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!

Good Grief

From the moment Jamey was diagnosed with Parkinson's (1997), we knew there would come a day when he could no longer move well enough to do ADLs (Activities of Daily Living) on his own. Twenty years later, we are there. It has been a gradual change in some ways, but in others it has come all at once.

For years we took for granted so many things; walking, dressing, toileting, basic socialization. Now, just turning over in bed, is a challenge. It seems we lose something different every day. Grief is a constant; grief for the caregiver as well as the Loved One.

Moving through the 5 stages of grief, with any chronic or terminal disease, is difficult to navigate. You may be going through several of the stages all at once because of the loss of so many things simultaneously. It's alright to acknowledge the disappointment and sorrow, but don't stay there too long for there is more grief nipping at your heels, and you will need to make room for it. Living in a constant condition of grief can be very difficult. Make sure to communicate about your feelings, don't stuff them down.

For us, our faith is indispensable. Trusting God to get us through is valuable and it allows us to trudge on through the desert without looking back. God is in control, even if it doesn't feel like it sometimes. He sees the big picture when we can't. We trust him. Trust keeps us joyful.

Whatever you need to get through the difficult times, call on it! Don't let yourself dwell on things you've lost, because it won't help you get those things back. Live in the here and now. Do what you can to find some spark of good it what you're going through today. Dwell on the positive things. I assure you, things can look much better if our focus is on the silver lining instead of the dark cloud.

Everyone moves from one stage to another at their own pace. Don't try and rush someone through. I often hear others tell grievers, "It's time to move on!" Well,it might not be time for that person to move on. Yes, we need to encourage him or her to get to the acceptance stage, but the only person who can truly move them, is them.

To help you identify what stage or stages of grief you're in, here are the 5 stages in order. I use a mnemonic to help me remember. Keep each stage in mind as you move along. Being aware of the steps is crucial in getting yourself to acceptance.

DABDA: Denial, Anger, Bargaining, Depression and Acceptance.

It's not an easy road, but it is the one you're on. Hang in there and communicate with each other; that is so important! My heart and prayers go out to you who are on this journey along with us. We'll get through it and be all the wiser for it, I know!

What is a PANC Conference?

PANC stands for Parkinson's Association of Northern California*. They are a group in our area that supports fundraisers for research, patient support, caregiver support, and education for those with Parkinson's Disease. Last November, we attended a seminar sponsored by them. It was amazing!

Jamey's Neurologist recommended it. As it turns out, he is on the board for PANC and was involved in the program that day. What a great opportunity for us to attend.There was no charge to us and the day included several guest speakers (one of which was Davis Phinney, professional cyclist and winner of Tour de France, diagnosed with Parkinson's at the age of 40). There was a nice lunch, lots of movement to music (at our table), good suggestions, visitation with fellow Parkinson's sufferers, and lots of resources!

One of the other nice things about this seminar was the comfortable way to get to know other PD sufferers. There were no ice breakers where you need to tell others your most embarrassing moment, or what you had for dinner the night before.There were about 60 tables of 10, throughout the room, and we were told to sit wherever we liked. We had seven other people at our table, each with varying degrees of the disease or in attendance for a loved one with the disease. We were not required to talk with anyone at the table, but it was a natural bi-product of the day. Jamey doesn't like to converse, but I'm uncomfortable with silence among people I don't know, so I asked questions of the people at our table and found out a lot about how the disease manifests in others. Jamey in turn, opened up a little as well.

It was an informal meeting where you can get up and move if needed, go out to the many booths, or even leave early if you want. The lunch was nice (also no charge) and allowed us another opportunity to chat with others at our table. It was worthwhile and very well planned.

You'd think we had nothing more to learn about this disease after having it over 20 years, but it's a sneaky little bugger and it never ceases to surprise us. Looking over the assembly, it was clear we were close to the youngest, if not THE youngest couple there. And we were also the couple who had been dealing with the disease the longest. Interesting, I thought. But, we both came away with new information, a renewed appreciation for others and a vow to return again to learn more!

This year's PANC conference is scheduled for October 21. We've decided not to attend this year for various reasons, but as Jamey's PD progresses we find we need these types of programs more and more. We plan to bring our daughters and their husbands to the next conference (family members, or friends, may attend for a small fee).It's a great way for loved ones to learn about the disease and how to assist family members going through it.

I encourage you to find a similar program in your neighborhood. Like us, you might just learn something new!





*If you do not live in Northern California and are looking for something in your area, search APDA (American Parkinson's Disease Association). Their website has information about seminars, support groups, etc.

For Women Only?

A small warning before reading ahead. This posting uses direct descriptions of anatomy . If you are uncomfortable talking about private parts, forego this posting.
LOL This is a sure way to get people to read this, isn't it? :)

I recently sought a topical treatment for a yeast/fungal infection for my husband, and was surprised to find there are no over-the-counter treatments for men. Granted, these infections are more common in women so it stands to reason there would be more availability of medication for them. But NONE for men? They get them too, especially men who are confined to a wheelchair. The Pharmacist assured me there was no OTC treatment for a male infection of that sort.

Now I'm not one to take 'no' for answer and I certainly didn't want to truck Jamey and his power chair 40 minutes on down to Kaiser to be told what I already knew, "Your husband has a yeast/fungal infection."

So I looked at all of the OTC treatments to be sure the Pharmacist hadn't missed something. Every one of the remedies was for women. Each included a syringe with a suppository, and a small topical treatment for the itch. Obviously, a suppository would be of no use to a man. When Miconazole Nitrate first came on the consumer
market, we had to fill the included syringes with a cream and then insert them inside us. Those I could have used as a topical treatment for a man since they were in liquid form. But, today's suppository is hard and sphere-shaped; impossible to apply anywhere but the vagina.

The saving grace? There was a small amount of topical solution in the female mediation package. While it is primarily there for the itch, it contains a diluted amount of the medication so I thought it might do the trick. I had my doubts about it being enough, but I applied it at bedtime and we noticed a difference the next day. I applied the rest of the ointment the next night and amazingly, it appears to have gotten rid of the infection! I will contact his doctor and see about putting Jamey on a preventative probiotic that will keep the infections under control. Those of you who are confined to a wheelchair might consider a supplement that heads off these infections as well, especially women in wheelchairs.

I still wish there was a treatment available for the male of the species, but it seems this works in a pinch. It is not an inexpensive way to go, but if you cannot get to the doctor right away, and you KNOW what you're dealing with, this might get you through a day or two. I do not have a license to practice medicine, so please do not take this as a sure way to cure an infection or illness. I'm just sharing what worked for us.

Always ask your doctor before taking any OTC medication.

A New Power Chair and a Vacay in Disneyland

We just got back from a week in the Happiest Place on Earth, and NSM delivered Jamey's new chair! It sure is a HUGE improvement over what he's been 'driving.' He sure wishes he had had it in Disneyland--would have made things a little easier.

So, this chair is so much more comfortable for him! It was made to fit him alone (too bad they couldn't put a seat on the back for me!).  The only thing he doesn't have is a way to recline it himself. The recline has to be done by a technician. That means we have to call for service, wait for an appointment, and then hope the change works for him. The good thing is that his doctor can recommend he have an additional recline device put on, so when we go to see the doc in October, we'll have him request it for Jamey. That way he'll be able to recline it whenever he wants to.

I mentioned we spent a week (well, actually 5 days) in Disneyland. While it was very challenging, it was worth the time. All our kids and grandkids (one in person and one on the way) were there to celebrate our 40th anniversary a year early. We felt we better do it when we could because of the uncertainty of life. It was so much fun, even though it was a lot of work. We will have wonderful memories for years to come.

If you are disabled and have an opportunity to go to Disneyland, don't stay home because the thought is too daunting. Here are some tips.

1. Stay at one of the Disneyland Hotels, in an ADA room (it is worth the extra money, I promise you). In order of least expensive to most: Disneyland Hotel, Paradise Pier, Grand Californian. The Grand empties out right into California Adventure Park or Downtown Disney, whichever you prefer on a given day.

Up from his chair and 'caning' it for pic!

2. Have them prep your room ahead of time. We had a hospital bed brought in from one of their suggested supply places and that made ALL the difference. It was already set up when we got there. Whatever other extras you need, Disney is happy to provide them for you. (Well, at a price, that is 😉.

3. Don't be embarrassed to ask for assistance. But, honestly, the cast members are so good at identifying issues, you probably won't even need to ask.

4. Stop in at City Hall when you first enter the park. They will be able to give you a detailed map of all the places that work best for disabled people. There are two places in the park that have Companion Restrooms. These are private restrooms where you and your caregiver can go together. No one else is around--just you, or you and your caregiver.

5. California Adventure rides are all ADA approved. So, you can ride your chair or scooter the entire way up to transferring onto the ride. In many of the rides, they will take you out of line and load you before you are all the way up to the front which shortens your wait. The nice thing is your entire party can go with you.

6. ADA requirements were not an issue when Disneyland was first built in 1955. However, they are working on getting all the rides handicap accessible. As long as you can transfer from your chair, you can still go on most of the rides. For instance, to get onto Pirates of the Caribbean, you need to go to the exit area of the ride and get a "come-back" time (it's usually about 20 minutes). Then you go in the exit and they take you from the opposite side of the river where the normals get off the ride (LOL). That means your wait is far less than average and they are very patient with you. Other rides do similar things, so check with a cast member for information, or ask while you're in City Hall.

7. If you're not yet in a wheelchair, but are afraid of all the walking, order a scooter rental. Go online to www.applescooter.com. You can order online and have the scooter waiting at your hotel (any hotel, not just Disney hotels) upon your arrival. The last day, just return it to the Bell Hop and you're on your way. It is far less expensive and more convenient than renting one from Disneyland. I parked the scooter where all the stroller parking was at each ride. Then I was able to stand in line with the rest of our party, all the way up to embarking the ride.

Flying is quite easy if you are in a wheelchair and can transfer out. With Southwest, we checked in at Full Service and received a clearance for security. So we didn't need to take off our shoes, or wait in line with everyone else. Jamey's chair had to be wiped down for possible chemicals but it wasn't that bad. Then we went all the way up to the plane's door and my son-in-law helped Jamey to his seat. They took the chair down to baggage and we were set to go. When the plane landed, they brought the chair back up to him. Everyone was very accommodating.

I don't know how it works if you are wheelchair-bound and cannot transfer, but call the airline ahead of time and arrange for someone to be there for you, to help you get through it. We were blessed to have both sons-in-law and a daughter who is a travel agent, so it was a pretty smooth trip for the most part.

But, I'm telling you from experience, don't miss out on something wonderful because you're afraid of the inconvenience.

It's worth the memory to give it a try!