Tag Archives: God

Strange Things Are Hapnin’

Day by Day with a Movement Disorder Posted on by 2

I went to my Neurologist last Friday, and I explained to him all that had been going on the whole time I was trying out the Zelepar. He agreed that the medicine had not received a fair chance at working. So, he gave me a prescription for it, with instructions to use if for a month. If I was not pleased with the way it relieved my symptoms, I could then add the Requip I have taken before back to my schedule. Now that my digestive system is behaving, I told him I thought I could handle the Requip just fine.

Of course, being the little town that ours is, our Pharmacy didn’t have the Zelepar in stock. He has to order unusual medicines, but they come the next business day, and that works OK, most of the time. Of course this was Friday afternoon, when we dropped off the prescription, so I was without all weekend. I did the only thing I knew to do – I used the Requip I already had. My tummy didn’t complain a bit, either.

My throat is still irritated, and I finished the antibiotic today, so I’m thinking I’ll see if the nurse will swab my throat again, or just refill the prescription. I’m not convinced that the strep is gone, and I can’t afford a relapse. I had rheumatic fever as a baby, so my heart is particularly vulnerable to strep infections.

I’m feeling good about the medicines Dr. S. has me on for the Parkinson’s now, and I’m sure my GP will take care of my throat, so things are settling down for me.

It’s just as well, because Daddy continues to decline. His arm is much better, thanks to the arm band, but his mind, and his body in general, continue to go down hill. We’ve had some difficulty all along getting his bowels to move, as one might expect from a 101 year old. I was using the glycerin suppositories I had to help him go, plus he is on Colace as a stool softener. The last time I used the suppository, it didn’t help, which I thought was strange. So, I figured, since I use two of them, I’d use two on him. To my surprise, I discovered the first suppository still in place – not melted in the least! His body temp is so low that it didn’t dissolve!!

So, even though I had been trying to put it off, I felt I had to call the Hospice Nurse, and request help giving him an enema. The enema was an ordeal for him, but it helped. That was yesterday. Today, his strength is noticeably less, and his confusion is noticeably more. His mind and body just can’t cope with any kind of assault now, even if it’s for his own good. Going to the Orthopedist sent him downhill, and the enema just pushed him that much further.

I can only pray that I will do well on the Zelepar, or the Zelepar and Requip combination, as I think it’s clear that Daddy has taken a definite turn for the worse. In God’s good time, this will all work out. I just have to take one step at a time, and leave the end results to Him.

Amniotic Fluid – Source of Stem Cells?!?

Day by Day with a Movement Disorder Posted on by 13

The breaking news that scientists have been able to isolate stem cells in amniotic fluid and placental tissue is quite exciting! Not only have they recovered these cells, but they have already been successful in the lab in growing them into various tissues. The research will have to continue for some years, more than likely, so it’s not as though PWP (people with Parkinson’s) are going to be able to order up a cure any time soon.

This whole stem cell research area has been an issue I have always had very mixed feelings about. I’ve never been able to feel comfortable with the embryonic stem cell approach that many have endorsed, because in my estimation of it, this type of research would eventually lead to intentional creation of human embryos just for this purpose. I consider that immoral.

Amniotic fluid and placental tissue, on the other hand, have no such possible misuse concerns that I can imagine. I also understand from what I have read that the embryonic stem cells tend to cause tumors when implanted, whereas the amniotic and placental tissue cells so far have not been found to have that flaw.

Right now scientists are working with only 21 embryonic stem cell groups. With amniotic fluid as the source, scientists would have hundreds or even thousands of genetic strains of stem cells that could be matched, according to today’s news, with 99% of the population of the US.

Just think of the implications for those with spinal cord injuries, Parkinson’s Disease, Alzheimer’s Disease, and many other neurological disorders!!

Yes, I have Parkinson’s Disease, but it looks like I may be one of the fortunate ones who will live to see the day that doctors can cure this terrible disease, instead of just trying to alleviate symptoms. Thanks be to God for this unspeakable gift!!

Christmas Eve

Day by Day with a Movement Disorder Posted on by 8

I continue on the full regimen that the Gastroenterologist has me on, so far with little success. I did manage to eat a baked sweet potato last night without any pain afterwards, so I consider that an improvement, anyway. They are full of vitamins and fiber, so they make a good small meal for me right now.

We went on our Date Day Friday and bought a few things at the only Estate Sale open in the whole city! By the time we got there they weren’t crowded, and much of the stuff had been sold, but we did manage to find a few little things that I think will sell well. Plus, I have a thing for real hankies. I can’t stand to use Kleenex tissue! I like a real, soft, cloth handkerchief on my tender nose. So we’re always on the lookout at such sales for old hankies, and we found what appear to be some brand new ones. I was glad to get them.

We piddled around a few hours at the nearest Thrift Store and at Walmart, ate a grilled chicken sandwich at Chic Filet, and then we went to see The Nativity Story movie. I thoroughly enjoyed it. The scenery and the detail of all the activities going on in the background are supposed to be very authentic to the time period, so I found that part fascinating. As to the plot, they did a good job of presenting the whole thing in a believable way, clearly portraying the disdain of, and even shunning by, their neighbors of this young couple who had “not waited the alloted time before having sex.”

The harsh journey to Bethlehem was dramatic, but maybe a little too long time wise, but certainly worth it for the story line. It was a relaxing few hours that helped to emphasize the true meaning of Christmas. I was very glad we went to see it.

Being able to look forward to these times to “escape” care giving have been a Godsend. It’s funny in a way. The lady who stays with Daddy for us lives with her own elderly mother. She’s always glad to be able to get away from her for awhile! LOL! And here we are, paying her so we can get away from Daddy for awhile. But Daddy never asks her to do anything. As soon as she’s gone, he starts in with his list of things for us to do. It’s really funny, as long as we’re rested and in good humor.

So, here I am, in the early hours of Christmas Eve morning, writing this post. Frances will be coming this morning, so I will get to go to church today, thank goodness. I need that right now. I’ve missed my church family lately more than I realized, but we’ve always been regular attenders, and I’ve been out so much this year with my own illness, and now Daddy’s, that I’m losing my connection to them. God meant for us to assemble ourselves together, and not to worship alone all the time.

So I’m looking forward to seeing my friends in Sunday School and worshiping together in Church today.

May God shower his blessings on each of you through this coming year, and may the Glory of the Christ Child shine all around you. Amen.

I’ve Lost Christmas!

Day by Day with a Movement Disorder Posted on by 10

Ya know how sometimes it’s too warm when you should be Christmas shopping, and it’s just hard to get in the mood? Well, something like that has happened to me this year. First, we have had shirt sleeve weather, which doesn’t help the situation any, but that’s not really the problem. It just doesn’t feel like Christmas to me this year.

We’re not going to see either of our daughters or their families this weekend. We didn’t decorate our house, because we haven’t been there enough to do it, nor to see it if we had. We put a tiny tree up in Daddy’s living room, but that’s it. Our only Christmas shopping was over the internet, so we haven’t been in any of the crowds, nor had the fun of looking for all the little stocking stuffer unique oddities that our grown kids and grandkids look forward to. I’ve even missed all the Christmas programs at church.

Oh, we’ve had the songs on the radio, but they start that way too early, so it loses its effect. My Sunday School Class did come by here on the way to their Christmas party and sing Christmas carols to Daddy. That was about as close to feeling like it really was Christmas as I have felt. In the vacuum of taking care of Daddy and trying to take care of myself, it just doesn’t feel magical this year. And that’s very depressing. There, I’ve said it out loud. Yes, I am depressed this Christmas, a feeling I have never experienced before on such a joyous holiday.

I never meant, when I started this blog, for it to turn into a place to wallow in self pity, but it sure seems more and more that’s all I’m doing. I guess I could make excuses and call it therapeutic LOL. All I wanted to do was keep a running record of what it was like from day to day, for my own sake, and possibly to benefit someone else going through similar experiences with Parkinson’s.

I was also hoping that by posting regularly, my keywords would attract other PWP through the Search Engines, and I could enjoy some conversations with other people going through the same things I am. That hasn’t happened, either. Maybe it will in time, but right now the Page Rank of this blog is still zero. It’s hard to move up through the Google ranks, and it takes time and patience.

So we take one day at a time, each one feeling pretty much like the day before, expecting the next to feel pretty much like today. It’s a care giving rut that leaves no end in sight, because only God knows the outcome of all this. All we can do is our best from moment to moment.

Arrangements Are Made

Day by Day with a Movement Disorder Posted on by 2

I talked to Frances last night, and she can stay late Friday evening, in case traffic runs us late getting home from the doctor’s, and she can stay with Daddy on Tuesday. So I’m all set to keep both of the doctor’s appointments. I’ve been doing a lot of searching on the Internet, and it looks like the Insomnia is just another one of those Parkinson’s symptoms that a lot of people get, but most people don’t know about. Let’s face it. The only thing most people know about Parkinson’s is that you shake, right? And I don’t even do that! LOL!

My dear sweet hubby went all the way to Birmingham yesterday to grocery shop, just so he could get me some Soy yogurt. I was rationing the little bit we had left from our last stop in town, and he knew it. So now I have enough to have one every day for awhile. They’re full of cultures, taste good, and my tummy doesn’t complain. That’s a good combination for me right now.

God gave me an angel in disguise when I “found” this wonderful man. We met at church, too! He’s a gentle soul, who would do anything in the world for me, and I feel the same way about him. We’ve been deeply in love with each other for 46 years now, as it was surely love at first sight when we met. I can’t even write this without getting tears in my eyes, just thinking about him.

God has been so good to us, with two wonderful children, two fine son in laws, and three great grandchildren. I need to spend more of my time being thankful for all the blessings in my life, instead of dwelling on my present discomforts.

I think about all the horror stories on the evening news, with children being beaten to death by their own mothers and put in microwaves, and it makes me realize how very fortunate I am to love and be loved by so many family members. I take so much for granted, and that’s a sin that I need to repent of and make a conscious effort to cleanse from my life. Thank you, God, for your very near presence with me today. Amen.

Ahhh To Sleep, Perchance to Dream

Day by Day with a Movement Disorder Posted on by 7

Thank goodness for Ambien. I called my Neurologist’s nurse yesterday and explained the situation with Daddy. She called in the prescription, and I had a good night’s sleep last night, for the first time in a week. Whew!! That felt good.

It will take me a few days to get over being so tired, I expect, but getting a good night’s sleep will make a world of difference in what I can accomplish without being totally exhausted. Maybe I can even get back to practicing my Tai Chi in Daddy’s living room. After going to all that trouble to learn it again, I sure don’t want to forget it. And it’s good for my balance and stamina, too.

I’ve been reading some articles lately that say Pilates is good for PWP (people with Parkinson’s), so that may be the next thing I look into. I haven’t been able to figure out from what I’ve read if these were specially modified Pilates classes or not. Of course, it would make a big difference if they were. Speaking of PWP, I’ve also found that Parkinson’s folks call themselves Parkies. Ain’t that cute? So I’m a PWP and a Parkie now.

One of the Hospice people tried unsuccessfully several times yesterday afternoon to call us from her cell phone. We live in the middle of nowhere, as far as cell coverage is concerned. “Can you hear me now” just won’t work out here. In fact, we had Verizon, and dropped it, because we couldn’t get it to work at all LOL. She never did come, and we never did get to talk to her, either.

I’m considering ordering DSL for here, so I don’t have to depend on my cell phone while I’m on the computer. Plus, for some reason, the program our church uses for editing our website just won’t let me FTP from here on dialup. It works fine at the house on DSL. I’m the church webmaster, and that has to be updated weekly.

As you may be able to tell, I’m in a pretty good mood today. It’s been over a week since he fell, and we’ve developed somewhat of a routine. Now that I know I will be able to sleep, I feel like we can handle whatever comes, between the two of us. We’ve had plenty of care giving experience, and we have Hospice for support. Our daughters and church family will help where they can, and we have our faith in God to hold us in the good and the bad times. What more could we ask.

Your prayers and kind thoughts are always appreciated, too. The effectual fervent prayer of a righteous man availeth much!

Tai Chi & Flu Shot – Taking Care of Myself

Day by Day with a Movement Disorder Posted on by 2

I went for my Tai Chi lesson yesterday, and I’m finally beginning to show some real improvement. My balance is a lot better, and I can go for the whole 30 minute session without a break now. We went through the whole form several times, with lots of practice on some of the transitions that I have trouble with. It really doesn’t matter what he chooses to work on, as it’s all good for me. I really like the Sensei. He seems to have an uncanny ability to gauge just how much to push me and when to back off. I guess that comes from years of teaching. All I know is he’s good at what he does.

The lessons are not cheap, because I couldn’t find a group class anywhere close enough. But then, my medicine isn’t cheap, either. I would recommend Tai Chi to anyone who needs to exercise, but is afraid of anything strenuous, because of health issues. You’ll get a good workout, but it will be at a pace that your body can slowly adapt to. Plus, it leaves you in a very relaxed state of mind and body.

I also got my flu shot yesterday, too, at my Neurologist’s recommendation. I took two Tylenol when we got in the car afterwards, and I haven’t had any problems from it at all.

So, I’m continuing to work toward strengthening my body, taking care of myself, and getting back to as normal a routine as I possibly can. I’m house cleaning more, which is good exercise in itself, walking more, and generally feeling like my old self. I thank God every day for giving me that day of normalcy, and I no longer take anything for granted. I pray that I can continue to stay in this attitude of gratitude.

Thankful to be Used by God

Day by Day with a Movement Disorder Posted on by 4

The last few days have been wonderful, with no problems of any kind. I’ve been exercising as much as I possibly can and catching up on some housework and eBay work that’s been put aside.

I’ve been glowing from the experience we had while on our Date Day Friday. While following the directions from one estate or yard sale to the next, we had trouble finding one address. We had about decided to just skip it, but DH happened to see a sign in the local grocery store window, advertising the estate sale. I had read the directions wrong. So, we tried again and found the house. There weren’t any cars parked around it, and we had to ring the doorbell. An older woman answered the door and invited us in to a house full of stuff in every room. But instead of it being things you would expect to be hers, it all seemed to be the kinds of things a young man would have.

After we looked around a few minutes and oooed and aahed over the beautiful old woodwork on the old home, she began to get talkative. She told us all about her son, who had lived in the house for about a year, before he had a seizure, fell in the front yard late one night while walking his dog, and ended up having five back surgeries that left him a paraplegic.

He had to move in with his parents and sell his home and his possessions, so his Mama was doing the selling. She was obviously upset as she related his story. She related how he was still having difficulty adjusting to this drastic change in his life, which seems pretty reasonable, under the circumstances. Of course, I was using my cane, so when I told her I had been diagnosed with Parkinson’s she talked even more about how emotional he had become. I suggested he visit Wheelie Catholic, as Ruth has such inspirational posts and could find people in similar circumstances for him to talk to. She seemed very grateful.

We didn’t see anything we wanted to buy, but we stayed there a long time, talking and mostly listening, because she really needed to talk. Both of us felt like God had led us straight to her. Our past experiences as caregivers, my current situation as someone newly diagnosed with a debilitating disease, and the similarity of our ages, all made her comfortable opening up. She cried a little and talked a lot, and we promised to pray for her son.

It was a perfect example of God working all things for good, and it has left me with a very thankful heart that we were able to be of help to this sweet lady, struggling to help her son, and yet feeling so helpless.

All’s Well with My World!! Glory to God!!

Day by Day with a Movement Disorder Posted on by 9

I went to the Neurologist Thursday morning, and reported to him about the Endoscopy and Monday’s visit to the Gastroenterologist. I told him about the Zelnorm, and how it is definitely helping. I also told him about the hair loss, and he said if it continues he’ll try to help with it on my next visit. He agreed that it was time to take me off the Sinemet YAY!, and go on just the Requip, which is what I was hoping he would do. So I don’t see him again for three whole months! I feel like a free woman!!! Requip is taken with meals, so no more of this hour ahead stuff, and it doesn’t have any dietary restrictions, either, so I can eat what I want with it. My gastro doctor has put enough restrictions on my diet as it is, so I’m glad to not have more added to those from the PD meds.

Thursday was my DH’s birthday, but I couldn’t get him to spend any money on himself at all. I was hoping there would be a movie he wanted to see, but no such luck. Then I tried to get him to buy a book or a CD, but he wouldn’t do that, either. So…. I needed to get a pair of walking shoes, fitted by a knowledgeable salesperson, something I had researched on the Internet as being good for Parkinson’s patients, so we ended up spending money on ME LOL. He did let me take him out for a nice lunch, though.

I found out in my research that walking shoes don’t break on the sole in the same place that running shoes do. Since PD folks have problems picking up the foot and putting it down properly, with the roll that everyone else takes for granted, this is important. I was used to wearing running shoes, and I could tell the difference immediately. It really felt odd, and will take some getting used to. It changed my whole sense of balance at first, I was so used to the old shoes.

So this is a post I’ve been looking forward to making. I’m feeling good about my medicines, my stomach is improving, and I’m at a point where I feel like I have a handle on the Parkinson’s for now. Now I just want to proceed with life as normally as possible for as long as possible, enjoying every minute of it, knowing that the time will come when things will change. I feel so fortunate that this disease is progressing slowly for me. This warning time gives me the opportunity to glory in just being alive, and I thank God for every minute of it.

Am I in Denial?

Day by Day with a Movement Disorder Posted on by 2

We had our usual Date Day yesterday, and had a good time, as usual. It was windy and cold, and I was bundled up. DH was in short sleeves, enjoying the brisk fall weather. We’ve always been at opposite ends of the hot natured, cold natured spectrum, and it looks like the PD is just going to make that worse :).

We found a few good buys, but at one of the estate sales we found one of those deluxe model walkers with the padded seat and all the extra pockets that really looked brand new. The daughter selling everything said her mother had only used it a few months, and that’s exactly what it looked like. She didn’t want much for it, as I’ve been pricing them, and I knew it was a good buy. So, even though I don’t need it now, we bought it.

As we paid for it, she made some remark about how I was going to enjoy using it, and I replied that I couldn’t really say I would enjoy using it, but I knew that I would eventually need it. My DH went on ahead to the car, so he could figure out how to pack it away, and when I caught up with him, he had tears in his eyes. I, on the other hand, was totally unaffected. When I asked him about why he thought it was bothering him so much more than it did me, he answered that maybe he loved me more than I loved myself.

That’s a load to think about for sure! It did get me to thinking that maybe all my “busyness” reading about Parkinson’s and writing this blog is somehow a way to block out my emotions about it. I don’t know. All I do know is that for right now I’m honestly not upset by all this. It’s certainly not because I haven’t read about how horribly debilitating it can become, because I’ve read plenty of that. All I know is that I’ve laid it in God’s hands, and I’m trusting Him to make the best of whatever happens. I do pray daily that my DH will find some peace about this whole situation.