When Time Doesn't Stand Still

Sometimes I have to turn off the phone and put it away. Sometimes, it's so depressing, it threatens to keep me from accomplishing anything the rest of the day.

I'm learning so much from the Parkinson's caregivers support group. But sometimes, the things I read just hurt.

It was so difficult to read about all the spouses who returned to their heavenly homes during the Christmas holidays. A death in the family is difficult any time of year. But how would one possibly survive it happening during Christmas???

Thank heavens, all the group members are compassionate and caring. When my dad died, the online comments I got from so many friends and loved ones, some of whom I'd not heard from in years, really did help. They felt like virtual hugs. And I could go back and read them again when the loss began to sting again.

I hope those who lose someone they love get that same benefit...

Just hours away from the new year, and I read the tale of a woman who had to wait six months to get her husband into his neurologist. Her husband had not been out of the house at all in months due to other health issues. Getting him out of the house was a time hog, and then traffic didn't cooperate. She was 15 minutes late for the appointment, and she was forced to reschedule.

Been there, done that! I schedule an extra hour before I have to get Lizard to one of his appointments. Sometimes, that's not enough. Sometimes, I'm able to get him in the car on time, but then traffic slows me down. I can't call to report I'm going to be late while I'm driving. Lizard can't operate the phone anymore, so he can't call either. I can pull over to make the call myself and be even later, or I can just keep pushing on. This overwhelming experience has happened to us with dental appointments, general practitioner appointments and physical therapy appointments, too.

Sometimes, providers will go ahead and see Lizard. Most of the time, however, we are forced to reschedule.

Many who commented on the post told of it happening to them, too. Most who commented say they never get in to see their medical professional without a 15-minute or longer wait. A few were horrified and suggested a change of providers. And a couple said they are no longer able to do in-person visits, so they are on time for all their virtual appointments. They no longer have the stress of trying to rush someone who cannot rush anymore.

All I could do was turn off the phone and cry.

It takes longer, much longer, to get someone with Parkinson's ready to go outside the house and then into the car, and then into the medical provider's office than it would take a healthy person. Someone with Parkinson's cannot be rushed. Rushing them stresses them, which makes the Parkinson's worse, and it puts them at risk of falling.

People don't die from Parkinson's. They die from falls due to Parkinson's.

With Lizard's latest medical complication, he is even slower in response and movement now than ever before. I have been trying to get him ready two hours ahead of time. That isn't always enough.

Being in traffic stresses him out, even though he is not driving. Waiting in waiting rooms stresses him out, even when there are only two or three other patients waiting. His restless legs kick in, and that's the end of patience.

Waiting in the tiny examination rooms really sets him off. He can't sit still more than about two minutes, and being in such a small space with no room to walk around when his legs begin acting up gives him serious claustrophobia.

By the time they take his blood pressure, his heart is pounding.

Fortunately, most of his providers now understand what's happening with his blood pressure, and they aren't prescribing new meds. Thank heavens!

We can't make do without his medical care if we have to reschedule. Rescheduling is extremely stressful for both of us because we know he can't wait up to three months for another appointment. We see his neurologist every three months, and sometimes that's not often enough. His condition sometimes changes and deteriorates faster than that.

My heart goes out to all who have experienced this. I wish everyday tasks weren't so hard for any of us.

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Friday Funny

We checked into our room at the tiny little hotel halfway between home and daughter/grands, then slowly climbed the stairs of the facility undergoing massive reconstruction. The teensy lodge in a teensy little village was the only opening we could find on the holiday weekend. It had been a long day; we left town after a full day of me working at home and a hard day for Lizard with recent medication changes that literally are disastrous. The three-hour-turned six-hour drive was so difficult for Lizard to tolerate, I'd had to stop frequently to enable him to attempt to walk off his restless legs.

I was just about to put our bag on the bed when Lizard announced we needed to leave the hotel right away. There was blood on the floor.

I had not touched anything in the room yet, and I quickly about-faced to inspect what Lizard had found. Sure enough, it looked as if someone had recently had a nosebleed. I looked around on the floor a bit more before agreeing to his offer to just sleep in the car when I noticed more "blood." This time, behind the room entrance door.

I could not imagine how in the world anyone would have been able to get blood on the floor right behind the door like that without getting it all over the entrance. As I opened the door to lead us back out into the hallway, I noticed the door had been freshly painted. Red.

We did stay the night, and our evening wasn't anything we could label a sequel to The Shining. But it's an experience we won't forget, and don't want to. It makes far too good a story not to share!

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Friday Funny

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Park it, Son

I recently announced Lizard and I would be taking our charitable fund-raising efforts in a new direction. My snowflake blog posts can get more than 8,000 hits per day this time of year, so I didn't reveal in that day's snowflake pattern the identity of the very dear loved one who has been diagnosed with Parkinson's.

On August 29, we got The Lizard's diagnosis, but our life began changing pretty radically about four or five months earlier.

He'd lost his sense of smell a few years ago. We didn't know then that was something to which we needed to be alerted.

The tremors began a few years ago, too, but they weren't serious enough to raise concern until this year. I thought "the shakes" were because he was drinking too much coffee. When the tremors began progressing and traveling from his right hand throughout his entire body earlier this year, Lizard quit caffeine cold turkey. It didn't help. That's when I first realized something might be wrong. I knew it might take six weeks or so for the caffeine to clear his system, but I didn't expect the tremors to get worse after he quit drinking coffee. They did.

His restless legs became almost unbearable. He couldn't sleep. He became hypersensitive, continually on sensory overload. His writing had become much smaller over the past couple of years, but I didn't know that was a symptom until we began looking up symptoms.

Sometimes I would say something to him, and it would take him longer to respond than I thought it should. Sometimes he seemed to be having difficulty making decisions. He couldn't tolerate crowds at all. His gait changed. He was hunching over more and more by the week. He was losing his confidence on his bicycle, and his equilibrium grew worse until it became downright scary. Ultimately, he was not able to ride any of the rides for which he'd signed up this year.

He'd planned to ride the 30th anniversary Triple Bypass, a grueling one-day 120-mile three-mountain pass bicycle ride boasting more than 10,000 feet of elevation gain. This is his favorite of all the rides in which he has participated.


I didn't want him to ride the Triple this year, but I didn't want to tell him he couldn't do it, either. I was really worried. There are some super steep drop-offs along the route, the highways are not closed to traffic during the ride, and it could get very hot on some of the toughest climbs. I'd witnessed the heat completely melt him during a training ride, and his whole stance on the bike, once so powerful and poetic, now seemed so wobbly...

Typically, we get up at 4 a.m. so he can start the ride before the sun comes up and finish before any potential thunderstorms build. At 5 a.m., he was still trying to decide whether he should try. At 6 a.m., he said he wouldn't be able to finish before the storms built. I told him he could ride as far as he wanted, and I would pick him up when he felt he couldn't or shouldn't go any further. By 8 a.m., he'd decided he didn't have enough balance to ride. I was relieved, but my heart was broken for him. I knew what this ride meant to him.

His doctor ordered an MRI, and then we had to wait eight weeks for an opening with the neurologist. During those excruciating 58 days, we didn't know if he had essential tremors, hypertension, multiple sclerosis, Parkinson's or ALS, or a combination thereof. For eight nightmarish weeks of further deterioration, we made plans, just in case it was ALS.

We would retire, and he would try to finish off what 14ers he could, if he could. We would sell the house and buy an RV so we could visit the loved ones we wanted to see before the end. We both tried to convince ourselves and each other that it would be okay because both of us had lived very full lives, and we didn't waste much time at all. We had so much for which to be thankful.

Lizard clung to his independence as mightily as he could and refused to allow me to go with him for his first appointment with the neurologist. I worked through the day and tried to be patient while waiting for him to call or email to let me know the diagnosis. He never contacted me. I assumed the worst. He would be mine for six to nine more months, and then he would be free of the misery he was experiencing. I would be alone, but with many happy memories and a love I'd never imagined could happen to me before we met.


I cried all the way home that night.

He was in good spirits when I walked into the house. I calmly asked about the results. He calmly told me he has Parkinson's, likely early onset, and he's probably had it for at least five years, if not longer. Medication would begin the next day, and if the medication worked, improvement would seal the diagnosis.

Relief washed over me, but I couldn't understand why he didn't tell me earlier in the day.

"Because I'm going to be okay," he explained. He thought I'd take no news as good news. It makes me giggle now, but at the time... oh, my gosh. Yet I was SO grateful I wasn't going to lose him in a few months!!!

That night and the next day, I had the chore of informing loved ones and friends who were waiting on pins and needles the whole time, just like us. My parents, who both have health issues of their own, both were so supportive and so loving. The first words out of both of their mouths was assurance that Lizard would be okay because, "Michael J. Fox has had Parkinson's for years, and look how well he is doing!"

Later I would learn Michael J. Fox is indeed doing remarkably well, considering. But the very same symptoms afflicting my Lizard take their toll on the actor, too. Parkinson's is a progressive disease. It gets worse and does not get better, although people affected with it certainly experience some good days to go along with the bad. There is no cure.

I like the attitude of Michael J. Fox. He has famously said, Parkinson's "is not a nebulous cloud of doom that hangs over my head. It’s a set of challenges, and there are rewards in meeting those challenges."

Lizard's medication did make a difference... almost immediately. He was able to sleep the first night of what he calls his new normal. His sensitivity isn't off the charts now, sometimes the tremors aren't very bad, and he's back on his bike. He's got his sense of humor back, and that makes me incredibly happy. We don't know how much of what he lost he will get back, but he says, "Parkinson's will find me to be a formidable enemy."


Watching this powerhouse cyclist become a mass of tremors while not being able to do a thing to help him was one of the most difficult challenges I have encountered in life. Today, he asks me to go with him to see the neurologist. I sometimes have to remind Lizard to swing his arms when we walk around the lake, and life is a bit slower and a bit more relaxed than it has been for 13 years. I'm back up to 45 miles in a day on my bike, and although his mileage is not building yet, he's doing some single track he didn't think he'd ever be able to do again. He said he's learning to coach himself. He's had plenty of practice - he's the best coach I've ever had!

We don't know if next year's Ride the Rockies will be a realistic goal for either of us, but we'll have fun training and trying to build upon what we've already gained. Not one training ride will ever go to waste, even if we can't do big rides anymore. We're keeping our bodies healthy, and we'll never stop looking forward to the possibilities the future might hold.

There have been some dark days this year. But spring is on the way. The light is coming. We just have to keep reaching for it.

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