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?

Looking for a Parkie Who Reads/Writes in Vietnamese

The Patients Like Me site I belong to has a new member, with very limited English, who wants to correspond with any PWP who can correspond in Vietnamese. He might also be able to talk to a Parkie who is fluent in French, but I'm not sure about that. Nope! He wrote me, and he does not speak French. Well, I was hoping.

When I Googled on the Internet, trying to find a Parkie who spoke Vietnamese, I found lots of articles about all the Vietnam veterans who were exposed to Agent Orange. It seems that there is a high incidence of Parkinson's among that group. With all the other terrible problems these soldiers have faced over the years from Agent Orange, this is just one more tragedy they have had to endure. My heart goes out to them, and to their families.

I would suspect that there is a high incidence of PD among the native Vietnamese population, as well. The Parkie I am trying to help find someone to correspond with is 51.

Please pass this request along, so we can help this fellow Parkie find an understanding friend.

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.

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.

A PD Plus Story You Should Read!

I want to thank Dan, of PdPlusMe, for writing a detailed post on his early symptoms and struggles with what was eventually diagnosed as PD Plus. If you, or anyone you know, has Parkinson symptoms which are not helped with Sinemet or other traditional PD meds, please get them to read his blog!!

pd plus me: Looking for those with Parkinson's Plus and PD

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.

Earliest UNDIAGNOSED Symptoms of Parkinson's Disease????

Hi Rosemary

First I want to thank you for taking the time to blog. You may not be aware of important I find it to hear others Parkinson's and day to day life experiences. I appreciate it very much.

I am writing to you because my interest in PD came because I began having symptoms which I suspected might be PD. Fortunately my symptoms are very irregular and inconsistent and not at all affecting my ability to function. The Neurologist I am seeing is not good and is pretty much dismissing my symptoms as nothing. This is fine with me or maybe wishful thinking. I will have resting tremors in my left thumb on occassion as well as jerking limbs, and muscle trembles throughout my body, weakness, etc. Again there are very inconsistent and really could be normal daily problems or another issue. I am very much into Holistic and Natural health so have been doing many things to minimize or slow and potential problem I have. I am 45

I started looking for blogs to see what people reported as initial symptoms long before they were diagnosed with PD. I suspect my symptoms maybe be things people have looked back after they were diagnosed and say yeah, now I remember I had problems long before I realized there were problems. I cannot find such a blog and I am really curious as to when you reflect on your past, when did small signs begin to show up and just ignored or dismissed them. Or whether you had inconsistent symptoms at first. I could be completely wrong, I have no idea!

So after that long winded explanation I have a request. If you have the energy and time at some point, I would like to see a blog from you of your very early years working up to PD. No pressure and no hurry. It would be very much appreciated.

Keep up the blogs and my prayers are always with you

Ted C

Ted wants me to try to look back and pinpoint some of the earliest signs that may have been Parkinson's symptoms that the doctors missed. I've mentioned several things in other posts about what I now believe were warning signs that were not detected. I'm not criticizing the doctors about this, as hindsight is always better than foresight. There's absolutely no way of knowing if I'm correct on any of the possible signs or not, but I'll try to list as many things as I can remember that were puzzling at the time and went undiagnosed or ignored.

I really do have back problems that are unrelated to Parkinson's, as I have Degenerative Disk Disease. There have been many trips to different doctors over the years with back pain and weakness in my legs. There were times as long ago as 15 to 20 years ago when I was walking slower than my parents, who were in their 80's at the time. Doctors were able to alleviate the pain with epidurals, but the walking problem always gradually disappeared on its own and then returned just as mysteriously.

I've had spells of mental fog for many years, which I always blamed on female hormone problems, as I was very young when I had a complete hysterectomy, or on the stress of teaching and later as a caregiver. I was on hormone replacement therapy all that time, though.

I had a diagnosis of Functional Dysphonia while I was still teaching, which means that I could not talk at all, but it was supposed to be psychosomatic. The doctor attributed it to stress. I had bouts of severe laryngitis over a period of many years. I had always been in the choir at church, but about 15 years ago I reached a point where I could not sing through a verse without feeling like I was being strangled, with someone squeezing tightly around my neck. My breath volume was greatly diminished, too.

I went through several years of Migraine Headaches. The Neurologist I was seeing at that time found that I had a positive Babinsky reaction, which means my toes didn't do what they should have when he scraped along the bottom of my bare foot. He concluded that I had probably had one or more concussions from childhood falls. He did not cure the headaches, but the episodes finally slacked off on their own.

I had a very scary episode about 15 years ago in which my left arm went totally to sleep one night while I was watching TV. It took a lot of massaging and soaking in hot water to finally get feeling back in it. When I went to the doctor about it, she diagnosed me as having Mitral Valve Prolapse. Some years later, I had an echo cardiogram, and there was no indication of MVP. I still have to be careful that I don't keep my hand too still when we drive for any distance, as it will still go to sleep. The same thing happens in the dentist's chair. These symptoms are probably from a spur on a cervical vertebra, but who knows??

One symptom that I had never gone to a doctor with was the way I would think I was smiling when my picture was taken, only to see that my face was blank when I saw the photo later. That is a definite Parkinson's trait, and it's been something that I was aware of for many years.

There may be other symptoms that I'll think of later, but I've read this post to my DH, and he's in agreement that these are an accurate list of some of the puzzling things that have happened to me over the years. I hope other Parkies will contribute to this post, too, so it will be as informative as possible.

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.

Standing MRI & A New Friend

I had the standing MRI yesterday, and that was quite a bit different from the lying down kind. First of all, it would be much better for anyone who is claustrophobic, as I was not closed in, and they actually had a big screen TV set up so I could watch it.

As far as my procedure was concerned, it was not very comfortable. The whole point was to take the MRI while I was putting weight on the knee, so I had to stand at about a 60 or 70 degree angle, I would guess, and be very still for about 30 minutes. By the time it was over my knee was really complaining, but it was worth every moment of it, if it gets them a better idea of what's going on in there. I still don't expect it to be torn cartilage, but soon I will know. Their brochure showed pictures of regular MRI views vs their stand up kind, with obvious disk problems that didn't show up when the patient was lying down. I may ask for that kind the next time I have to have one on my neck or back, for just that reason. I'll see the Orthopedist next week to get the report on it.

I've added the beginnings of a section on Radial Neuropathy to my side bar, not because I have that, but because I've recently started emailing back and forth to a new friend who has it. She and I live in the same small town, I taught her husband, know her MIL, and we're even members of the same church. And neither one of us knew each other LOL!! It was the Physical Therapist we've been going to, who gave her my blog URL, that got us together. She promises that she'll be posting here, so hopefully she can make contact with others who have problems more similar to hers. My Neuropathy is most noticeable in my legs, although my hands and arms are involved, too. Hers is severe, but I'll leave it to her to explain it.

I noticed the nausea from the Requip about 11:00AM again yesterday, but a few crackers stopped it. I'm still getting sleepy at the wrong time, as I nodded off early last night watching TV, and I've been up since 4:00AM. Actually, I woke up a little after 3:00, but I made myself stay put, thinking I would go back to sleep. No such luck.

I can't tell any difference in my gait yet, but it may take a week or so before I would notice anything, anyway. I don't remember reading anything about how long it takes Requip to take effect, so I'll have to try to do some research on that.

Oh, remember when I was having so much trouble typing? That has definitely improved. It must have been the stress of dealing with Daddy that was making that worse. Parkinson's folks don't handle stress as well as others do. I still make more mistakes than I'd like, but nothing like it was for awhile there.

I've done my morning exercises, but we're still not walking at the track. Hubby's poison ivy is getting worse, not better, and he's so stubborn I can't get him to go to the doctor about it. So he's just slathering on the anti-itch medicines I already had in the house, and he's trying to stay cool.

Speaking of cool, my temperature regulator is all off whack. I'll have hot flashes one minute and be freezing the next. I'm putting my jacket on and pulling it off constantly!! This is a Parkies thing, too, so there's not much else I can do about it.

I'll spend the day today writing descriptions and finishing the pictures I took this morning, so I can put some new items on eBay tonight. DH has gone grocery shopping, a regular Wednesday morning routine of his, and a chance for him to stop and chat with his buddies. I guess that pretty well catches me up for the day. I hope you are having a good day, too.

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!!!!

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!!

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 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!

Developing Our Plan of Attack

In order to understand my approach to having a chronic illness, you need to know a little about me and my side of the family. My grandmother had and my Daddy has Macular Degeneration. My Daddy has been legally blind now for over 30 years, gradually losing more and more of his sight, but never doing anything to prepare himself for being blind.

I've said for years that if I were ever diagnosed with the beginnings of MD, I'd immediately start learning Braille and take classes on how to take care of myself from a low vision standpoint.

My approach to any illness is to search the Internet for every bit of information I can find. I have a Chemistry major, with a strong background in Biology and Biochemistry, so the technical papers usually make at least some sense to me.

With that said, it shouldn't be so surprising that I've spent almost all this week researching everything I can find about Parkinson's Disease. I've found bits and pieces of information on various sites that I've bookmarked for myself, but the links that have the most information, presented clearly, I'll be listing in the right hand column.

DH and I are working together, bouncing ideas around as we try to understand how to balance the medicine with the foods that interfere with the medicine, but are necessary for good health. I did my first set of the PD exercises today, and DH bought a different cereal for me, based on the nutrition information I found.

By the time I see the Neurologist again, I should have a good idea what I need to ask him about. Of course I'm still assuming the DX is going to be PD, but at least I feel like I'm doing something besides waiting for the next appointment.