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!

Talk to the Doc!

One of the things I've found as we've gone about the process of purchasing medical equipment, is that Parkinson's (as most diseases) is different for everybody AND every body. In other words, if someone tells you you'll need such-and-such at 20 years into the disease, you may or may not have need of it. You may require something entirely different than someone else with the same number of years with the disease.

Another thing that makes buying medical equipment a challenge, is there are not a lot of places you can go and try something out before you purchase it. Most of the equipment is available online, but you cannot try maneuverability, fit, or ease-of-use before you order. Something as simple as a carpeted floor instead of a laminate, can make all the difference. And you won't necessarily be able to access that information from the item's description.

However, I can offer a few places where help and demo equipment is available. Your local Bischoff's or Medical Supply Store usually hires experienced people who know their products. There are always exceptions to the rule, but for the most part the employees know how their equipment works. Things like scooters, walkers, safety bars, lift chairs, and canes are all items carried by most Medical Supply Stores. Most of the stores also have demonstration items you can try on for size.

We recently had to purchase a couple of lift recliners as Jamey is having trouble getting off the couch these days (on the days he can actually get ON the couch!). I was very impressed with Bischoff's selection. They had a sample of each of their 8 lift recliners; everything from 3-positions to 5 positions. It was nice to be able to try the different chairs. I'm glad they had demos because Jamey chose something entirely different than what I would have gotten him, had I been on my own. Amazing how many models they have--and each one is so different! Very important to try-before-you-buy. But not gonna happen if you order on the internet.

But if at all possible, I encourage you to go through your doctor for all your medical equipment. Even if your insurance won't pay for the particular item, talk to your doctor first. They know you best and can order what will suit your needs better than you or your caregiver can determine searching the internet. Most doctor's offices have something in place to help them assess what you need.

For instance, Kaiser has a department called DME (Durable Medical Equipment). It is accessed by their doctors, PTs and specialists who determine what the patient needs. If Jamey's Neurologist identifies a need, he will recommend it to the PT, who will assess the size and ability of Jamey before placing the order. Doctors and PTs work closely to determine what the patient needs. In turn, if I feel Jamey needs something to help him move better, I talk to his Neurologist and he either orders it for him or starts the process through the PT again. When the doctor orders the item, it fits right and benefits the patient much better. I have personally had my own doctor recommend a product and go through the HMO's procedure, even if my insurance isn't going to pay for it. That way I am sure I'm getting something that is right for me! And since I'm paying for it myself, it is all the more important.

The internet has everything you could possibly want to help you with symptoms of illness or disease. But from experience I can tell you, it doesn't always work out if you cannot try it first. Talk to your doctor about your next purchase. Of course, for things like power chairs, patient lifts, and transfer equipment, you should go through your doctor, regardless. But, for everything else, start with your doctor first. If nothing else, he can recommend a superior product or direct you to the best place to buy it!

Mobility Works

We purchased a new mobility van. Yes ANOTHER one! I know we just got one last year, but the ramp was manual and it has become difficult for me to raise and lower since I broke my back. Plus, I wanted Jamey in his wheelchair up front with me instead of by himself in back. I swore we'd never go through the excruciating process of buying another van, but necessity dictated! The process is challenging to say the least.

I'm not gray, I'm dark blue!

I took Jamey down to Mobility Works a couple of weeks ago, to try out several van configurations to be sure his chair would work. Since the closest MW to us in Sacramento it takes a good hour and a half to get there. We have a wonderful sales guy, Joe, who had everything set up for us before hand. Jamey tried 3 different vans. The VMI had the most room in it for easy turning (he needs to enter up a side ramp, turn the power chair in a tight circle, back up slightly, and drive into the front passenger's side, to be locked into place). But it had some issues that would cause problems down the road. The other two brands, Toyota and Dodge had comparable interiors but they each offered something different. After some discussion, we decided on the Dodge Grand Caravan. We have had those as conversions in the past and they have served us well.

Aside from the obvious wheelchair issue, it's more work for us to purchase a van than it is for the average person. First of all, I cannot do a test drive because I require hand controls to drive a vehicle. That makes it a bit of a crap shoot. In addition, once we decide on a van (a job in and of itself), we must mentally add to the price to have the hand controls installed. The installation takes about 5 hours (this time it took 7) because they take the controls out of our old van and install them into the new van. That saves us a little $.

Accommodations for the wheelchair are almost as complicated. If we decide we want to lock in Jamey the most secure way possible, we need to have an EZ-lock system put into the van.That takes about 3 hours and can't be done the same day as the hand controls. In addition, every power chair he owns (he has 2 currently) will have to have a special apparatus attached to the bottom, to catch the EZ--lock and snap it into place. That system is additional too.  We've opted to wait for the new power chair before installing it. Meanwhile, we will lock him into place with straps that attach to the floor. (Don't tell anyone he's into this bondage thing).They did take the EZ-lock out of our old van and gave it to us in case we want to put it in later. That will save us some money in the long run too. Always a good thing. 😉

So, the next step was to find a used van that had everything on it we needed. I also wanted something NOT WHITE. I know it seems like a silly request and shouldn't even be considered, but really, I'm just tired of white. The last two vans we've had have been white. Unfortunately, the converted van availability is 98% white, so Joe had some searching to do.

It didn't take him as long as we thought it would! So we are the proud new owners of a 2013 Dodge Grand Caravan with everything automatic (that was the point after all). It was half the price of a new one ( the trade-in helped). Let's just say the quote for a new one was 6 figures. I saw that first quote and thought, 'Used is good. Yeah, let's go with used.' It's still an outrageous amount for a mini van, but when you're in this situation, you have to go with what works.

All in all, the process took us about 3 weeks, and several trips to Sacramento, but we survived (although Jamey as been asleep since we got back 5 days ago LOL). I will never go through the excruciating process of buying a van again.

I know...Never Say Never.

Go River Cats!

As most of you know (especially if you are Giant's fans) Sacramento's Raley Field hosts a Giant's farm team called the River Cats. Turns out the drive is about the same distance we drove to see the Giant's play at AT&T Park. The nice thing about Raley is that it's a lot more disabled-friendly, and holds fewer people. So, for those of us who have trouble walking in crowds, it's just right! Very much like Spring Training ballparks.

The church that Jamey's parents attend, gets group rates once a year, and we were able to join them this time around. Since the seats were in a reserved section, and differently-abled folks can sit in any open spot behind the first section of seats anywhere in the park, his parents were able to find us an opening right behind their church group! And it was a great view! Jamey just drove his chair into the empty space and I sat in the stadium seat right next to him.

It is fun to watch up-and-coming pro leaguers, along with some that have been to "The Bigs" and come back to AAA because the injured player they replaced got better. We saw lots of names we recognized; Trevor Brown, Conor Gillaspie, Mac Williamson, and Jae-Gyun Huang. The roster is filled with great prospects. In the end, we didn't win, but Mac hit a homer to put us ahead in the 8th. It wasn't enough but it sure got us going for a couple innings.

It's always difficult for us to do something new, especially where crowds are concerned, but we are glad his parents asked us to go. It was worth the time and energy. Looks like we can get our dose of baseball now and again without traveling all the way to Arizona!

Custom Power Chair!

We drove to Sacramento today so Jamey could be assessed for a new power chair, or so we hoped. I was sceptical because of all the hoops Kaiser makes us jump through on a regular basis. Also, I had called both Kaiser AND Medicare last year to ask if they would cover a new chair for him and they both issued an emphatic NO. So, we ended up buying our own chair out-of-pocket.

When the PT came to the house a few weeks ago, the first thing she said was, "That chair doesn't fit you right." She took info back to her supervisor and asked that they order him a custom chair. We knew that was going to get above the $10,000 dollar range, but I was willing if he could have a chair that would fit him properly.

Kaiser's PT needed to see the chair he was in and determine whether or not he should have a new one...and whether they would pay for it. I've been whining ever since I found out we had to go to Sacramento to get assessed, as I knew they wouldn't see it our way!

Long story short, my dinner will be crow tonight! They agreed he needed to be fit properly in a new chair and Kaiser and Medicare will take care of 80% of the cost! Woo Hoo!

They measured him (so many measurements!) and went through the entire chair specs to see what he wanted on the chair and how he wanted it installed.They will build his chair to his measurements from the bottom, up.

This chair is the Lexus of power chairs. Up till now all he's had have been Toyotas. This is what they call the highest rated chair, but it is a base model. The cool thing? As his disease changes they can add whatever is needed to the chair. Things like motorized reclining, raising and extending the footrest, joystick digital screen and easy move features. Instead of a single column holding his seat up (like his chair now), there are 4 columns; 1 on each corner. The chair also has a shock absorber system just like in cars. This is going to be one awesome chair! It also goes a lot faster than his current chair. No drifting, Jamey!

So, Kaiser has made a liar out of me, but I am happy to admit it. Jamey will finally be more comfortable. Since he's in the chair so much of the time now, this is a big deal for him. The negative part is that it will take 4 to 6 weeks to get here. 😞 But, knowing that it's coming is so exciting! Can't wait to send you a picture when it comes! right now you'll have to be satisfied with the one from the website. And by the way, don't go thinking you can get one, too. These take a prescription!

And oh, yes, the color? SF Giant's orange of course!!

How Much Therapy Can a Person Take?!

The last two weeks have been packed with appointments! Jamey's doctor ordered him home visits from a Physical Therapist, Speech Therapist, Occupational Therapist, and a Social Worker (not the kind that checks for abuse, the kind that checks to be sure you are getting the help you need). I tried to hide his bruises anyway, just in case. :)

The therapists were given strict instructions from their company, to get all of the therapy done within as few days as possible. Whew! they are following those directions to the letter. We got a call the day after we saw the doctor, and the PT wanted to come over right then. Hmmmm. Okay, we have nothing to do all day, so sure, why not? Every one of the other therapists have either called to make an appointment the same day or the day after. Each of the three therapists needs to meet two him times per week. So, that means last week we had 6 appointments, each lasting 40 minutes to an hour, in only 4 days. And that doesn't include the social worker or the PT who did the evaluation.

In addition to the confusion of having so many people coming and going through the house, three of the four of them had the same length red hair, similar features and the same build. Honestly, they looked like they'd been cut from a mold or something. Is this a new Stepford Therapists thing? Us old folks have enough trouble keeping things straight. Oh, I know, they're trying to confuse us so we'll need more therapy!

Thankfully, I didn't schedule anything on Friday so Jamey could have a day off. Good thing, too, since he was moving pretty slowly by the end of the week. At least the last couple therapists from Thursday were able to schedule themselves in advance and I know what's coming this week.

I know what you're thinking, why would the doctor order this kind of help 20 years into the disease? I thought you'd never ask. With the fluidity of Parkinson's it makes sense. In fact, I think it would be a good idea for all doctors of Parkinson's and the like, to order therapies every couple of years because of the progression of the disease. As the disease changes, so do the requirements of the patient and the caregiver. Having various therapists in the house, while inconvenient, was helpful to us both.

Here is a breakdown of the specialty therapists, in case you don't know the differences.

PT (Physical Therapist): For the physical rehabilitation of people recovering from injuries or disease. The PTs goal is to get the person moving again, restore mobility. In the case of a chronic or terminal disease, the PT will teach patients how to prevent progression of symptoms, or manage their condition more adequately. Some crossover with OT.

*Our PT gave Jamey stretches to keep his posture straighter (I had started referring to him as Pisa), and got him up and walking. The walking was fine while she was here, moving him along every minute, but once she left he wasn't able to do it on his own. I wish I could work with him every second like she did, but it isn't practical with everything else I've got to do. She also started the ball rolling for a new power chair for Jamey.

OT (Occupational Therapist): For helping the patient with ADLs (Activities of Daily Living). The focus is primarily on enabling the patient to engage in meaningful activities of daily life as seamlessly as possible. The OT will be able to recommend electronic equipment, toileting helps, and dressing aids, as well as help set up the home for the patient's needs. Some crossover with PT and ST.

*Our OT wasn't as knowledgeable as I'd hoped. She couldn't answer the questions we asked about urinals and keyboards. It did seem we knew more than she did about equipment overall. She helped him with some hand putty to keep his hands limber and gave suggestions about moving the bed closer to the wall. She did help somewhat, but not with the things we really needed. I'll have to do my own research.

ST (Speech Therapist): For helping with not only speaking, but cognition, memory, and eating issues like swallowing and choking. ST can assist with keeping food in mouth, voice volume and recommending utensils and tools for the above. Some crossover with OT.

*Our ST is very helpful. She has given Jamey ways to increase his voice volume so I can hear him better, gave him tricks to help memory, and helped him with his swallowing. Because Jamey had been to an ST before, I didn't put much stock in this therapy, but she has turned out to be the most help!


Social Worker (sent by Therapist company, not the state): Answers questions about whether you qualify for SSI, how Social Security and disability work, and whether you are being given the correct information to help move you forward.

She was able to answer our questions about whether we qualified for SSI, etc. She assessed our situation and complimented us on how open and ADA compliant the house was for Jamey. Kudos to my father-in-law for that!

So, we've started another week of back to back appointments. Can you tell I'm smiling? We will also take Jamey to Sacramento to be evaluated by Kaiser for a new power chair (bummer, because Kaiser and Medicare told me less than a year ago they wouldn't pay for a new chair so we went ahead and purchased one out of pocket) as the PT thinks it doesn't really fit him properly.

Life is good! It continues on (better than the alternative, I suppose).

Hidden Figures

When Jamey was first diagnosed with Parkinson's, our immediate concern, of course, was how this would change our lives. The day to day functioning, movement, and overall quality of life was on our minds. However, one aspect of the disease we didn't actually consider, was the overall financial burden. Of course we knew we would have more doctor appointments--that was a given--but we didn't think of all of the hidden costs that we would incur.

At the beginning, it wasn't too bad, but as the disease progresses, all kinds of issues crop up. Issues we never thought about.

Medication - The more years we have with PD, the more medication is required to keep his body in check, to keep it functioning, to allow him some amount of control.

Battery changes - This only relates to those who have had Deep Brain Stimulation surgery. It only occurs about every 3 years, but it can be costly. Last time we had a rechargeable battery put in to give us more time. However, 9 years goes by very quickly and our time is just about up again!

Botox - Yes, Botox! Dyskinesia is so strong at times, it clamps his eye shut and causes pain to his face. So every 3 months we get Botox on that side of his face, to help him function better. It really works, but of course, it's pricey!

Chiropractor and PT - It's a continual process to keep his posture upright. Sometimes he is so severely tilted to one side, that his neck causes horrible pain!

Dental Care - It is now necessary for Jamey to get a cleaning every 3 months because he is not able to brush his teeth properly on his own (even with an electric toothbrush). A deep cleaning is necessary (and often painful) to keep his hygiene in check. In addition to the cleanings, he must take premeds before each one, to prevent infection to the brain (this is only because he had the DBS surgery).

Extra Caregivers - I was able to do all of this myself for almost 20 years, but now I cannot do it all any longer (the stroke didn't help). We've had to hire more caregivers and we're at the top of the care schedule, which means we pay the most per hour because of the care needed. This also has its own set of issues. If we go through an agency, they take care of all the taxes and legal end of things. But, if I hire an independent (half the price), I have to have them fill out a W-9 and at the end of the year send them a 1099. If I pay them more than $2,000, I have to take out taxes myself and make sure I am legally on course. It's a great deal of work for the average sod!

Medical Equipment - This includes a patient lift (to help get him up from a lying or sitting position), a van to accommodate his wheelchair, various lifting, dressing, and moving assists, safety bars for walls and toilets, and several kinds of wheelchairs. Fun stuff!

Diapers - This is an added item now that we're in our 20th year with the disease. What is most difficult, is finding the right one that works at the right time. Because the disease changes constantly, what works one week my not work the next. So, we spend a good deal of money trying to find what works for him at a given time, and we have a lot of left overs that don't work at all. I keep all the "didn't work" items because at some point they may work for him. Hmmm, maybe we'll have to add storage unit to this list one day! LOL

Toenail Cutting - He can no longer cut his own toenails. I was able to do it for awhile, but now it's just too difficult for me. I don't want to risk cutting his skin! So we will have a Podiatrist do it for us, once I can find one nearby.

Eating Utensils - A special set of eating utensils is very helpful to Jamey. I purchased 2 sets and it was close to $200 (see "Helps" at side margin), but it has allowed him to continue to eat on his own without help. So worth it!

This is not an exhaustive list. Each person will have their own experience and each person's body will respond differently to the disease. There may be things we haven't had to deal with (swallowing issues for instance) that you may have. I know it looks daunting, but remember, this is after many years with the disease. I just want to point out things you might not think of, so you can be saving for them right  now. If you have good medical insurance, that's a plus! Medicare used to pay for many of these items, but they no longer do. I hope that will change back at some point.

The most important advice I can give you through all of this, is to enjoy every minute you have with each other. Whether you are a husband, wife, parent, sibling, or a friend. Every minute you have with each other, even if it's spent caring for them, is precious! Don't let the financial end of things discourage you to the point of depression. Remember, the most important thing is that you have this loved one for another day!

Caregiver Resources

So, I never knew about caregiver resource centers till I moved to Northern California! Quite frankly, I didn't know there was such a thing available to the home caregiver. I wasn't able to find anything in San Jose when we lived there.

We have a facility here in Citrus Heights, whose sole purpose it is to help the home caregiver! The company, Del Oro Caregiver Resource Center, supplies respite, a yearly seminar, counseling, and more, at no charge to you. And, they don't base the help you receive, on your income!

We've been here for close to 2 years, now. And this is the second year Del Oro has given us vouchers for extra help to take care of Jamey. That has saved us $2,000!  I have someone come in on Wednesday so I can go to my Bible Study without worry about him alone. She showers, shaves and dresses him so it gives me a break one day a week.

Since home caregivers no longer receive a stipend from the government (we hope that will change in the near future), we must rely on help from places like Del Oro. I encourage you to find caregiver resources in your area.l have received not only respite care, but also encouragement and counseling when I need a pick-me-up. At their yearly get together, I meet many others in my same situation, and Del Oro provides great guest speakers with practical ideas to help caregivers get through difficult times. Last year there were about 200 of us and they supplied a scrumptious lunch, lots of resource booths, and massage off and on all day! So wonderful! It didn't cost any of us a dime. I've got to tell you, that one day got me through about six months of caregiving!

So get on that computer and start surfing (shoot the curl!) for caregiver resources in your area. Look specifically for centers that provide financial and respite help. Please let me know if you find anything in your area and I'll let my readers know, too!

 Del Oro has been a huge blessing to us and hopefully you can find something just as beneficial!

MY ACHING BACK!

Once again I took a fall. This time it wasn't minimal. I broke my back. Yep...a compression fracture of L-3. When I do something, I do it really well! Needless to say, we have had to scramble to find help for Jamey.

Since he is now in the next stage of the disease, incontinence, we have had to hire people other than friends or family to help. Though it took a while and I was in a tither the first week after I got home from the hospital, people stepped up royally and we finally have most of our shifts covered. I will likely keep people on after I have healed, because the job has become more difficult for one who will always have back pain.

In order to keep you all from re-inventing the wheel, I'd like to share what I have learned about using a caregiver other than yourself.

MAKE LISTS
Right now, before a crisis, write down everything you do to help your Loved One. Things like lifting him out of bed and toileting. But even list the little things like, showering, shaving, making meals, cleaning up after meals, laundry, etc. Keep in mind your Loved One's ADLS (Activities of Daily Living) that they can or cannot do and be sure to account for those.

On another list, put down all your friend and family members who are able to assist you with even small items. Go down both lists and match up your friends and family members with the chores for which they are gifted or able to do best. For instance, my youngest daughter lives about 3 hours away. Even though she'd like to help with the every day jobs, she isn't able to because of distance. When we needed additional help, We set up an ad to hire caregivers. My daughter was able to take the responses from that ad and ask important questions to narrow down the many resumes. This would have taken me a great deal of time and energy (something I didn't have with my pain level). She was able to give me a much smaller list of candidates, and she was a valuable part of the team. My oldest daughter who lives close by, was happy to hand off that task to the younger daughter!

For the jobs that aren't appropriate for a friend or family member (things like toileting and bathing), move those to a new list for in-home caregivers. Think about when those things are needed. I know that's a difficult thing with PD; it varies from day to day or for that matter, hour to hour. Do your best. In our case toileting is an issue, but so is bedtime. I cannot lift, bend or twist while my back is healing, so getting my husband into bed is impossible without doing one or more of those things. Right off the bat, I knew I was going to need someone to come in between 10PM and 11PM to do that for me.

Other than what a professional caregiver can provide, continue to add to your list as things come up. Keep the list with you. When someone asks you what they can do to help, pull out your list. Don't be afraid or embarrassed. They asked--let them help!

Once your caregiver list is complete you can start asking friends of friends for names of caregivers. In my opinion, word of mouth is the best background check; it's free and dependable. Or you can seek out an organization that provides caregivers. (More about that below).

IN-HOME CAREGIVER RESOURCES
I have a mix of independent caregivers and caregivers who are provided by an organization. Here are some pros and cons of both.
Be sure and ask your Loved One if he/she has a preference in age or gender of his/her caregiver. Remember, they are used to you. It will be a difficult change for them. Try and be supportive. Make it as easy as possible.

Pros for Independents:

• Often able to charge less because they receive all of the money. 
• Often able to work a shorter minimum shift (1 to 2 hours)
• Often able to be more flexible
• They don't need to check into the office when they arrive at your home

Pros for Organizations:

• Receipt for tax purposes
• Background check is done
• Insurance is provided
• If you have a complaint you needn't talk directly to the caregiver
• If someone has to call in sick, they will send another caregiver

Cons for Independents:

• Rarely carry their own insurance (your homeowner's needs to cover)
• Won't write a receipt unless you ask (be careful about paying cash; while it's not your   business whether they claim their income, they need to know you will be writing off     this as a medical expense so they can be audited)
• If you have issues with them, you have to deal with them directly
• If they are sick, you will be without care that day
• Necessary to pay out a 1099 at end of year (have them fill out a W-9 before working)
• If you pay them more than $2000 you will need to take out their taxes for them and keep track of all other legalities.

Cons for Organizations:

• Often a minimum shift of 4 hours
• Pricing is high and caregiver gets less than half of the money
• Often have to wait a long time for them to get back to you when you request a caregiver
• If you cancel less than 24 hours, you still pay (This is actually a good rule, even for an independent. It protects them from losing money when you have a change of circumstance. I always pay my independents if I have to cancel in less than 24 hours. There isn't any way they can find a replacement job in that time).
• You will have to meet, perhaps multiple times, with the Supervisor and each caregiver you hire (depending on how you look at it, this might be a pro)

Some Reputable Organizations:

Home Instead

Visiting Angels

Right at Home

Comfort Keepers

Some Reputable Independent Sources

www.care.com

www.caring.com

Be advised, it is difficult to fill a 1 or 2 hour night shift. My husband has to go to bed an hour early to accommodate the help we have. Our situation is only temporary, however, we might have to do this from now on. In that case, his circadian rhythm may need changing.

Note: Since I am home during the times the caregiver is here, it was not as important to me to have a background check done. The caregiver will not be as able to take advantage or abuse my Loved One. However, if you would feel more comfortable to have a background check done, it is well worth the money for your peace of mind.

KEEP YOUR FREEZER FULL
When someone offers to bring a meal, but you already have one for the night, accept it graciously and put it in the freezer. If your freezer stays full you will have plenty of meals to fall back on when you're having a bad day. And you will have days when you don't have the energy to prepare a meal. Whether or not you eat, you need to feed your loved one a balanced and healthy meal.

USE YOUR CAREGIVERS!
Make up checklists for your caregivers so they have things to keep them busy. Time drags when you don't have something to do. With Parkinson's (and other diseases) you are not always busy constantly. If you have a checklist for Daily things as well as Weekly items, they can do things in between helping with your Loved One. Plan ahead and have meals ready to prepare. I have found that most caregivers love to cook, so give them a recipe and have them prepare your meals, either for that night, or for freezing. Crock pot meals are great because all you have to do is drop the prepared food in, turn it on and you'll have a hot dinner in a couple hours.

Let them do laundry and light housework. I have my Wednesday lady, take the garbage out to the curb for me because I cannot do it the night before (we have wild critters here that shred the bags and make it counter productive). ;) Today, I had one of my caregivers spot clean the carpet because I cannot get down on the floor right now. It looks great and makes me happy! She's happy because she didn't have to sit idle all day long.

SIGNS
Make up signs to hang over the washer, dryer, microwave and oven, telling how to use the machines. This will keep caregivers from making costly mistakes like putting laundry soap into the bleach receptacle (ask me how I know this) haha. Writing up the process for when the garbage should go out, whether you recycle, when groceries need to be purchased (or when they are delivered), etc., can make your job much easier as well. It's like managing an office. You need to train and delegate. If you don't do your job, they can't do theirs.

I'm sure I'll think of something more to add after I post this. But for now, these are the main things I've experienced since I broke my back. I hope this helps you navigate.

I have only one more question...
Which one of you daughters stepped on the crack?!

Echo...Echo...Echo...

I'm sure you've all heard about this cute little disc by Amazon (yeah, Amazon needed another money-maker), called the Echo Dot. While it is a creative new gadget, I didn't think it was much more than a fad or gimmick that would be of little use to us. I was wrong!

This thing has been a huge help to Jamey! Even though his words are not perfect, and he takes a little time to get to a question out, Echo is a great little service "animal". She adapts herself to the way he speaks and is able to accommodate him quite nicely! You can call her Alexa, Amazon, or Echo. Since syllables are a little challenging for Jamey, we set the device to answer to just Echo. Much easier for a stutterer!

During the course of the day, I can hear Jamey ask Echo a multitude of questions; What's the weather, can you play my playlist, What is my schedule today, What time does the movie start, What is the football/baseball/basketball schedule on TV? These are things for which he would normally have to use his keyboard (a difficult task for him), or ask me, and then promptly forget. Having answers at his tongue-tip is great, and Echo doesn't get upset if he has to ask her the same thing several times a day! If Jamey uses the last of an item in the house, he can tell Echo to add that item to the grocery list. It saves him trying to move a pen across paper, and when I get ready to do the shopping, I ask Echo what is on his list and add it to main list. Awesome!!

I think the best thing about Echo is her ability to keep Jamey's doctor schedule. Because of the short-term memory loss from the Parkinson's, he needs to be reminded several times a day if he has an appointment. Echo easily lets him know what's going on. She also alerts him when he needs to take his medication. She's a smart little cookie (maybe that's why she's shaped like one!). 😄

Jamey loves to learn, and Echo can tell him anything he wants to know...she pulls info from the internet faster than we can. And she has far more abilities we don't even use. But for now, I am impressed at what she can do to alleviate some of the stress of caregiving and disease. Although, I do get a little jealous that he talks to her more than me. LOL  I think this is a worthwhile thing to have in your arsenal of helper-items, and it is affordable for most everyone.

This has been an eye-opener, though. It turns out she's a better caregiver than I am--she'll even read him a bedtime story if he asks!

A Lot Has Happened!

Forgive the lapse in blog posting! We've had a lot of changes since we last talked!
Hopefully I'm back for awhile.

Moving households is difficult enough for people our age, but throw Parkinson's and stroke issues into the mix and you've got yourself a challenging situation, at best. In addition to the move (just 18 months ago), our oldest daughter got married and our youngest daughter and her husband brought us our first grandchild! All of this amidst constant construction to set up the mobile home for a power chair! Needless to say, it has been a bit stressful.

Parkinson's symptoms become worse when a stressful situation arises. Jamey has been quite the trooper, but we have seen the disease progress with this move. Now that construction is finally finished, and the place is set up well for him, we should not have to move again (barring unforeseen circumstances).

Because of the progression of the disease, we have had to purchase several new pieces of durable medical equipment.

INVACARE PORTABLE LIFT
Jamey cannot control his body well any longer. There are times when he cannot get off the bed or transfer from one chair to another. While he is in the power chair most of the time, he tries to get up and move when he feels he can. Unfortunately, that doesn't always work out the way he'd like. Sometimes he gets stuck. I'm not able to lift him any longer, so we invested in a portable lift. We looked into the Hoyer Lifts, but they do not currently make one that rolls well on carpeting, so we ended up with an Invacare lift (all his power chairs have been Invacare). At night, the sling comes off and we position the lift over the bed so that Jamey can grab the trapeze in the night to help reposition himself without waking me every time. It has been a huge help! It's also very quiet. I rarely hear it when he moves it up or down in the wee hours of the morning.

The lift came with a basic sling and there are many others you can buy. There is one with a hole in the bottom for toileting, one that reclines more, and one that sits the patient upright. There is also a sling for standing if that is required.

EZ-LOCK SYSTEM IN VAN
As I said, transferring is more difficult now, as is my ability to help move him. So, we had an EZ-Lock system installed in the mobility van. It's a V-shaped brace that attaches to the floor of the van and is wired into the dash. They also install a bar to the bottom of the power chair. When Jamey drives the chair into the van, he positions his footrest over the V and continues forward. The system grabs his chair and locks it into place. We pull the seatbelt that is attached for the back passenger, across his body and snap it into place. He is perfectly secure to ride anywhere now. We do not need to transfer him in and out! Just be sure the chair you have is compatible with the EZ-lock system. Go online to www.EZlock.net. They have a listing of compatible wheelchairs. You'll be hard pressed to find one that ISN'T compatible, but of course, ours wasn't! We ended purchasing another chair, too. LOL

Mobility Works (they have stores all over the nation) did all of the van work. They are a wonderful group of people and they will work with you to find the best solution for your needs. We used them when we lived in Santa Clara for our first van. Now we have to go clear to Sacramento for service. But, it is worth it!

INVACARE PRONTO M-61 POWER CHAIR
The unfortunate thing I found when ordering this chair, is that there is nowhere to go and look at the chairs, try them out, etc. Our insurance wouldn't pay for the chair this time (new rules for Obamacare) so we didn't have the benefit of going through Kaiser or having his Neurologist suggest a chair). Everything is done online with these, so you never know what you're going to get!

Jamey's last power chair was the Invacare Pronto M-41. For the most part, he liked the chair. In particular, the joy-stick/propulsion system was easy for him to work. There were a few things I didn't like about that chair. The biggest issue for me was the sound it made when it clicked into gear. For some reason, since my stroke, I cannot tolerate certain sounds; that was one of those sounds! I researched at least 20 chairs: Golden Compass, Pride, Nutron, Bruno, Invacare, and more. We kept coming back to the Invacare because we've had such great luck with them. It has a very tight turning radius and the seat elevates so that Jamey can reach things on shelves and then go back down again. It allows him to be a little more independent. AND, they have fixed the sound issue on this new chair! Woo Hoo!

When researching, I asked Jamey what he MOST wanted in the new chair. He listed several things. Then, I measured his current chair so that we were sure to get something similar in size (and it would still go through the newly widened doors). I made a spread sheet of all the features (including sizes) of each chair and then we looked over the list and narrowed it further. After we had about 3 chairs in the running, we went to EZ-Lock's website and checked their compatibility list. Once we decided which chair, we placed a call to Spin Life (www.spinlife.com) and talked with a sales rep personally. Because we needed White Glove service, I didn't want to order online. As it is, we also needed to order accessories for the chair, too, so it worked out better to speak with someone personally. They were very helpful and the chair arrived within two weeks.


FRENCH DOORS AND RESIDENTIAL LIFTS
The only way in and out of the new mobile home (for Jamey) was through a very narrow laundry room door. It was not convenient, nor was it safe in an emergency. So we had two sets of French doors put in; one in the front, off the carport, and one in the back. We ordered two residential lifts so that he could get out easily, without my help. We also had a deck built off the back lift. When it isn't raining, he enjoys spending time out there.

The lifts are a must-have for independence. With a ramp, you are required to have 1 foot of ramp for every 1" of height. In other words, we would have had to have a 27 foot ramp to accommodate the height of our mobile home. That would have been ridiculous, turning back and forth on itself around the yard! LOL Plus, by doing a residential lift, we saved $200 for a permit. None needed for a lift! Our lifts were affordable at around $6,000 (one was used and refurbished so a little less). The model we chose is Mac's Lift PL-150. Works like a dream!

OTHER CONSTRUCTION
Here are some of the other things we've had done to help Jamey move around the house.

A) We opened up the master bath by taking out the door between the commode and the sink area, combining both sinks into one and freeing up the entire area against the back wall.

B) Widened all doorways to 32" (would like to have done 36" but not enough room in a mobile home)

C) Built island bar so Jamey's chair can slip under for eating.

D) Had patio built and extended from lift area so he can go from back lift all the way out to the front of the mobile.

E) Cleared out several walls to achieve a more open floorplan to accommodate power chair.

Well, as you can see, there has been a lot to take in. But, I think we're getting settled and it's so nice to have a guest room where the kids (and now, grandkids) can come visit!