Tag Archives: depression

Decided to Go Slowly with Triavil

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I intentionally waited 24 hours after stopping the Bentyl before starting the Triavil, just as a precaution. As far as I could find the Bentyl has a short half life, so that should have been enough to get it out of my system.

The problem is …. I always try to do as much research as possible with any new medicine I take, and the more I read about the possible side effects of Triavil, otherwise known as Elavil, the less I liked it. By last night I was very upset about it and almost decided to call my Gastro today and tell him I didn’t want to take it.

But I did find that it was used off label for Irritable Bowel Syndrome, and also for Insomnia. He would be prescribing it to me for IBS. I did not like the fact that it is an antidepressant. In fact I got pretty depressed last night just thinking about going on it. I found one place that said that the dose is much lower when used for IBS than for depression, and that did make me feel better.

The PDR said it would possibly make me sleepy, dizzy, or groggy, along with a bunch of other possibles that I don’t even want to write down. So … after much research and a lot of miserable hours I decided to take the night dose right before bed and see how I felt today.

Well, it did make me groggy this morning – that odd medicated feeling that’s not quite woozy, but not quite right, either. That lasted until close to noon, so I will just stay on the night dose for several days and see how I do. Eventually I am supposed to take it 3 times a day. But I’m in no hurry. Tardive Dyskinesia is in the list of possible side effects, and that doesn’t sound good at all!!! So for now it will be no more than 10 mg for me.

As for my digestion? I’m still hurting, and I felt lousy today, but we did go out on our Date Day. We came home early, but I would rather have done that than not go out at all.

Only time will tell how this plays out.

Tryng a Different Antibiotic for a Week

Day by Day with a Movement Disorder Posted on by 2

I went back to my Gastroenterologist yesterday, thanks to being worked in. He wants to try me on a new antibiotic that I had never heard of, called Alinia, that targets organisms in the upper intestinal tract. He says if this works I should feel better within a week.

He was relieved when I told him that the horrible throat tickle seemed to be improving. I explained about the old diagnosis of Functional Dysphonia I had been given a long time ago, while I was still teaching. Basically the ENT said that stress was causing me to tighten up my vocal chords to the point that it was difficult to speak at all. He gave me some relaxation techniques and speech tips to help at that time, put me on a muscle relaxant, and sent me on my way for 2 weeks of voice rest. He left me feeling like it was my fault, and I was ashamed and embarrassed to tell anyone about it.

I can look back now and realize that it was the Myoclonus showing up, because of excessive voice use and stress. I no longer view that episode as having been “all in my head” and have stopped blaming myself for it.

Anyway, when the Gastro assured me that the Endoscopy showed no sign of inflammation in the esophagus, I had to start thinking of what else it could be. And that’s when I remembered the yawning and starting words with a breathy sound that the ENT had taught me. I talked way down low in a May West kind of voice for a few days, and it did get better. I have only had that gagging tickle a few times since then.

When you have ALS in your family history any kind of apparent muscle weakening is of concern, so he is as relieved as we are that this symptom seems to be improving.

I will start on the Alinia today, since our little pharmacy had to order it, and we will see how it goes.

We passed our 100,000th visitor to our Lost Toys Search Service blog yesterday, so I’m celebrating that milestone. At the rate we are going it won’t take anywhere near three years to get the next 100,000 visits. The popularity of the site continues to grow exponentially, with each happy family spreading the word. So that keeps me busy in a positive way. I credit it with helping me to overcome the depression that often sets in when I feel so yucky.

So … yucky tummy … but staying busy and trying to stay positive!

Today is My Last Day on the High Powered Ulcer Antibiotics

Day by Day with a Movement Disorder Posted on by 2

I have been counting the days until this Prevpac was finished, because the strong antibiotics have sapped my energy something terrible. My tummy is still tender and I get very uncomfortable after anything, even water, is swallowed. So I don’t think the ulceration in my lower stomach is healed yet. I have felt a little better since I started eating a little something with each medicine dose, and I spread my meds back out over the day the way they used to be. I’m hoping that will keep my stomach from getting irritated and inflamed so badly again.

I am blaming this on the stress that the Clonazepam put me under, plus I have a long standing problem with GERD and have had ulcers before. I have not felt like exercising for a long time now, and I know that I need to, whether I feel like it or not. But the thought of moving is just so overwhelming. There are days when everything seems like such an effort. It’s hard to explain, but sometimes the thought of even getting up to go get a drink of water seems to be too much.

I’m not really depressed, the way I was with the Clonazepam, but just totally wiped out physically, which leaves me low on brain power, too.

So I am celebrating that this is my last day of this stuff and hoping that I see some improvement in my digestion this next week. If I don’t I’ll have to call the Gastro’s nurse, and I suspect he will put me back on another two weeks of this stuff. That’s what happened the last time I had an ulcer.

As for the jerking and tics, I am doing just fine. I have them more as the day goes on, but nothing at all like they used to be. I still startle in an odd way over the least little thing. My body seems to paralyze for a moment, my eyelids flutter, and everything goes blank for a second or two. Then I come out of it and usually realize that whatever startled me was trivial.

I have been able to use the relaxation techniques I learned a long time ago when I was being treated for Functional Dysphonia. I am using the low register of my voice, instead of allowing it to be the high pitched “female” voice. I have sung alto since elementary school, so that is a good indication that my speaking voice should probably be lower than what I normally use. Making a conscious effort to breath at the beginning of make a sound and letting it come from down deep has taken a lot of the strain off of my vocal chords, so I am not choking and gagging with a horrible tickle all the time any more. This was obviously stress induced, and that means I can control it to a great extent.

So once again I choose to look for the positive improvements I have made and hope and pray for continued good progress.

Primidone is HELPING!!

Day by Day with a Movement Disorder Posted on by 2

I’ve been trying to get to this post for several days now, and other things just kept getting in the way. Also, it looks like I have good news, and I didn’t want to celebrate too soon. The Primidone seems to be helping!!

I finally got in touch with Dr. Watts’ UAB Neurology team, and he sent in a prescription for Primidone on Friday a week ago. I took my first dose Friday night, and was pretty well looped all day Saturday, and almost as drugged feeling all day Sunday. But I was NOT jerking, and my hand was still! My walking was very odd, like I was on a boat or a dock. When I stood still I kind of wobbled, instead of shaking, as if it were slowing the speed of the movements down and increasing the amplitude, if that makes any sense. That lasted for several days, but then by about Wednesday I was only noticing the good effects. As long as the dose was in me, I did not shake, wobble, or tremor at all. Ignoring the slow walking, I was back to NORMAL! Even my handwriting improved. I was not depressed, but trying not to celebrate too soon, because the next step was to add a morning dose, and I wasn’t sure what was going to happen then.

I started taking a second dose in the morning as well on Monday. I do get a little woozy feeling for just a little while about an hour or two after I take it, but other than that, it seems to be helping a lot. I have a slight mouth twitch today, the third day I have had two doses, which I did not have Monday or Tuesday. But that is the only symptom other than the slow walking that I have! I do have to be more careful with steps – it’s like I can’t tell where my feet are.

I am not depressed at all with the Primidone, the way I was with the Clonazepam, and I am very hopeful that this medicine will work for me. I am still doing research on this medicine, but its brand name is Mysoline, and its primary use is in controlling seizures. They assured me that there were no signs of seizures from my tests, so this is what they call an off label use of the drug.

This medicine has a very long half life, and that means there is still plenty of the drug in my system when it is time to take the next dose. Actually, when I was taking just the one pill, I took it at 7:00PM and it did not completely wear off until four or five o’clock the next afternoon. I am also on the lowest dose, so there is room to go if I get used to the medicine and need to up the dosage.

Did you see me doing the happy dance????

I am so thankful to God for his tender mercies!!!!!!!!!!

On Days and Off Days

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I am definitely less depressed since gradually cutting the dose and frequency of the Clonazepam, but I still have on days and off days. Thursday I went until sometime after 5:00PM without any facial tics at all, and then spent the whole evening jerking like crazy. When I’m like that, my face contorts, my left shoulder jerks forward, and my foot dances a jig uncontrollably. I was on a half pill only at night then. Friday I jerked and twitched all day long, also on the half pill dose. I also had a huge startle reflex while we were out on our Date Day, something I haven’t done to that extent in some time. Now today, Saturday, my mouth is all quiet and well behaved so far. I did not take even the half pill of the Clonazepam last night.

I had called twice to UAB, trying to get them to go on and send in the prescription for an alternative to the Clonazepam, because our drugstore would be closed from Friday evening until Tuesday. They did not get it called in, nor did I get a callback from a member of Dr. Watt’s team. The receptionist did tell me on my second call that Dr. D was sick. He is the member of the team who apparently is the one I will be seeing the most. So, I have to assume that is why nothing was taken care of.

I have found that I can at least mask what my mouth is doing in public by chewing sugar free gum. I’ve always been a gum smacker, so I am trying to get out of that habit, and reach a point were I can slowly chew and control the horrible twisting, twitching, and jerks my mouth does so much.

The right foot continues to do its own little dance, which makes me feel unstable as I stand still or walk. Going up and down steps is harder when there is no way of knowing what my foot is going to do at the moment. So I am still using the cane everywhere except here in the house and at church. The few steps I have to deal with at church are entrances, and hubby is there with me going in and out, so I can skip the cane and feel a little more inconspicuous.

I should have taken the last dose of the Clonazepam last night, but I thought it would be wiser to see how I would be today, rather than being even more unpredictable than usual for church tomorrow morning. Since I’ve been OK today, it looks like the decreasing dosing was done slowly enough to not leave any withdrawal symptoms. But there is now way of knowing how I will be in the next minute, let alone tomorrow for church.

I continue to stay busy searching and posting on our Lost Toy blog, and have been able to help quite a few families, thanks to all the folks who read the requests for help and search for them, too. If you have never been to that blog, you ought to go read some of the stories and try to help them. It’s a very satisfying feeling to help them. And I continue to add to our online Plush Toy catalog, too, so I stay very busy.

Oh, and I mustn’t forget to mention that it looks like our Centipede grass is actually beginning to come up in the composted side yard. I worked for a little while this morning in between the shrubs and the driveway, digging that section up and trying to get as many of the weeds out of that section as I can. We can plant Centipede here until July, so I should have it ready long before then.

Take each moment as it comes, Rosemary – a lesson I am being taught daily.

Weaning Off Clonazepam = Thinking More Positively

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I’m down to a half tablet at night now, starting today. I will stay on that for three days, and then I will be through with it. I sense the depression passing somewhat, but certainly not all of it. I was depressed before they put me on it, just not as much.

I’ve been trying to work off as much of my tension and fears in the yard the last few days. I’ve spread the rich composted “dirt” and planted Centipede seed there. I don’t know if any of it will grow, but the weeds are sure enjoying the rich dirt. I can’t very well pull the weeds, as the grass is still germinating. The idea is to let the growing grass choke out the weeds on its own. Since that section of the yard is pretty much finished, I’ve moved to a small section of grass at the front of the house. I’m wetting it down at night and then working on digging all the grass weeds out of it the next day. The hoeing is very therapeutic. It’s kind of like a punching bag for me.

My biggest problem right now is that I can’t get out in the yard without setting off a poison ivy outbreak, no matter how hard I try to stay away from it and bathe as soon as I come in. I’ve been super itchy now for some time, because I don’t want to take any antihistamines on top of the Clonazepam.

I’ve been trying to read about Tardive Dyskinesia, which certainly seems to fit what I look like these days. I can’t even spell it right half the time, but Google very nicely suggests how to spell it for me. If that’s it, then I can add TD to my list of acronyms.

My mouth is definitely jerking and twisting more as the Clonazepam dosage is reduced in my system, but they have told me that there are other prescriptions they will try to reduce the tics and jerks, once I’m off this med. And I’ve started chewing sugarless gum a lot, too, as that keeps my mouth busy. I chewed so long last night I made my jaw hurt, but at least I didn’t have my mouth pulling to the side and twisting all around. I will definitely be using this trick in public, as I am extremely self conscious about the way my face looks now.

Our wonderful pharmacist has printed out all the prescriptions I have been on since he opened his store some years ago. I haven’t yet tried to track down where my records would be stored from the previous drugstore, but he suggested I try the CVS in a nearby town. We went without a drugstore at all for quite awhile there, as the previous pharmacist gave up his store to work for CVS. I haven’t called yet, because it is likely a waste of time. But I will call. I’ll just have to be in the mood to do it.

I’ve tried researching every medicine that I can remember ever being on, and a few are possible causes. But there’s nothing to be done, other than try to deal with the symptoms. Tardive means it’s a delayed reaction, so there is no med to “stop taking” to make the movements go away. Our family has always joked that an aspirin will put me to sleep, so I suppose it’s not surprising that I would be one who had a delayed side effect to some medicine I’ve taken in the past.

I haven’t been going to the Parkinson’s forum. I just don’t know what to say there any more. I guess I would still qualify for membership, since I’m dealing with a Movement Disorder of some kind, but I just don’t feel like I fit right now.

Hubby has been a big help, and isn’t mad at me any more about my reaction to the doctor’s news. He’s such a sweetie, and I know all this has been really hard on his emotions, too. I don’t know what I would do without him.

I ran across a copy of Michael J. Fox’s book, Lucky Man, at a yard sale not long ago, and I finished reading it last night. There were several things in it that made me feel better about myself. He talked about all the things he did to make his early tremors stop – how he tricked his brain – so he could hide it from the television and movie audience. That process of being able to temporarily stop a tremor with little mind and body tricks is one reason I thought I was suffering from a psychosomatic illness. I did not realize that at least some people with PD can consciously stop tremors momentarily. I have feared from the very beginning that being able to stop them for a brief while meant mine were not “real.”

So, as it stands now, I don’t have Peripheral Neuropathy, and there’s no way of knowing if I ever did or not. I’m inclined to think I did, but all the super nutritious foods we have been eating for the last two years, plus the Turmeric and all the vitamins and minerals I take, just healed the nerve pathways.

Parkinson’s is likely not the problem, although I have not ruled it out completely, as the doctor’s always hedge what they say about that. I do have a Movement Disorder of some kind, and I am getting past the point of blaming it on myself. That’s a good thing!!

Reading Fox’s book helped me, so I hope that reading this blog can help someone, too.

Back to Square One Plus

Day by Day with a Movement Disorder Posted on by 6

OK, first of all the plus side of the meeting we had with Dr. Watt’s team this week. My fancy MRI and EEG did not show anything particularly abnormal, and certainly nothing that I need to be worried about. The ultra strong MRI did show signs of several Transient Ischemic Attacks, or TIA, what many people call little strokes. The doctor said they were normal “for my age.” (I hate to think I’ve reached the age where something wrong is normal, but I guess I have, huh.)

My reaction again is not what anyone would have expected. I guess I should have been jumping up and down with joy that I did not have a brain tumor, but all I could do was cry. The whole time he’s telling me that they didn’t find anything that explained my symptoms, I was jerking and wreathing all over the place. I asked him point blank if this could be that I’m just crazy, but he assured me that there really is something physical going on, they just don’t know yet what it is. If I understood him correctly, he says in time my symptoms will become more obvious, so they can make the diagnosis.

The Clonazepam had already made me very depressed, so I have been way low since Thursday. They are weaning me off the Clonazepam, since it did not help, and it was making me feel so depressed. I think they plan on calling in a prescription and trying something else, once I have finished weaning off the Clonazepam.

Hubby was really angry with me Thursday night. We finally talked about it yesterday, although I still begin to cry when I do discuss it or even think about it. He was so mad, because he said I acted like I was disappointed that I DID NOT have a brain tumor or some horrible disease. I really can’t explain it, but to have my body jerking and wreathing and nobody being able to tell me why is extremely upsetting. I know I should just put my faith in God, that this will either improve with time, get worse and provide enough information to make a diagnosis, or stay just the way it is now. If this is the way I will be for the rest of my life, then I am going to have to deal with it somehow. But for now, all I want to do is cry.

The only diagnosis they will even name as a possibility is Tardive Dyskinesia, which just means they think this was caused by some medicine I have taken some time in the past. Trouble is, whatever it was is obviously not in my system now.

They have told me for sure that I do not have Peripheral Neuropathy. I asked him if that meant the original diagnosis was wrong, or if it had been cured. He said it was possible that it was cured, but seemed to be leaning more toward the idea that the original diagnosis was incorrect. I did not get the nerve up to ask him if Parkinson’s was ruled out. That seemed kind of pointless right now, since Parkinson’s is so hard to diagnose anyway.

So, I’m left feeling miserable, with no coping strategies working for me at all. I’m crying even as I write this. I cried in church today. I cried in the car yesterday. That’s basically all I’m doing – just crying. It’s a grief that I can’t name, but it’s there.

Misery Loves Doesn’t Love Company

Day by Day with a Movement Disorder Posted on by 12

I am so counting the days until my appointment next week! The depression level I am feeling is so pervasive that I am not fit to be around right now. Hubby is doing what he can to leave me alone and not trigger another crying spell. Or worse, make me mad. We had an actual verbal fight last week, which is most unusual for us.

I knew when I worked in the basement while he was gone that he would be livid when he found out, but I did it anyway. I just needed to be “normal” for a little while so badly that I didn’t care that it would cause a fight. He won’t let me go down in the basement, because he is afraid I will fall. We do have a horrible mess down there, that needs cleaning out terribly, and I am much more impatient about it than he is.

I hate depending on someone else to get something done that I should be able to do myself. I hate being sick. I hate shaking. I hate being off balance. I hate being seen in public jerking all over the place. I hate using the cane and looking like each step is going to be my last. I hate looking old. I hate not being able to do any work in the yard long enough to accomplish anything.

But most of all I hate this horrible feeling that they are not going to find anything physically wrong with me, and that I am going to end up on some psychiatrist’s couch or on mind altering drugs. This Clonazepam is bad enough. I looked up the side effects, and depression and loss of balance are right there in black and white. I’m taking a med to stop some of the very things it will give me – doesn’t make much sense does it. I still have the strong mouth tics when I am the least bit upset, and my face is definitely beginning to contort, with right eyebrow high, left eyelid drooping over the eye, and mouth pulled to the left. It looks like I have had a stroke, and can’t control the left side of my face, but it’s actually quite the opposite, the muscles on the left pull it that way.

I did finally recuperate from the left leg weakness and pain left over from the EEG test, but my nerves have yet to settle back down from the super loud MRI last week. I’m crying at almost everything right now, and can’t stand noise at all. The loud TV commercials are bothering me so badly that hubby has started hitting the mute button when they come on. Last Sunday, for some strange reason, the young fellow who runs our sanctuary sound system had some of “his” kind of religious music piping in the auditorium before church. As far as I know that has never happened before. People were talking louder than usual to be heard over the extra noise. I sat there for a few minutes, and then told hubby we had to leave. I just couldn’t take it. So, we were some of the first folks at our favorite Chinese restaurant last Sunday. I went to church that night, and it was fine. But that morning was horrible.

I am not sleeping as well as I was, either. Some nights have been good, but there have been a few of the kind I used to have, where I am up at 3 or 4 in the morning. I am not using the TAP, as I just don’t think I can deal with it right now. Somehow I just have to make it through until next Wednesday.

I’ve completely rearranged one of the bedrooms we keep part of our plush lovies stock in, and I have worked some in the yard, trying to get the area ready to plant grass where I worked on the lasagna compost all winter long. I’m trying very hard to stay busy and focused on something besides me, but it ain’t workin’!!

Wow! That was quite a rant, even for me!! But it felt good to put it down on paper and acknowledge it. It’s real, and I’m not exaggerating. Hopefully, I will be able to look back on this post soon and be thankful it is all over. I always cling to hope, even in my darkest despairing times. God is good. AMEN!

I Have Been to THE Appointment

Day by Day with a Movement Disorder Posted on by 8

Well, we went Thursday to see Dr. Watts, the head of Neurology at the University of Alabama in Birmingham, who has a great reputation as a Movement Disorder Specialist.

We were both very impressed with how personable he is. One of the other doctors on his staff did all of the preliminary questioning and testing. He was very easy to be with, too. Most of the tests were ones I have been asked to do many times in the last couple of years. A few were different. They both had me make big smiles with my teeth showing several times, which is not something I remember being asked to do by anyone else, and Dr. Watts had me repeat a few of the tests the assistant had already done.

They also gave me the impression that my family history of neurological problems is an important clue – mother with Senile Parkinson’s or Alzheimer’s – uncle with ALS – aunt with depression, drug addiction, alcoholism – grandfather was senile, possibly Alzheimer’s? Until they asked lots of probing questions I had never connected my Grandfather’s behavior and my Aunt’s behavior as being pertinent. That’s why doctors ask things over and over, isn’t it.

Of course, they asked me a million questions about what my symptoms were like, and when and how they started, many questions asked several times. Some I could answer, and some I really couldn’t. He was very interested in knowing about anti-depression and tranquilizer drugs I have taken in the past. I have been on several for short periods of time because of the stress of caring for our parents and our daughters, but I couldn’t tell him much about which ones I have taken. I should be able to get that information from my Primary and from our Pharmacist, plus I rounded up a bunch of prescription bottles of them that I had kept – just in case.

Dr. Watts sat down right in front of me, looked me in the eye, smiled, and talked with me. I had no sense of him being in a hurry to move on to the next patient. That is so rare in doctors these days, and certainly not what I expected out of such a highly renowned specialist.

OK, so now to what happened. I put on quite a show of jerks, tremors, and facial tics the whole time, partly because I was so nervous about what they would find or not find. There is a big part of my mind that is just sure this has all been a psychological problem, but at least he never said that. At least not yet.

I gave a pint of blood in the lab (OK, so I’m exaggerating – but it was maybe 8 vials full), looking for some clue as to what is going on. He talked to me about the possibility of some kind of antibody/autoimmune problem where my own body is causing the problems. He also seemed to think it might be symptoms caused from one of the medicines I have taken in the past.

He has also ordered an MRI at UAB. He says their MRI equipment is different from others I have been in, in that it is more powerful and may see something that the others did not. Plus, it’s been 2 years since I had a brain MRI, and whatever is going on might show up now that hadn’t progressed enough to show back then. They will call me with that appointment, so I don’t know when that will be.

He talked with his assistant, Dr. D, about lots of things it might be, with all kinds of medical jargon. Dr. D was jotting down notes the whole time and seemed to be making a list of possible diagnoses as they discussed my symptoms. Every once in awhile Dr. Watts would ask me to do something or ask more questions. It was exactly like watching a real live “HOUSE” team in action. When he was through talking back and forth with Dr. D, Dr. Watts gave us a layman’s explanation of some of the possibilities. I am not going to list them, since obviously they can’t all be it, and maybe even none of them are “it”. I did come home and get busy Googling every term I could remember hearing them discussing. You knew I would do that, didn’t you. LOL!

He did put me on a titrating dose schedule of Clonazepam, to see if that would calm down the jerks and tics. He said I would be sleepy with it at first, but that this would wear off as my body adjusted to it. I am to take 1/2 tablet at night for a week, then morning and night, and work up to 1 full and 2 halves a day. I have an appointment to see someone else in the practice in May to go over the findings. He said that Dr. D and Dr. Watts would be in on the conference with us at that time.

At this point about all I do know is that it is looking less and less likely that I have Parkinson’s, but that I do have some type of Movement Disorder as yet to be named.

We’ve not told family or friends about all this yet. They know I had the appointment but not why I had it. We decided there was no point in making anyone else worry about all this. We will wait until we actually know something to tell them. I can write it all here, which helps me process it all, because nobody I know personally reads this blog.

Getting Back to “Normal” and Doing Some Soul Searching

Day by Day with a Movement Disorder Posted on by 17

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?