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.