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.