To be fair, my poor husband is suffering a whole lot more than I am. He has Age Related Macular Degeneration (AMD), and Parkinson's Disease (PD), though we have no idea what stage.
According to Parkinson.org, Parkinson's disease (PD) is a neurodegenerative disorder that affects predominately the dompamine producing ("dopaminergic") neurons in a specific area of the brain called substantia niagra.
This is what AMD does to your eyesight:
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| From ophthalmology24.com |
It took us five years from when we first noticed symptoms of PD, to the point where the medical profession paid enough attention to us, to have him tested. During that time his doctor told him if he could hold his hand still against a flat surface, the tremors were not Parkinson's. He made it clear that he didn't believe my husband when he said he was constantly fatigued. Or perhaps he suspected he was partying too much. When his doctor finally agreed to refer him to a neurologist, we told her we suspected Parkinson's. She referred him to a neurophysiologist. He diagnosed mixed anxiety and depression.
Now, to be clear, tremors, extreme fatigue, anxiety and depression are all symptoms of Parkinson's. That was four years after we had diagnosed it ourselves but couldn't get traction from the experts. One year later, we returned to the neurologist for follow up. Finally, she said she suspected Parkinson's. We said we had already told her that a year ago. She flatly denied we had ever mentioned it.
So, the full battery of testing that should have been performed five years earlier, finally agreed with our diagnosis. He was then put on a bunch of medications. Most were to treat the symptoms. Parkinson's has no cure at the time of writing. And, with the damage that has been done to medical research in the US recently, it's unlikely there ever will be—unless the Chinese come up with something.
One such medication was carbidopa levodopa, which increases the dopamine in the brain; this should help to control the tremors which had become very bad, and also body stiffness. Unfortunately this medication has horrible side effects.
The poor man spent the next six months with constant nausea, exhaustion, depression and dyskinesia—jerky, uncontrollable movements. So, the medication to stop the tremors increases his fatigue and depression. While it does control the tremors, it has caused him to have uncontrollable jaw movement. That is, he constantly moves his lower jaw from side to side. While the nausea has eased, it hasn't ceased completely. Some days there are no side effects and other days he is totally incapacitated for hours after taking the medication.
Now, if all that seems to be overwhelming, add to it the separate issue of Macular Degeneration (AMD}. There are two types of this disease, wet and dry. My poor husband has both, one in each eye. Again, there is no cure for this disease, though, as with Parkinson's there is a lot of research being done—was, before it was all shut down. Dry AMD is the least serious, and can be slowed down with a heavy mixture of vitamins. Wet AMD is extremely serious and currently he is receiving regular injections into his retina—yes, in his eyeball—to try to minimize the impact.
The impact of AMD is loss of vision, starting in the center of the eye. One example I read to explain it, is if you look at a clock face, you see the numbers but you can't see the hands. Not a lot of use? Luckily my husband had the good sense to realize that it was time to stop driving. Not before it became somewhat terrifying. He would sometimes stop suddenly in the middle the road, because he saw something in front of him that wasn't actually there. Worse was when he didn't see things that were there, or didn't see traffic lights, particularly scary when they were red. For more information on AMD, click here.
So, I went from white knuckling it, yelling 'Red' to getting a driving lesson every time we went anywhere. Thankfully, after a year, it would appear my driving has 'improved' sufficiently, or maybe the poor man's eyesight has deteriorated so much he can't see where we are going.
The driving lessons are the least of my problems. The mood swings are hard to deal with. I never know when he is going to be deeply depressed, or wildly angry. And I am all he has. Well, 99% of the time, I am the only person he sees. I have a large, caring family. Unfortunately they are scattered thousands of miles away, almost all in other countries. He has a very few family member living close by, and they are too busy with their own lives. So we spend all day every day depending on each other, attempting to battle our way through the symptoms, knowing they will only get worse.
Before you say it, I did try to get him to agree to trying a support group, He refused. He has never been a social body, and he believes a support group would consist of a group of people as miserable as we are, sitting around whining about our problems. I know if we lived closer to members of my own family, we would get the support we need. But that would require a huge change in lifestyle for him, and in his current condition, change is the last thing he wants to consider.
So, how am I suffering. Well, I love my husband and it breaks my heart to see him suffer. To hold him while he cries, or keep my mouth shut while he rants and raves, or threatens to kill himself. Advice I keep reading is 'take care of yourself". Exactly how? As he needs more and more care and attention, and I am the only one available to do that. What do I do? I can't just abandon him for even a couple of hours. Particularly as he doesn't do well being on his own.
Apart from that, I have lost the man I married. PD and all of it's many side effects, has a impact on the victim's personality. It's inevitable that the impact of so many unpleasant symptoms plus the slow deterioration of the dopamine in the brain, is going to cause changes to the way a person thinks, feels and reacts. Sometimes he goes for days without saying more than a few words, to me or to anyone else. Other days he snaps and snarls at everything and everyone. And, getting rarer, occasionally he is his old cheerful self.
The battle against two diseases, both of which we know will eventually win, is soul destroying. And if we're not careful, will destroy not just our souls, but also our relationship. And now, with the political mayhem in the Disunited States, research into these diseases has been halted, the threat of cutting Medicare and Social Security, plus tariffs on pharmaceuticals will most definitely finish us off.
