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.