Tag Archives: prayer

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!

Continuing to Feel Good

Day by Day with a Movement Disorder Posted on by 2

I felt better for a Sunday than I have in some time. All the exercise is beginning to pay off, I think. Usually, by the time I’ve cleaned up after Daddy and fixed his cooked Sunday morning breakfast, I’m already tired. Then the long sit through Sunday School and Church just leaves me drained for the day. That didn’t happen yesterday. I had plenty of energy. My body still cramped some in church, but not as bad as usual. I’ve stopped carrying the cane to church, too, so I’m feeling much more normal. Everyone’s still good to ask about me and let me know that they are praying for me, which I really appreciate.

I didn’t do so good a job of staying off the computer yesterday, even though I really did mean to. This is going to be a hard habit to change, and the difficulty of it just convinces me that it has reached the compulsive point. I’ve gone through all my usual daily computer tasks already this morning, and I’ve taken a set of pictures for an eBay listing already, so at least I’m being a little more efficient.

We’re taking Daddy to the Podiatrist today, so that will get me away from the computer for awhile. I’m going to see the Podiatrist, too, this time. I made the appointment several months ago, thinking I would keep it if the diagnosis was Parkinson’s and cancel it if it weren’t. What with the Peripheral Neuropathy, and some very deformed toenails already, it just seemed like a good idea to touch base with him. Daddy sees him every three months, as he’s a diabetic, but I don’t expect to see him but maybe once a year, unless he tells me otherwise.

I’m noticing a gradual weight loss, which suits me just fine. I’ve just about cut out all sweets, and my portion sizes are much smaller than they used to be. I really don’t feel like eating very much at one time any more. I’ve cut out the in between snacks, too, for the most part. And the meal at night is usually very small – sometimes only a banana. I just don’t get hungry at night any more. We eat our big meal at lunch now, and my dear sweet hubby, who does the cooking, makes sure it’s a very nutritious meal. I’m overweight, anyway, which puts extra strain on my legs and balance, so I hope to continue to lose weight gradually for some time.

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.

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.

Telling People I Have Parkinson’s

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Today in Sunday School I told my friends that I have Parkinson’s. There were a few gasps, and a few saying at least now I know what’s wrong, but everyone was very supportive and tried to be very positive. We even had a special prayer time for me and for my DH, who has the burden of seeing another care giving task in his future. That part of this disease bothers me more than anything else. We thought we would be through with our care giving when my Daddy finally passes, bless his heart, but now it will just start all over again for him at some point in the future.

We can only hope that new medicines and maybe even a cure will be found by the time I am at the stage of needing full time care. I choose to be optimistic and believe that the meds are going to delay the debilitating stage for me for a long time. I am exercising and eating well balanced meals, as well as getting plenty of sleep and drinking plenty of water, too. I hope to be starting the Tai Chi classes soon, as well. If there’s anything more I can do, I will do it. And above all, I know that God loves me.

I’ve already told my dear sweet hubby that I don’t expect him to keep me at home the way we were able to keep his dad and my mother. He will be a lot older and he’ll be doing it by himself, so there’s probably going to be a point where he just can’t do it all any more. I wanted him to know that I understand, but it just upset him to hear me talking about it, and he made me change the subject. I’m going to be praying a lot for him, that he will be strong through all of this. I love him so much.

My Prayers Have Been Answered!!

Day by Day with a Movement Disorder Posted on by 2

I’ve been going to doctors for years with strange symptoms that came and went, that they never could explain. Most of them were attributed to stress, which made sense, but I was never satisfied with the diagnosis. Today, the Neurologist officially gave us the diagnosis of Parkinson’s Disease, and even though that can mean years of debilitating illness, it doesn’t have to be that way. Every PD patient is different. I’m just so relieved to have an explanation for what’s been happening to me, particularly for the last year, that I have been celebrating all day long. Now I have an enemy I can fight!!!

Doctor S has given me the directions today for weaning off of the Sinemet and changing over to Requip, which is a dopamine agonist. There’s no way of knowing if I will be able to use it instead, without trying it, so the next 4 weeks will be another trial. Sinemet is the gold standard of PD meds, but it only works for a limited number of years, before the side effects cause as much trouble as the PD does. So they try to delay starting “younger” patients like me on it, if they can help it. (I don’t call 63 younger LOL)

We also asked about exercise, and he said for me to walk for 30 minutes a day for 4 days a week. From my reading I’ve found that Tai Chi is good for Parkinson’s patients, and I’ve already had some training. I went to the gym on the way home today and talked to the Sensei about giving me some private lessons two days a week for 30 minutes to help me build my balance and stamina again. And Dr. S said I need to do some weight bearing exercise, too, so I’ll be getting back on the mini trampoline, too.

Today is a new beginning for me in a very real sense, and I thank God that I have been diagnosed early, so I have time to improve my health as much as I possibly can. I thank you all for your prayers.

My Arms Were Swinging This Morning!

Day by Day with a Movement Disorder Posted on by 1

Such a little thing, that we take for granted, and don’t even notice … when you walk normally, your arms swing quite naturally at your sides, without any thought on your part. Well, that’s not the case for someone with Parkinson’s, and it hasn’t been that way for me, either. In fact, I have tried to consciously do it, and I couldn’t remember how to coordinate it at all.

Daddy has a long hall at his house, and I noticed for the first time this morning when I walked down it that my arms were swinging again, quite naturally. This is quite an accomplishment, and is sure evidence that the Sinemet is working.

I go to the Neurologist tomorrow, and I’m very excited about seeing him. I’m hoping for a definite diagnosis this time, so I can get down to the business of dealing with handling the meds and my GERD. I’m still having a lot of trouble with that, but I have the Gastroenterologist appointment Friday. It seems to all be coming together.

I’m praying for some definite answers. I realize that Parkinson’s is not something anyone would want to have, but knowing is better than not knowing, any day, IMVHO!

I Don’t Want to Jinx It, But ….

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I think I’m better! I didn’t dare write anything yesterday. In fact, I was in a bubble of enthusiasm all day, afraid to say the words out loud, for fear it would burst the bubble, and my legs would feel like two ton weights again, slogging through mud.

I’ve been on the Sinemet since Monday night, and I woke up yesterday walking amazingly better. I wouldn’t call it normal, but for me, it was a vast improvement. I was also aware of being happier than I have been in quite some time, but then who wouldn’t be! I noticed that even my upper body movements were faster, which I really hadn’t realized had slowed down.

I think I spent every spare minute all day long thanking God for this miracle. I really over did the physical work, though, as there were so many things I’ve put off doing, because I just haven’t been up to it. I’d work for awhile, and then rest, and then work awhile longer. My leg muscles are telling on me today, for sure, but I’m proud of what I was able to accomplish yesterday.

We didn’t tell anybody at church last night, and I still used the walker. I don’t want to say anything until we get an actual diagnosis, and that will be on my next appointment. From what I’ve read, Parkinson’s symptoms can fluctuate, so one moment can be better or worse than the next, so for now I don’t want to have to explain.

We have decided that if we don’t find one of those adjustable canes with the extra legs on the bottom at an estate sale tomorrow, we’re going to buy one. At the rate I’m going, I may not need the walker much longer. My balance is still not good, so I’ll use the cane, and we’ll keep the walker in the car, in case this doesn’t last. That’s the plan for now, anyway. The balance thing is probably from the Peripheral Neuropathy, anyway, and I don’t think he can do anything about that, except to monitor it to see if it progresses or improves.