GREAT NEWS!!! - My New Diagnosis Is ESSENTIAL MYOCLONUS!!

I finally got to talk to a nurse on Dr. Watt's staff today, and I now have an official diagnosis that I can take to insurance companies. I do not have Parkinson's, nor anything in the Parkinson's Family. I have what is called Essential Myoclonus. It is not a progressive disease, which is the best news of all.

They do not know what causes it, but the Primidone is doing a remarkable job of controlling my movements. So I look forward to continued improvement and taking my life back! I asked if it would be OK to add an extra half tablet in the mornings, because the dose wears off in the afternoons, particularly if I am more physically active or stressed. She gave me the usual precautions about not using it if I became overly drowsy, be careful about driving, etc., but they are leaving the timing and use of the half tablet up to me. I am to start it in the mornings and then move closer to lunch if I want to try it there after a week or so.

I have been telling everyone about how wonderful I have been feeling since I went on the Primidone and how truly blessed by God I feel. I have strong emotional ties to lots of online Parkie friends, and I would only wish that they could have such good news from their doctors very soon. I guess I'm going to have to add another section for research about Myoclonus to my sidebar now, and come up with a better name for this blog. I have been very active in the Parkinson's PatientLikeMe forum, but I imagine I will be spending more time in the Essential Myoclonus section of WeMove.com now.

I lived in their world for almost three years, so I have a perspective into what it is like to have Parkinson's that most people can never have, unless they actually have the disease or are very close to someone with it. That is a valuable perspective that I do not want to squander. I'm not sure how God can use me in regards to this, but I'm sure in His good time it will become apparent.

I have tried to chronicle my journey from the very first days of the initial diagnosis of Parkinson's, through all the struggles I had with my digestive system fighting against the PD meds, to modifying my lifestyle to keep me safe, to the onset of tremors that soon turned into horrible shaking. I've tried to present an accurate picture of what was happening to me emotionally, as well as physically.

I am proud of this blog and hope that it will continue to be helpful to those who read it. May God use me and this blog to good purpose.

Getting Back to "Normal" and Doing Some Soul Searching

I didn't have any lasting bad effects from the Physical Therapy last week, and my neck continues to improve. The pain is essentially gone, although I do still have some stiffness, and certain activities still hurt. At least I am not hurting when I'm doing nothing!

I continue to limit my reading about Parkinson's, but it sure is hard to intentionally stay away from Parkie friends I value so much. I had intended to stay away until I had the appointment with the Movement Disorder Specialist (MDS) in April, but I just couldn't do it. They are too much a part of my life now. If I am diagnosed with something besides PD, I plan to keep up with them anyway. I did stay active in the Alzheimer's caregiver forum I belonged to for quite awhile after our parents died, but I did finally quit visiting. Life moves on eventually.

I had another choking episode with a pill a couple of days ago that was really bad. That particular pill burns in the mouth, for some reason, if it doesn't go down right away, and it burned in my throat when it got stuck. I ended up with a very sore throat that lasted until the next day. So, again, I've gone back to doing what my Gastroenterologist told me to do. Taking the pills in apple sauce instead of water makes all the difference. I'm just being lazy, and dealing with a heavy dose of apathy right now. That's the only way to explain that it's easier to get a glass of water than to open the fridge and get out the apple sauce and a spoon. I have gradually stopped doing several things he told me to do, and I need to get back to the straight and narrow, for my own sake, and my hubby's. He worries about me so, often without good reason, other than he loves me. I must try to do all I can to keep from getting myself into situations like this that scare him so.

There was a post on Patients Like Me today that has me doing some heavy thinking. Basically, it was about how many Parkies avoid being around those PWP who are farther along in their stage of the disease, because they do not want to be confronted with their own possible future. I know I fit in that category, as I have intentionally not even tried to find a support group, and I have turned down some invitations to meet some online Parkie friends who live in Alabama, too. It's one thing to read how they are doing, but quite another to see it for myself. I know that's the way I would react, because I freaked out when I first looked at a free DVD I ordered that had real Parkinson's people doing exercises. I haven't watched it again. It does help, knowing that other PWP feel this way, too, but it's not fair for those who are farther along, who are missing the support they need. It's a reaction I'm going to have to work on, but not until after I see the MDS.

As it always seems to be, I get better in one area and regress in another. I guess that's normal for everybody, right?

My Thanksgiving Prayer

This Thanksgiving will be our first without any of our parents with us. It's the first Thanksgiving where our older daughter and her hubby take over the reins of being hosts, passed down from my Grandmother, to Mama, then to me, and now her. It's a reminder that as things change, they really stay the same. It's a reminder of how very important family is. And how important friends are.

It's also a reminder that I am no longer the caregiver, a role I held for much of my married life. But now, I am "the sick one" in the family. Parkinson's Disease does not have any cure in sight yet, but only ways to manage the symptoms, with varying degrees of success and often horrible side effects. It is progressively debilitating, which I'm daily reminded of, as I talk to so many PWP who are so much worse off than I am. I see it in the difference in what I can do now, compared to last Thanksgiving. But, I am so very thankful that I am still able to walk, talk normally, write fairly legibly, use the computer without problems, that my digestive problems are calming down somewhat, that I am sleeping better, and that I am mentally still ME. I pray that I can still say that next year.

You dear cyber friends, who have been a listening ear as I chronicled this journey, you will never know how much you have helped me deal with all that has been going on this last year. You have helped me give voice to my reactions to this disease. I can't thank you all enough.

I pray that you will all have as wonderful a Thanksgiving as I will, surrounded by family, wrapped in love.

Amen

Can't Take Meds I Used to Take

I've been working out in the yard a good bit lately, as part of my exercise. I've made some headway with our yard, but I've also come in contact with poison ivy somewhere along the way. I am extremely allergic to it, so I'm broken out over a large part of my upper torso, front and back, on my neck and face, and even in my hair. I have no idea how that happened. We have new cats outside, too, and I may have picked it up cuddling them.

So, I pulled out my trusty Benadryl, in addition to the topical anti-itch meds I always have on hand. Benadryl makes me sleepy, so during the day I've always used something like non-drowsy formula Sudafed. When DH went to the store he couldn't find the exact same Sudafed I was about out of, so he took what appeared to be a similar medicine to the Pharmacist to make sure it was OK for me to take it. He made sure he told her I had Parkinson's, and she said it would be fine.

I hadn't even thought about checking for PD drug interactions, so I'm glad hubby did. Particularly since I did take one dose of the 12 hour Sudafed with Pseudophedrine Hydrochloride in it this morning, and I've felt yucky all day long today. When I looked on the new box to see how many to take, despite the fact that DH had asked the pharmacist if it was OK, there in fine print, among the list of conditions that made using it unsafe, was - you guessed it -- Parkinson's. The same warning was on my old box of meds, too, and I hadn't even thought to look. That's BAD.

So, I called our local Pharmacist to double check, and sure enough, I can't take it. DH has gone there now to get Chlorotrimiton, which has nothing but an antihistamine. It doesn't have any decongestant in it. My Zelepar is in the MAO class of drugs, so I have to pay attention to things like that.

As careful as I am to check on drug interactions with prescriptions, it never occurred to me to check out these over the counter meds, as I've taken this combination for poison ivy for years. BAD GIRL, BAD GIRL!!

I've hopefully learned my lesson, though, and will not let old habits take over again. Cause the old gray mare ain't what she used to be!!

Waiting, But Not So Patiently

My Gastroenterologist is a very busy, very dedicated man, for whom I have the utmost respect. I know for a fact that he works long hours, because one of the times I went to his office lately, they couldn't find my chart. Then the nurse pulled it out of a big duffel bag full of files, and told me those were the ones Dr. B had taken home that night to work on. He had been reviewing my whole chart, hoping to find a pattern in my symptoms that would help him decide on a course of action. I had no idea that doctors took their work home with them. Considering they get calls in the night for emergencies, I always assumed that they tried to leave their work behind as much as possible when they went home.

So, I'm trying to be patient as I wait for him to call me back. I reported in to his nurse last week to let her know that the cleaning out he had me do with the GoLytely did not stop my problems with elimination or with the bloating and gas. She told me then to check back this week, after I had stopped the Amitiza, to see if that would help. Well, I called her Tuesday, and left a message that stopping the Amitiza did not change the problems. I didn't hear from her, so I called again late Wednesday afternoon, as she is usually so good about returning calls. She said then that Dr. B was going to call me back that afternoon, himself. So, I stayed close to home, with the phone on ready. No phone call. Well, like I said, I know he's a very busy man, so I waited until late Friday to call his nurse again, thinking maybe there had been a mixup on who was supposed to talk to me. She called me back just a few minutes later to say that Dr. B had just plain forgotten, and was very apologetic, and would definitely call me that evening. Still no phone call. I can't imagine him calling me on the weekend, but who knows.

I know I need to work on patience, as it is a virtue I really need more of. The old joke is that you should be careful when you pray for more patience, as the way to get patience is to deal with adversity. I guess my "adversity" right now is having to deal with these digestive related problems for over a year now, trying one thing after another, as the doctor ordered, with no relief yet. I'm definitely showing signs of depression, and I blame much of it on this unresolved problem.

There's no doubt in my mind that I am under medicated right now, as far as the Parkinson's meds are concerned. But there's no point in going back to the Neuro until I have overcome my difficulties with getting used to the CPAP, and until something definite has been accomplished with this digestive situation. As it is, I'm changing two things at once, which is not good science. In order to be sure what the cause and effect is on any treatment change, there needs to be only one variable at a time.

I wrote some time ago about how dealing with Parkinson's is like being in a clinical trial with one participant. I still think that is an accurate assessment of what it's like. After reading lots of comments and stories from other PWP, it is apparently true for most, if not all, Parkies. The doctors can only try things, never knowing exactly how any one patient is going to react to the meds, or their side effects.

And the depressing thing is, none of these meds work to improve the underlying brain deterioration. They only work on the symptoms. So far, no medicine has been proved to actually slow down or halt the progression of the PD itself, and there's not even a whisper yet of anything that can repair the damage already done, with the exception of claims made for stem cell therapy.

I do have one positive piece of information to report, though, and I try hard to end on a positive note. I mope about all this enough. Since brain fog is a problem I've had for a long time now, I was very curious when someone on the PatientsLikeMe site mentioned the idea of using brain training to improve their mental abilities. That started me doing some research, and led me to the MyBrainTrainer site. It was not very expensive to join for three months, and I figured I could give it a try for that long, and then decide if it were worth taking a year's subscription. They have a series of online brain exercises, set up like miniature games, that you work through on a planned schedule. I'm on Day 12 of the 21 day basic training part right now. My scores are consistently falling in the 25 to 29th percentile of all their participants in my age range. Not anything to brag about, that's for sure. BUT, here's the good part. The brain fog is beginning to lift, just a little. I'm not groping blankly for answers to questions on the Smarter that a Fifth Grader show nearly as often. I find I know the answers more often on Jeopardy, too, and I don't feel nearly as frustrated by watching these shows as I was a few months ago.

So is the BrainTrainer the reason, or the CPAP machine? I have no idea. Again, changing more than one thing at a time makes such a conclusion impossible. But I don't care, all I know is that I'm thinking better, even as my body is slowing down again from not having a strong enough PD med dosage in my system. I'm very grateful for that, and I cling to any positive outcomes as I try to work through this depressed stage I'm in.

Bits of This and That

I've been a good girl, and I've tried to use the C-Pap machine every night. I can only say try, because I'm still not using it all night long. I did manage to keep it on for 6 hours on Saturday night, and I thought I had it licked. Then last night I couldn't stand it past 1:30AM.

I'm pretty much used to the nose canula now, but the chin strap contraption is quite another matter. I'm going to call the tech again this morning for another appointment, since I only have another week before I'm stuck with whatever equipment I have after 30 days. I have Acne Rosacea, which normally is not a problem for me, as I quit wearing makeup, except for lipstick, many years ago. The reason I bring that up is that all these straps and bands is irritating my face. I'm starting to get red patches around my mouth where the chin strap is rubbing as I turn in the night. There are several other types of chin straps available, so I'm hoping she can find something else that I can use.

We're in the middle of a cold wave right now, with high temperatures in the 90's! So, DH got up this morning in the mood to go walking. We were out at the track at 5:15AM, and there were already people out there walking. It's really the only time of day that it's safe to be doing it right now. I did 3/4 mile, plus my knee and shoulder exercises, and the Tai Chi, while he did 2 miles. Not bad for the first time we've been there in several weeks. Of course, I've been walking around at home and working a little bit in the yard each morning, so I was not out of shape too badly. Maybe tomorrow I'll walk a mile, but I won't push it if I'm not ready. I learned that lesson really well.

The gas is still just as much a problem as it has been, and I'm supposed to call my Gastro this week to let him know how I'm doing. I'll wait a few more days, just in case DH's explanation is right. He thinks I need to give myself a few days for the colon to adjust after the GoLYTELY, and he's probably right.

I also noticed that the tremor in my hands is becoming more noticeable, and showing up more often. I've not had tremors up until recently. Balance wasn't so good yesterday, either. But I'm not in walking shoes on Sunday morning, and that could be it. I am wearing flats, with as much support as I could find, but I never feel as secure when I wear them. I'm not sure what I could wear that didn't look like athletic shoes, but I'm going to have to find something. Part of the problem right now is that I have more tissue swelling than I have been having. I've been on a diuretic for a long time, even before I was diagnosed with PD. But now, my fingers are so swollen that I can't completely close my fists. My ankles are badly swollen, too, and my weight is up, which I'm assuming is fluid.

So, I'm still dealing with lots of little problems, none of which, hopefully, are serious, but all are things that lesson my quality of life. I am thankful that I am in as good a shape as I am. Reading about all the problems that other PWP have makes me feel very blessed that I have a wonderful hubby to help me when I need it, and sympathize with me when I need that, too. I feel for those Parkies friends whose symptoms are so much more debilitating than mine are, and pray that they have a good day today.

Have You Ever Heard of Parkinson's PLUS??

One of my online Parkie buddies, Dan, has been diagnosed with Parkinson's Plus. There are also several PWP I keep up with on the Patients Like Me site who also have PD Plus. If you know someone with Parkinson's and the meds don't seem to be helping, they might find some ideas about what else could be going on at Dan's PD Plus Me blog. He has an extremely well written blog, with lots of great posts on many PD topics.

The post title will link you to the beginning of a series he plans on doing about each of the types of PD Plus. I'm looking forward to reading them all.

Trying a Different C-Pap Mask

I took the c-pap stuff back to the supplier yesterday, and they have changed me to a very soft nasal "plug" that doesn't have nearly as much strapping all over my face as the nasal mask did. I slept 6 straight hours, without getting up at all. I can't remember how long it's been since I did that. It's not perfect, as my nostrils were sore this morning, and I can still feel the thing, even hours after it has been out. I've always had this odd thing where I could "feel" a hat long after I had taken it off, and this canula is doing the same thing.

I have hope now that I will adjust. The frustration I was feeling with the other face mask was really wearing me out. It's a good thing I don't cuss! LOL

I'm calling the Gastroenterologist today, as I want the colonoscopy for my peace of mind. I'm still not satisfied with my elimination situation. We took our kittens to the vet this morning, and I got light headed and had to sit down quickly, because we were standing, waiting for the vet to come in our treatment room. I blame that on my tummy, as I felt better after I excused myself and used their facilities.

I've started going out in our yard and working just as soon as it's daylight, as it's just too hot later on in the morning. So, my exercise routine is back on track, with walking and Tai Chi every day, plus working for a little while in the yard. By the time I come in around 7:00AM I'm drenched in sweat.

I'm definitely going to have to get my Neurologist to prescribe something to stop this excessive crying I'm doing. I broke out in blubbering at the c-pap office, trying to tell the tech how frustrated I was trying to adjust to the mask. I have learned that this is called emotional lability, and it is a PD side effect. He doesn't want to change my meds until I get the cpap and elimination situations settled, and that makes sense.

So, some things seem to be getting better, and others aren't.

Get Help Paying for Prescriptions IF YOU DON'T HAVE INSURANCE!!

One of my new Parkie friends that I have met on the PatientsLikeMe site is knoxgal. She posted an extensive set of links for places to go to get help paying for Parkinson's meds, for those who do not have insurance. Some of these sites are for other than just PD meds, too. I asked permission to copy her post for any of you who either need this information yourself, or know someone who could make good use of it.

Bridge to Access:


Azilect:


GlaxoSmithKline


Needy Meds:


Partnership for Patience Assistance


Johnson & Johnson:

This is what knoxgal has to say:

Every site is different as to what meds they will cover. Most require the same thing and I am offering this info through trial and error. To get started you will need to contact them to get an application. Fill out the application and note the requirements needed. Number 1 -- prescription. Number two--verification of income. Number three-- a copy of W2 for the last year. Later, they have requested the last page of my filing with the IRS, showing your income and the amount of your refund etc.

Please note every site requires something different, such as your income, employment status etc. Once you have all of your forms filled out, and documents together, you need to get these to your doctor for him to sign them and he will get them into the provider for you.

I have found that they are really good about automatically sending you refills. You don't even have to request them. You usually qualify for free meds or discounted meds for a year. After a year is up, you do need to reapply.

I hope this is helpful.

I should think there would be a lot of folks who would find this information helpful, and I want to thank knoxgal for allowing me to copy her post.

PS Just to give you an idea of what a neat site PatientsLikeMe is, here's the public part of my information on the site, plus you can see what other patients have made public, as well. Right now, they are set up for patients with ALS and MS, as well.

Startle Reflex Does Me IN!!

Have you ever seen a small baby startle? Their whole body is involved, with arms and legs flailing wildly, looking like they can almost jump straight up off the table. Well, yesterday, I looked like that, and it was a very upsetting episode.

I've always been easily startled, so up until recently, I had not made the connection with my increased jumpiness and my PD. I've been attributing it to my insomnia. After reading about other PWP on the ParkinsonLikeMe site, I've come to realize that this phenomena is a fairly common PD symptom.

We were just finishing up eating at our favorite Mexican restaurant, when the people behind us must have been celebrating someone's birthday. Without any warning to me, because I had my back to them, the waiters had gathered at their booth and started singing loudly in Spanish. I jumped out of my skin. My heart was racing, and it was all I could do to hold the tears long enough to get out of there. Poor hubby was so angry that he all but threw the money for our meal at them, and he vowed we would never come in there again.

I was so upset, partly from still feeling the effects of such a powerful reaction, but also with myself, because I had reacted that way at all. I couldn't stop the tears, and remained very depressed the rest of the day. It completely spoiled our day out, and that's a shame. I can feel the tears welling up, even now as I write about it. Such a simple thing, but it really drove home just how much I have changed.

I read other's stories, like Dan's that I posted about today, and I'm ashamed of myself for being depressed over my little problems. But that only makes the depression worse. I can only pray for strength and make myself get up and do ... do something ... do anything... and not wallow.

PatientsLikeMe Site Is AWESOME

I've spent a lot of time today exploring all the neat pages on the PatientsLikeMe site. I received an invitation to join, and now, I'd like to extend that invitation to all of you. It does involve putting in a lot of medical information about yourself, but I've already done that here, so I decided that shouldn't stop me from joining. I'm so glad I did, as I've already read some posts on the forum that made me feel less strange and alone. I can see that the aggregation of data they are trying to achieve will be a fantastic tool for research and personal information.

So, here's the link:

http://www.patientslikeme.com/

and here's the personal profile I've been working on today.

http://www.patientslikeme.com/members/view/Dirty+Butter

They have it fixed so you can find all members who have the same symptoms, use the same meds, etc. as you.

Blue Funk Is Now Fading

I don't seem to be quite as depressed as I was a few days ago, thank goodness. The money part of the estate is finally taken care of, so the only thing left to do is sell Daddy's car and finish emptying the house of all the furniture and stuff that our DD's don't want. I say "only" like that's not a big deal, but there's a bunch of stuff to get out of our older DD's way. We did bring Daddy's car down to our house yesterday, so at least they can move things out to the garage now that are in their way. We didn't want to do that while all the construction delivery trucks and workers' vehicles were going in and out of our yard.

We put Thompson's Water Seal on the garage floor day before yesterday, and it soaked it up like a sponge. We have to wait until tomorrow for it to be cured, but from the looks of it, we'll have to put another coat on it before we put anything in the garage. Not that we can use it yet, anyway, as only half of it has been roofed. We're waiting for the other special order to come, since the builder didn't order enough of the starter strips for this particular type of shingle. It seems this pattern takes two rows, instead of the standard one, so we have half a roof at the moment. LOL

So many delays have happened with this garage that what would have had me in tears a week ago is now just funny. They don't get paid until we're satisfied, so it's to their advantage to not make all these time consuming mistakes. Go figure.

We bought a pair of trekking poles the other day, as an experiment. The one piece ones are supposed to be better, according to all I could find on the Internet. But it made more sense to try out a cheaper set of adjustable ones that both of us could use at different times, until we see if we like it. Using the walking poles is supposed to be a way to protect the knee, ankle, and hip joints, plus give the upper body a complete workout while you walk. And they are recommended as an excellent exercise tool for PWP.

We're practicing around the house right now. I'm not sure I am going to be able to use the best possible form with them, as it's kind of confusing. It involves holding them with a strap around your wrist and then letting go of the grip when the pole goes back, as you grip the other pole as you walk. Trying to keep my feet coordinated with the poles, plus remembering what my hands are doing, all at the same time, is very confusing. But I can definitely hold onto both poles all the time and do them OK. I can already tell that they are going to increase the exercise my upper arms and shoulders get. I've been walking with one pound weights every other lap now, for some time, in anticipation of trying these poles. I hope that means I'm ready for them, but I'm in no hurry to try to walk very far with them right now. I've learned that slow and easy works better for me.

We managed to salvage enough leftover sheathing and scrap 2x4's to have a good start on finishing off one inside wall of the garage, plus make some shelving, plus there is a good bit of the siding left over that they were going to take to the dump. We kept that, too, in case we ever have storm damage. I've been walking around outside the last few days with one of those magnets on a pole, picking up nails. No telling how long it will take for us to find all of them. With the drought we're having, it's not as if we need to be worrying about using the lawn mower in that part of the yard for awhile, so we should have it cleaned up before we need to be concerned with cutting the grass safely. As for cars, we're still not using the new part of the driveway or going near the garage. Tearing up a tire is just not worth it.

We're making slow headway with our eBay sales, with over 250 items listed now, so I'm hopeful that I can get back to enjoying reading everybody's blogs soon. I did manage to skim through Ruth's blog to see how things were going with her since Mick passed away, and I'm sorry to see that she's had one problem after another, due to the red tape of their national health care system. The more I read what Marion and Ruth have to say about socialized medicine, the surer I become that I pray we never get it in the USA!!

Since I'm writing this at 2 AM I think it's safe to say the insomnia is still going strong. I went to bed about 9:30PM, but I was wide awake by 12:30. I tried going back to sleep about 3:00, but didn't succeed, so I've been up since 3:30 with 3 hours sleep for the night. Counting the days until I see that sleep specialist!!

Getting a Sleep Study Done

I went to see my Neurologist yesterday, and he is very pleased with my physical progress. He doesn't want to change any of my meds, though, until I have had a sleep study. So, I have an appointment in July with a Sleep Disorder specialist. I'm not sure what that kind of doctor is called, but they gave me a book's worth of forms to fill out about myself that I have to have done for the appointment. I'm surprised they didn't ask me if I painted my toenails!!

I've been doing a little research about this insomnia thing and Parkinson's, and it's no wonder that this is bothering me. Something like 88% of PWP complain of insomnia!! Whether it's the disease or the meds we take, I'm not sure, but that's a significant symptom to deal with.

I have recently bought two more books that I think are going to be very helpful. One is Parkinson's - The Art of Moving, by John Argue, and the other is The Book of Exercise and Yoga for Those with Parkinson's Disease, by Lori Newell, M.A., which shows how to do each exercise from a chair if the PWP requires it. Add the Chi Walking book I've mentioned before, by Danny and Catherine Dryer, to that list, and I think any Parkie would find help with improving their body mechanics. I found used copies of the first two on Amazon recently, and I bought the walking book at a local book store. Thanks to Tami for suggesting the Art of Moving book.

DH mentioned last night that the slope of our newly installed home "track" makes it harder for him to get in as many steps as he does on the track at the local park. And I thought it was just me.

We now have extended our driveway around to the side of our house, with a new garage to be built next week, hopefully. But we didn't stop there. We had them put in a side walk to underneath our deck, and had a patio put in there. There's only about a five foot pathway between the end of the patio and the beginning of the sidewalk that goes from the deck steps to the front driveway that we need to finish with stepping stones.

That means we essentially have our own personal track now. We get an up and down slope going to and from the back yard, as we have a full daylight basement, with plenty of level walking up front and on the new driveway. Now I can step outside during the day and go around a time or two any time I get stiff or need a break from working on the computer. I'm not supposed to sit still more than about 15 minutes at a time, according to the Art of Moving book, so this is great. I think that's also why sitting through church bothers me so much. I can't wiggle enough in the pew to stay comfortable LOL!!

DH is walking between two and three miles each day we go to the track, but he's not able to do much else in the way of exercising. He had colon cancer several years ago, and the whole incision, from way above the navel all the way down, herniated last year. He has this huge piece of mesh sewn into his abdomen to hold it all together. You can actually see the bulge in his tummy where the muscles are just not able to support his mid section. The doctor cautioned him not to do crunches or anything similar, so it's hard for him to slim his middle down. He's pretty much stopped wearing trousers with belts, as they are just not comfortable.

So, I'm glad that my Parkinson's is giving him the motivation to walk consistently. He's a night owl, and if it weren't for getting up to keep me walking, I don't think he would get up early on his own. And, of course, it's way too hot to walk much around here unless you go very early. We are usually at the track by 6:00AM, with plenty of other walkers already going around when we get there. On days he doesn't feel like getting up that early, he's been walking around our own track as late as 10:00 at night!! So, we're helping each other to stay motivated, and that's a good thing.

Starting Requip Again - Stopped Physical Therapy

Yesterday was my last time for Physical Therapy on my knee for now. I called my insurance company, and they only allow 15 PT visits a year, unless THEY approve the extra ones, and I've used 7 of them already. So, I figured I'd better leave myself with some, in case I have other problems before the end of the year.

I asked her about using the mini trampoline we have, and also a little stepper and an exercise ball. Her concerns had to do with balance, but other than that, she thought they would be fine. She said the stepper was a particularly good one for a PWP, because of the repetitive alternating motion. Of course she cautioned me to go slow about adding minutes to it, and to rest every other day or every two days. She's very emphatic about reminding me that the Parkinson's means I have to rest my muscles more than other people would need to. But she emphasized that I need to be on a regular exercise program the rest of my life.

I did start on the Requip again yesterday. Even though I've been doing all this exercise and my legs are definitely stronger, I'm still walking very slowly. It's called Bradykinesia, and it's always been my main Parkinson's symptom. Requip has some pretty uncomfortable side effects, as most of the PD meds do, it seems, so I really tried to do without it. But I just don't think the Zelepar is enough on its own. Dr. S. told me to use my own judgment on starting it back, so I've decided it's time.

I did get nauseated before lunch yesterday and I had a headache last night. Plus, this morning, I got light headed while I was taking pictures for our eBay listings. I stood still too long, I guess. Anyway, I had to stop and sit down, as I broke out in a cold sweat and could feel myself getting woozy. The worst side effect for Requip, though, is compulsive behavior - if that starts up again I won't be able to use it, for sure.

The PT worked me pretty hard yesterday, knowing it was my last visit, and I was very uncomfortable last night. I ended up taking 2 Lortab to stop the pain in my legs. At least that meant I got a good night's sleep! They don't seem to be as sore today, so that's good.

I'm having the MRI today at a different place, called a Stand Up MRI. That will be a new experience. It makes me wonder if that was chosen to get a different view of my knee, as there is a regular tunnel MRI place in the same building with my doctor.

I just realized that I forgot to call the Orthopedist's office yesterday to make the follow up appointment. I'm really having a hard time remembering to do everything that needs to be done nowadays. Hubby tries to help me keep it all straight, and I make lists like crazy. I've even started using the task reminders on my Outlook program to try to help. Of course I have to remember to put the reminders in the program LOL!

I got an email from the other PT patient who has Neuropathy last night, and of all things, we live in the same town!!! I'll be doing some research on her particular type of Neuropathy and adding links to it, if I can find anything specific for her. I wonder if she lives anywhere near the EPA toxic site, the way we do????? She's in far worse shape than I am, and the doctors don't know what's causing her problems, either. And she's young. I've added her to my prayers, and I hope she and I can continue to correspond.

It was a day of changes yesterday, but hopefully they will be good changes. Only time will tell.

Wonderful Cortisone

I went to the Orthopedist yesterday and talked to him about my knee and shoulder. I'm satisfied that the shoulder is responding well to the Physical Therapy, and I can tell that the leg, hip, and thigh muscles have strengthened since I've been going to PT, but my knee still will not straighten all the way out, and getting up and down from a chair still is extremely painful. So, he's put in a request with my insurance for the MRI, so we'll both know what's going on in there.

He did ask me if I wanted a Cortisone shot, and said it might give me relief for anywhere from a few days to a few months. The shot hurt something horrible going in, and the knee was awfully sore yesterday, but it's not hurting now! It's been so long since I could sit down without inwardly, or sometimes outwardly, groaning, that this is quite a pleasant change. I pray that I will be one of the ones to get long term relief with the shot. I've always had good success with epidurals lasting a long time, so I'm optimistic.

I did ask about going back for more PT, and his PA told me I needed to check with my insurance to see how many times they will authorize. She said I might want to keep some therapy sessions available, just in case I do end up having surgery. It's a shame that insurance companies control decisions like this, not the doctors and therapists who know how much I need this. I have good insurance though, so I'll be talking to them Monday to find out where I stand.

I had already decided before I got hurt taking care of Daddy that I would join a fitness "club" run by St. Vincent's hospital in Birmingham after he died, but the knee put that on hold. They have a program where you pay for a complete evaluation of your physical condition and they supervise your exercise program, with quarterly checkups of your progress with a Physical Therapist. They have all kinds of equipment, a pool, and lots of different classes I can take. I've been chatting back and forth with Lynda of Pilates & Reiki in Paradise about possible nearby instructors suitable for a person with Parkinson's, and oddly enough, this is the very Pilates class she suggested. Small world.

So, for the time being at least, I'm pain free, with plans for keeping it that way. We're going on our usual Date Day today, and by the time I've been in and out of the car dozens of times today, I'll know if I'm going to be one of the lucky one for whom Cortisone is a wonder drug. Wish me luck!!

Tremors Galore!!

Don't let anyone give you the impression that everyone who has Parkinson's reacts the same way to the loss of dopamine in the brain. I'm one of those whose main symptom is Bradykinesia, which means without medicine I can barely get my legs to move at all. My upper body movements are slower and less coordinated, but my lower body simply has no clue what my brain is telling it to do. This effects my walking, balance, and my digestive system muscles. Something as simple as standing through the verses of a song in church can be very difficult for me to do. I'm also having lots of problems sleeping, no matter how tired I am.

Unlike the stereotypical image of a PWP, I have not had tremors. Well, I can't say that any more. Yesterday evening I noticed a rhythmic series of what felt like shivers to me, but I wasn't cold. I thought it was nerves, as things have been quite stressful around here lately. But when I tried to go to sleep last night, those shivers turned into full blown tremors. Not only my legs, but for awhile there, my whole body was uncontrollably shaking. These are called resting tremors, as they immediately stopped when I raised both legs. As soon as I put my legs back down - they would start up again. Yep, that's Parkinson's tremors, alright. Something else to talk to the Neurologist about next week.

I have decided not to add the Requip to the Zelepar, since the doctor's appointment is so close, but if I do the shake, rattle, roll thing again tonight, I may change my mind. Just as a point of information that I find extremely odd, PWP don't have tremors in their sleep!! Weird, isn't it??

Testing ... Testing ... This Is Only a Test

I thought I'd o a post without any back spacing or spellchcking, just to give you folks an idea of what my typing is like these days. This will also give me a benchmark as to the extent of my mind/finder coordiatniton at this time. so bear with me while you try to read my gobbledytook. LOL

Daddy an di both ahd a good night's sleep slast night!! so I'm much more rested to day that usual. We;re beginning to settle into something of a routine finally, alsthough we're still experimenting with ways to make the lift help us the most effiiently.

I did have to call the night service night efore last, because he was choking on his own spit in the bed about several hours after he went ot sleep. I tried moving the head of the bed up and down and turning him from side to dide, but nothing seemed to help. I think the nurse thought i was describing a death rattle when I first talke to her, but I assured her that I knew that sounded like. She said to wake hime up and see if that would help with stronger coughting. I let the bed flat, turned him onto this side, slapped him on the back the way cystic phibrosis patients done, and this huge glob of thick mucus finally came up. Surprisingly, he went right bakc to sleep, and slept well the rest of the night. I didn't thogh, as I was afraid it would happen again.

I seem to be going from one problem to another, as far as I'm concerned. Now it's my back hurting again. It's not the vertebrae, but the muschles of my upper back. That's from leaning across Daddy, even though we have the hospital bed. This is definitely from the Parkinson's, so I guess it's time to add the Requip to my meds again.

I can tell immediately when I make the se spelling mistakes and typing mistakes. At least I know it's wrong, but I take spellls of not being able to cooridante everything einvolved in acutally typing, And I really wa sa good typist, so it's not because I don't know how LOL!!

Well, of you've srubbled thorugh this you have some idea of the whats' involved in turning out a post the way they usually lool. It's the same with comments.

Did I say that Parkisons' is a terible disease? And I'm ant Stage One!!!!

Gee - I'm Now a "Hero in Parkinson's Disease"

One of the blogs I have found useful to read from time to time is My Parkinson's Info. It is an informational site, but they also ask PWP to answer interview questions. Matt was kind enough to ask me to tell about what it was like being a caregiver with Parkinson's Disease.

So I now have an Interview on My Parkinson's Info!

A Clinical Trial of One??

In a real Clinical Trial, doctors use a very large number of people, usually, but not always, divided into two groups. One group gets the medicine being tested, and the other group gets fake medicine, called a placebo. At the end of the trial, if the people getting the real medicine have improved considerably more than the group getting the placebo, the medicine is assumed to be the cause of the improvement. That's a good thing!

They use such large numbers of people to conduct these trials, because there are always going to be unforeseen situations that influence the effectiveness of the medicine for some people. Maybe a few of the subjects have an undiagnosed disease that makes even the best of medicines not work. Or maybe some of them are under a lot of stress that ruins their results.

When you see a new medicine being talked about with glowing praise of its effectiveness, you have to be very cautious about getting all excited about it. I have seen reports like that where the trial only had 16 people in it. That only gives doctors a hint that a certain medicine might be helpful. It's just not enough people to tell you much.

That's the problem with trying to find the right medicine for me, or any other PWP. We are, in a very real sense, our own Clinical Trial. The last time I was on Requip, I was terribly bloated, with horrible stomach cramps and gas. So, the Neurologist took me off of it, and he put me on Zelepar. That medicine dissolved under the tongue, so it doesn't bother the digestive system. My stomach improved tremendously. The question is, was that because of the Zelepar, or was it because, that same week, my Gastroenterologist changed the prescriptions I was taking for my stomach? Also, my symptoms were not alleviated as well when I was on the Zelepar --- BUT I had strep throat most of the time I was trying it, without knowing I was that sick.

There's no way to be sure, is there, with more than one medicine being changed at the same time, and with me being sick, too? I talked with my Neurologist yesterday about this, and the fact that I had gone back to 1 Requip pill a day for several days, because I ran out of the Zelepar samples before my appointment. Even though I had been on the Requip for several days, my stomach was doing just fine.

So, Dr. S. has prescribed another month of Zelepar, to give it a fair trial at helping my PD symptoms. If I am still not getting as good a results with it as I was the Requip, I am to add the old dosage of 3 times a day of Requip to the Zelepar, which I take 2 times a day. I don't see Dr. S. for 6 more weeks, to try to give me a chance to tell what is going to work best for me.

Parkinson's Disease is different from many diseases, where there is some MRI or blood test that will tell the doctor what is helping, and what is not. With PD, it really is up to me. I have to be the judge for myself if the Neurologist has prescribed the right medicine and the right dosage. Then he bases my prescriptions on his vast experience with many other PWP he has treated.

But it still boils down to a Clinical Trial of one - ME!

Amniotic Fluid - Source of Stem Cells?!?

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!!

I've Lost Christmas!

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.

Ahhh To Sleep, Perchance to Dream

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 or