought it was time to talk to you a little more about life after DBS. I am going to try and stay as positive as possible but please bear with me as there has not been a whole lot of positive things to say and it is very easy to become negative when talking about these things. Depression is a proven side effect and it is hard to be positive while depressed.

Anyways, that is the long and the short of it so be prepared for me to vent, to complain and every now and then I promise to say something nice to.

Take care.

Travel...

Hi everyone.

I was suppose to go to Belarus with Hockey Canada's Under 18 National Mens team but I couldn't make the trip. Hockey Canada decided in February that it was to risky to send me to an east bloc country because of my surgery. Given all the challenges with travel the last couple weeks in Europe, I am glad I didn't go but at the same time, I always had questions as to why I was not allowed to. I think I have found the reason and now understand the rationale behind the decision.

The biggest reason for not letting me go was that if there was trouble with the implants, it would cost to much to get to a country or back to Canada that had a health system modern enough to help me and the insurance companies would not provide insurance to cover travel costs for that same reason. I was never bitter about the decision but it troubled me because I had never had any of the problems that they were trying to avoid. Airport security personnel had never forced me through a metal detector, which could be deadly and I had never had problems like seizures or black outs. Because I haven't been feeling the greatest and because I am trying to get my voice fixed, I have spent a lot of time on the internet researching Deep Brain Stimulation. What I have found doesn't scare me but it has certainly opened my eyes.

The bottom line is that regardless how good and reliable the technology is, what I have in my head is mechanical and therefore can and will break down. I found countless articles and blogs of and about people who had experienced break downs in either the implants or the pulse generators, some as many as three years after their surgery. One particular article talked about being problem free for three years and all of a sudden one day the wheels fell off. Electrical surges and seizures were all that person felt until the problem could be fixed. One comforting fact is that the technology and reliability is improving but it will be important to stay on top of these changes.

What does all of this have to do with travel and going to Belarus? When I was told I couldn't go to Belarus because of the implants and the potential problems I could encounter, I was very disappointed but in hind sight, it was a very wise decision made by wise people. I am not out of the woods yet by any means and only travelling in Canada for the next while is the right thing to do.

Talk to you again soon.

Its Spring...

Hi there everyone.

Well, its spring and I wish I had something new to talk to you about but it is more of the same old same old. My symptoms are actually getting worse, which is to be expected given the fact that it has been almost a year since my surgery but the implants are holding their own. The only trouble is my voice has not got any better and depending on the circumstance is probably worse. I have been back to the neuro modulation clinic in Regina a couple of times and they spend a lot of time tinkering on the settings and nothing seems to help. It is getting very frustrating but I am getting to the point that I am ready to accept my lot in life and move on.

Connie and I attended the funeral of the wife of a hockey friend in Manitoba a while ago and met someone who is in the same boat I am. He had the surgery a few years ago and fought many of the same battles I am. He suggested I go see the Doctors at the Winnipeg Movement Disorder clinic as he felt they could help. Going to see a doctor in a different province than the one you live in can be a challenge at times but I think it is time to try something else or else, like I said earlier, accept things as they are.

It becomes very easy to shrink back into your own world and purposefully avoid people because you can"t communicate with them but that is not the right thing to do. The one nice thing about communicating with people in the world of texting, emails and facebook is that you can type, you don"t need to talk. That is not right either but in my situation it might be the one avenue I have left. I am tired of going into the local coffee shop and not have people sit with you because they can't understand what you are trying to say but at the same time, would I be any different? I like to think that I look at the world differently now and I am probably just more sensitive to how people behave because I am the one who feels hard done by. My how times and circumstances change.

On a bit of a side note, if you are looking for some interesting reading sometime, Google the words "Mirapex side effects". I was on this drug for seven years and went off of it in March of 2009. The reasons why would fill another blog so I wont go into it right now. It is just one more challenge I have faced in life. I have joined a class action law suit that has been filed against the drug company that makes Mirapex. I will try and keep you posted on that as well.

I know I haven"t updated this blog as often as I should but I will try and be more diligent. Typing may very soon be all I have left.