Rock Steady Boxing

Well we've started a new exercise program specifically geared for people with Parkinson's, and it's NOT for the faint of heart!

A friend of mine mentioned a boxing program for Parkinson's patients. Her friend's husband was recently diagnosed and his doctor recommended it for him. I asked Jamey's Neurologist and he gave it a big thumb's up (he is familiar with the curriculum and loves it). Since Jamey is now in his power chair about 98 percent of the time, we weren't sure it was going to do the trick for him. But, we decided to give it a try.

Drum Cardio

It turns out it is amazing! This program covers everything from memory issues, to movement, to cardio, and more! The instructors consider the abilities of each student and design the curriculum accordingly.

We've only gone to two sessions so far, but Jamey has already shown some improvement. He turned to me during the class today (only the 2nd one we've attended), and he said, "I have a muscle!" LOL Glad he's keeping his humor, because this is not an easy program! I'm exhausted when we're finished each time. He doesn't say much about how tired he is, but the fact that he took a two-hour nap the last time we did this is proof, I guess.

The instructors start with a warm-up where the students work on cognition and memory (they are very creative with the games they play). Then they do cardio (could be stationary bike, rowing machine, or something completely different). Next, they go to work on the speed bag, which is alternated with lifting weights. Everyone then switches to the punching bag, where the instructor teaches left jabs, right crosses, hooks and undercuts. Finally, they get to the cool down with stretches. It's a well-rounded course and lasts an hour and a half. They're going at full-steam pretty much the entire time; 45 seconds on, 10 seconds off for a full 10 minutes, then they switch places and start all over again!

Working the Speed Bag

I'm there right along with Jamey, even doing the exercises with him when I'm not assisting him. So I'm actually getting quite a workout myself!

Of course it is not contact boxing, but Jamey says he want's to call himself "Kid Gorgeous" and asked me to make him one of those satin capes they wear when they get introduced in the ring. While I appreciate his confidence, I'm more inclined to call him "Kid Presentable" like the character of Moe Sizlak, during his boxing days on the Simpsons.

Finishing with Hooks and Jabs

I've got to say, this is one of the best things to happen to us since he was diagnosed! It's exercise he likes because it's a sport; it makes him move around, and most of the people in the class are in about the same stage of the disease as he is. It makes for a social event as well as a physical challenge.

I just have to send a 'shout out' to the folks who think outside the box(ing) to come up with these programs for people like Jamey. What a blessing it is! He actually got out of his chair today and did the boxing standing up! Woo Hoo!


To find Rock Steady Boxing near you, go to www.rocksteadyboxing.org.

Will ASL Help?

It seems like each day we wake up, there is a new struggle! I suppose that's the case with any disease; grieving for new losses, navigating new challenges, creating new normals.

Jamey's speech has gotten difficult for me to understand. I have to strain to grasp what he is trying to communicate through the slurring words and low volume. I'd been thinking it is just me. After all, my hearing isn't what it used to be and I'm not at sharp as I once was (hard to believe, I know).  But, when we hosted a family game night recently, Jamey's sister and mother both took me aside and mentioned they were having difficulty as well. Actually, there was no need to tell me; I could see the blank looks on their faces when he was trying to tell them a story--and the glances in my direction, the look of "help!" on their puzzled faces.

It hurts me to see this happen. He wants to be part of the conversation so badly and he has so much to contribute. But, he just can't keep up with everyone talking so quickly and not allowing him any time to get in what he wants to say. The Human Race is an appropriate name for us because we are always in such a hurry. We rarely make time for the people around us who would like to participate but need more time and patience--or even just an opening in the conversation!

As his wife, and caregiver, I can do my best to pause people when I see Jamey wants to contribute, and encourage people to listen because I know what he has to say is important. But, understanding what he has to say is a different matter. If I can't understand him myself, how can I interpret for others? As I get older and lose more of my hearing and cognition, the challenge gets more difficult!

So, Jamey and I have decided to try learning American Sign Language. I know that learning a new language at our age will be tough, but we already know a few signs and we are willing to give it a try. So far he has been able to use his hands fairly well. Time will tell. For me, talking with my hands is something I've done since birth--I'm a woman, after all--it's just hard trying to do it without my mouth flapping, too! Actually, the books say you should also 'say' the words you're signing, so that makes it easier for me.😊 We haven't been able to find a class in our area, but we are starting with the book, ASL For Dummies. The key, I think, will be to start talking to one another often, with ASL, so the language becomes second nature to us.

I'm hoping this will help us communicate better and more often. After 40 years of marriage, the communication should be better, right? 😏 Granted, we do have an advantage being together that long. We can already finish each other's sandwiches...uh, I mean...sentences.

So, I'll keep you posted as we progress. In the meantime, if you visit, please give Jamey an opportunity to join in your conversation. And, don't rush him along. He will feel so much more a part of your visit if you just be patient and bring him into the dialog, too.

Superhero likes Superheroes

Jamey has an amazing Neurologist--one of the best in the nation--and even though he's younger than most, he knows much more about Parkinson's than any other neurologist we've visited in the 21 years since Jamey was diagnosed. Dr. Khandhar keeps up on the latest research and progress with PD (Parkinson's Disease). It's clear he reads everything he can get his hands on and is often asked to speak at PD events. He is active with MDS (Movement Disorders Society), and AAN (American Academy of Neurology).

We go to see him about every three months and he is always professional. He takes the time to listen to our issues without acting like he's in a hurry to get to his other patients, although, I know he must be; they pack is schedule pretty full. He always has time for us. That is a big deal for those of us on this journey. Because of his high position in the medical world, we don't know anything about his home life or what he does in his free time, or whether he even has free time. He's a bit like a favorite teacher you might have had. You cannot imagine they even have to go to the bathroom like normal people! He kind of walks on water in our eyes.

So we were surprised when we visited recently and he commented on a Marvel Comics shirt Jamey was wearing. The shirt depicted a recreation of the Table of Periodic Elements using superhero initials as the symbols. Dr. Khandhar actually knew who they all were; even the seemingly obscure ones! We'd never noticed it before, but there on the lapel of Dr. Khandhar's lab coat, were several pins of Marvel Comics characters!

It was so fun to find out this hidden tidbit about Jamey's amazing Neurologist, a superhero in his own right. Maybe he feels the need to keep up on superheroes because he so closely resembles one himself! His super power has to be making PD patients feel confident, cared for and hopeful. We are so blessed to be his patients!

How many Superheroes can you name?

Disrupted Sleep

Those of you with Parkinson's and/or your caregivers, have probably had some experience with disrupted sleep patterns. That could mean anything from shortened periods of sleep to talking or yelling, waving your arms, or moving your legs around while you're supposed to be sleeping.

If you live by yourself you may not know you are active in your sleep, other than the symptom of being tired or fatigued upon waking up. But chances are good, the tiredness you feel is due to your nighttime sleep activity.

Jamey has not only brief sleep periods (often four hours max), but he also has elaborate talks in his sleep, along with body movement. The worst part for me is the yelling or calling out. Since I sleep with one ear open anyway (in case he needs help during the night), it is unnerving to be aroused by a yell, often associated with some kind of sport. For example, "Pitch it!"  or "Run, run run!" are common raised-voice mantras for him in sleep mode. Being jarred awake is not my choice of a wake-up call. I am immediately up and ready to help when I find he is sleeping soundly and completely unaware of having wakened me. Often though, the yelling and talking is blabber--no coherent words.

His body is constantly moving. Even though he doesn't have a severe tremor in his awake state, he makes up for daytime lack of movement in his sleep. His legs constantly shift back and forth and he repositions frequently. If he's not moving around, he's talking, mumbling, or yelling. It's a wonder he gets any sleep at all!

I must share with you a strange thing Jamey did in his sleep a few weeks ago. As I said, I am used to the talking; I don't get a lot of sleep while he's doing it, but I'm accustomed to it. The conversation he had on the night in question was highly unusual. He was actually having a two-person conversation, and he was doing both parts. To top it off, one of the voices was a woman! Listening to him do a woman's voice and switch back and forth between two people, made me think of a schizophrenic serial killer; it was that creepy! He carried on this conversation, doing both the woman's and the man's voices, for sometime. Unfortunately, I could only make out a word here and there as most of it was nonsensical blabber. It's what I would imagine someone speaking in tongues would sound like. Unnerving.

I have been assured sleep talking is common with Parkinson's and apparently, the only thing that helps alleviate some of the talking is Clonazepam. Well, Jamey is already taking the highest dose of Clonazepam he can, so I cannot imagine how much talking he might do if he wasn't already taking it. Yikes!

One of the down sides to talking in his sleep is that he has to take little naps off and on throughout the day because he's not getting REMs at night. I'm told waking him during the daytime won't help him sleep any better at night, and without his daytime naps the deprivation could get worse. So letting him sleep when he can is important.

Sleep deprivation can cause numerous other issues, including depression. Since depression is often another by-product of Parkinson's, we need to keep careful watch for symptoms and head off the depression quickly if we can. There are many exercises and/or safe medications the doctor can prescribe to help with depression. Other things to assist in identifying sleep deprivation, are high blood pressure, memory loss, trouble concentrating, increased obesity, mood changes, poor balance, weakened immunity, and clumsiness. (Uh-oh! I have ALL of these!)

Dealing with disrupted sleep is a difficult thing, but being watchful for symptoms of sleep deprivation and depression can help keep it under control somewhat. Sleep when you can and don't go to bed until you're ready to sleep. These are good guidelines for the caregiver as well.

And by the way, don't let your wife take video of you talking and moving around in your sleep. She might post it on a blog! (So bummed I couldn't upload the video because of its size, but trust me...it's a hoot)!

Some of what he goes through

Since he hardly complains and it's like pulling teeth to get him to talk, I'm always wondering how my husband feels and what is going on with his body. I recently came across this article and I think it's helpful. Even if he's not complaining, he is probably in pain and very uncomfortable.

To help your understanding of the following article, an off-state is when the medication in the body is winding down and the body is not moving well. An on-state is when the meds are at their peak and working well to manage the body movements.

The word dopaminergic refers to medication used to create a sensation of dopamine in the PD patient, as their bodies cannot make dopamine (the chemical that controls ALL body functions). Since the brain cannot absorb synthetic dopamine, the medications must block the brain and trick it into thinking the synthetic dopamine is the real thing. That is one of the reason it is so difficult to get movement-consistency with PD medication.

It is important to note all of the things that must be taken into consideration when evaluating pain in a PD patient. You should never try and assess it on your own. Be sure to be in constant communication with your doctor about your pain and other symptoms.


Pain with PD
by Ehsan Hadi M. D., Movement Disorder Specialist, Dignity Heath Medical Group

Historically, Parkinson's disease (PD) has been recognized by its motor symptoms including slowness of movement, stiffness, tremor, gait changes. etc. The phenomena of PD related pain was described by James Parkinson in his original work, "An Essay on the Shaking palsy" and over time PD related pain is seen as one of the more common non-motor symptoms of Parkinson's disease.

Pain can be an early symptom and even precede motor symptoms by several years. PD pain usually occurs on the side on which motor symptoms first appear. It is found to be more common in younger patients and has a higher frequency in women. Presence of depression, systemic diseases such as diabetes, osteoarthritis and rheumatic diseases are also associated with a greater prevalence of pain in PD.

PD related pain is associated with stiffness, slowness, postural abnormalities, sustained/intermittent muscle contraction (dystonia), nerve compression (neuropathic pain), impaired central modulation of pain caused by dopaminergic deficiency, due to inner restlessness (akathisia) and musculoskeletal causes. The location of pain can be quite variable.

The pathophysiology of PD related pain is not well understood, however, overlap between dopaminergic pathways, pain processing networks along with lower dopamine levels, and disturbance in the pain inhibiting region probably lead to an increase in sensation or perception  of pain.

Pain management can be challenging and best achieved by understanding the underlying mechanism and utilizing an interdisciplinary approach. PD pain is three to four times more common during the off-state rather than the on-state, which makes it essential to accurately identify the nature location and association of pain with dopaminergic medications for better management and appropriate referrals. Mood evaluation of the patient is also crucial because PD pain and depression/anxiety can be inter-related and may require specific treatment. PD pain management should be based not only on pharmacological but also non-pharmacological methods and, to some degree, invasive approaches and can range from optimizing dopaminergic medication, analgesics, tricyclics, DBS surgery, rehabilitative behavior, complimentary therapies such as massage, music therapies, etc.

PD related pain may not afflict all PD patients, but when it does can be debilitating. Yet it remains under-recognized and inadequately treated--mostly due either to not being discussed with the PD providers, not being recognized as PD related symptoms , or treated with inappropriate thereby leading to increase medication burden and thus warrants great attention and education.


Reprinted from The Parkinson Path, Distributed by PANC (Parkinson Association of Northern California, Winter 2018

I'm Learning!

My daughter and her husband (and our two grandkids) are moving up our way! So, this weekend they were here to find a rental while their home is being built on a property near by.

While we were all chatting and visiting, our granddaughter, Charlotte, was going back and forth, finding a place in the closet to hide, jumping out and laughing. We were aware of her presence and watching her as she scurried about, but not really watching, either. You know how that is.

Now, I must interject before I go on. My husband, who is all but confined to a wheelchair, has a need to use a urinal often, as he cannot always get the the toilet and lift the seat on time. One of the strategically placed urinals sits on top of the commode in his Man Cave. The door to the Man Cave is usually closed if Grandpa is not in there. And Charlotte knows she is not to go in there without Grandpa. But sometimes...

All of a sudden my daughter and I realized we had not heard from Charlotte in a few minutes. We started calling her name liltingly, thinking she was probably hiding in the closet again. I had a sinking feeling, 'Check the Man Cave!' Then, I heard my daughter's horrified voice, "Oh my gosh! Charlotte don't touch that!" I knew, right away, what Charlotte had in her tiny little hand!

As my daughter Whisked Charlotte into the bathroom to wash her hands I went into the Man Cave (which, by the way, did NOT have Grandpa in it) and found the urinal on it's side with Pokey the pony inside. All I can say is I'm so glad the urinal was not full at the time!! I could just picture Charlotte's little arm, up to the elbow in that thing, placing little Pokey there so she could shake him up or whatever 'almost two-year-olds' do with ponies in bottles. It was comical but also a teaching moment for me!

From now on, I will remember to be sure all the urinals are out of reach when the little ones come over. And I'll be a little more aware of when Grandpa IS, and IS NOT, in his Man Cave.

As for Pokey, well, I'm sad to say we did not revive him. He was buried in the urinal, in a quiet family ceremony.

Who would have thought?

I would never have guessed it would be so difficult to donate a power chair to an organization or individual who needs one. We have two "like new" power chairs that we would love for someone to be able to use, but have had no luck finding someone to take them. Actually, the one that folds up and only weighs 70 pounds has some possible takers, but the other one, nothing!

Apparently there are a multitude of problems with donating power chairs to organizations. Many places, like Joni and Friends who help disabled persons overseas, cannot take power chairs because of the charging issue; many of the places the chairs would go have no power source or a different power source than the chairs. In addition, places like American Cancer Society, here in the states, won't take the chairs because they don't want to have to remember to charge the chair every couple of weeks until it is purchased or given away.

I have called at least 20 different places and researched a myriad of others online. Every single one of them said, "No thank you". When I asked if they had suggestions where I could take them, all their suggestions ended up "no, sorry". It cannot be this difficult to give someone in need a $4,000 power chair. Well, apparently, it is!

I'm at my wits end, really. I don't want to send these expensive chairs to a land fill. That would be horrible, especially when there are so many people who can use them! I've posted pictures in the clubhouse here at the over 55 mobile home park, I've talked to churches, and I've called Assisted Living homes. What it comes down to is that no one wants the responsibility of charging the chairs while they wait to be donated. That just seems like a silly reason. I've had them in my shed downstairs and have been charging them faithfully every other week so the batteries won't die. It doesn't take any time out of my day, other than plugging in. I'm disappointed and puzzled by this. There are so many people out there who would benefit from these chairs. I just need a resource to contact them.

So, as I was writing this, I got a call back from Habitat for Humanity. They have stores (called Re-stores) placed all around cities in California. Over the last several months, the one here in Grass Valley, has been awesome about coming and picking up good condition items from me to sell in their store. The manager of the store has been extremely helpful and goes above and beyond her job title, giving extra consideration about what she can do to help her clientele. I can tell she cares deeply about what she does. She checked with the owner and they have decided they would like to pick up our power chairs and sell them in their store! Woo Hoo!

Out of all the those calls I made, and all the research I did, the least likely one to come through for me, actually did! That's really something. So they will come to pick up the chairs next Saturday and I know she will be faithful about charging them every two weeks so they don't get drained.

It pays to be diligent and to develop relationships with people as well. It actually all started with an email to her. She saw my blog address and went on there to find out about our situation. She has a friend with Parkinson's so we talked at length about the situation. Through our relationship, we've been able to send them all kinds of like-new items for their store and they have been able to help us out by picking them up. Awesome!