WALLY IS IMPROVING

This morning, I attended a meeting with Wally's full medical team, and he's actually rallying. The doctor explained that it's not that the Parkinson's drugs shouldn't be taken. It's that in level 4 of the disease (end stages) the drugs are no longer effective. Some doctors, in trying to retain the patient's quality of life, prescribe higher dosages but at this stage the higher dosage is actually too toxic for the body to handle. He gave the example of giving someone Tylenol who doesn't respond to the medication. So one doesn't work to kill a headache, the person takes two. Two doesn't work, so he takes three.

I apologize for any misleading information I may have posted earlier. I was stunned and angry to see how much better Wally was doing off the PD drugs. Whether his associated conditions have been side effects of the agonists or natural extensions of his PD, we really don't know at this point. All any of us can do is the best that we can--that includes doctors and pharmaceutical companies.

Wally's team doctor explained that he has removed all of Wally's agonists, sedatives and reduced his Sinemet dosage to half of what it was. This is why he is not experiencing dyskinesia (excessive shaking). The doctor also said that, if he sees Wally becoming irritated, he will remove the last dosages of the Sinemet as well. He will only give Wally what he needs to remain comfortable, and Wally agreed that, if he got a flu bug and needed some anitbiotic, he would accept it but that is all. He wants no heroics to save his life. He's ready to go into God's arms.

At this moment, Wally's overall bloodwork is better. He's gained a few pounds--up from 92 pounds to 99.7 lbs. He's back to exercising and taking a daily walk on his stroller, and he's eating everything he's served, even two desserts if he can get them. The state of his wound remains stable. This progress could not have been reached if he had remained in the assisted living residence where he was.

Thank you all for your prayers and support. It has helped both Wally and me immeasurably, and we will carry on being here for the rest of you.

Love and hugs,

Bonnie

UPDATE ON WALLY

Hi Everyone!


It's been awhile since I have given you an update on Wally.

He is less than 100 lbs., but the infection in his tailbone wound has been stabilized. Last Sunday, he asked for everyone to pray that God will take him home soon. He has found peace and is comfortable, but only because his team doctor and I decided to remove all his agonist drugs because he was hallucinating and struck the head nurse with a head blow (used his wood cribbage board) that could have caused severe injury if the thin edge had hit instead of the flat side. I knew that in Wally's right mind he would be appalled because he has never intentionally hurt anyone in his life. The only drug he is on now is Sinemet (L-Dopa or dopamine replacement) plus stool softeners.

Something amazing has happened. Those blasted enhancement or agonist drugs have caused the dystonia, the behaviour disorder and the peripheral neuropathy. He didn't inherit them along with his Parkinson's as I was led to believe, and now the symptoms have disappeared. I can actually make out what he's saying when he talks to me. He doesn't drool any more. His body isn't collapsing to one side. He's not hallucinating and acting out, and he doesn't feel as if he's going to explode just before his body goes into a horrendous spasm. These spasms have stopped too. He's very tired and he's lost his mobility, which is the Parkinson's, and so he does have to be in a wheelchair to get around. I'm wondering if the neurologists get a quota from drug companies to prescribe these agonist meds so they can carry on experimenting with new drugs, because when I reported the changes Wally is experiencing, the neurologist's nurse was polite in returning my call but it was clear no one is going to alter their treatments of other people.

For now, be aware that these so-called miracle drugs are far from that. They cause worse long-term damage than the actual disease, and in the end, rob patients of any decent quality of life. The more you can battle Parkinson's naturally, the better.

God bless you all.

Hugs, Bonnie