Tag Archives: Physical Therapy

First Physical Therapy Session

Day by Day with a Movement Disorder Posted on by 7

I went back to the same PT I have used before, and I was fortunate enough to get the same therapist. She asked lots of questions about what brought on the stiff and painful neck. She manipulated my head, and we chatted a bit about how my diagnosis got undiagnosed. I gave her the link to Patients Like Me, and I hope she takes me up on the invitation to join.

She seems to think that the electrical stimulation (TENS) and ultrasound will help these muscles relax, and she expects to do some stretching exercises on Friday. Bless her heart, but she remembered that Friday was our Date Day, and apologized for messing it up. But DH will be fine with that, as this is only for a few weeks.

We did something this afternoon we have never done before. I made a smoothie! Hubby bought me a blender for Christmas, because I had said something about wanting to try some. I mixed a banana, raw spinach, a little parsley, some soy milk, and a touch of honey, and we both tried it. It wasn’t half bad, and we both drank it all. Not bad at all for my first attempt.

It always makes me feel better when I feel like I am taking control of a situation, and getting the PT started and learning a way to improve our nutrition is a good start for one day. Yippeeee!

Went Off PD Meds Temporarily

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I had my last PD medicine around 3:00PM Friday, so I have been without now for about 48 hours. I don’t know how much of those meds are still in my system, but I suspect there’s not much left.

So, how am I doing? Well, my right foot particularly, and the left to some extent, are shaking some, particularly when I stand in one place for more than just a few seconds. The wobbling foot and knee make my whole body rock rhythmically. It’s nowhere near as bad as it looked in Dr. S’s office Wednesday, but I was very nervous then, so the exaggerated gait was not overly surprising.

My right hand takes a notion to tremble off and on all day long, but I can usually stop it temporarily by thinking about it. Usually, I just start to jerk somewhere else, when I get one tremor stopped by relaxing and concentrating on just that one area. The facial and tongue tics seem to be worse, too, with me off the PD meds. Generally, I see an increase in jerkiness that moves from place to place as I consciously try to stop it elsewhere.

We haven’t told anyone in the family about this possible change in diagnosis, and don’t intend to, until it has been confirmed, and hopefully, we have a name for what is wrong with me.

I am going back on my Zelepar and Requip at 3:00PM today, and will stay one them at least until all the holidays are over with, and I am dismissed from PT. I probably will try going without again in February, just to see how I am doing then.

I wrote once before that having a neurological disease is like being in a clinical trial of ONE. It becomes very difficult to manage all the possible variables, and come to any kind of conclusion about the level of disability and what improves or aggravates the symptoms.

Life Goes ON

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My Physical Therapy office called yesterday, and the appointment is set for Jan.2, so that’s taken care of. I have been scouring the Internet, looking for some indication of the meaning of some of the neurological tests my Neuro did on me in his office the other day, but still not having any luck. I think I will end up calling his nurse, and see if she can help me understand what happened. We were both just in shock, I think, in his office, and I didn’t ask enough questions. Now I could kick myself for not asking dozens!!

Also, I am wondering if I should try to wean myself off of the meds he left me on, before I see the MDS in April. And I also need to ask if there are any tests that my Neuro should be scheduling before then, too. When I first went to Dr. S, he was less than pleased to see that the Peripheral Neuropathy tests I had already had were only on my legs. They did not test my arms. So it would seem logical to me to have that workup done again, but more thoroughly, sometime close to my appointment in April. Otherwise, I can just see it now. I’ll go in and talk to this fellow, walk, and get poked and prodded, and then he will order a bunch of tests, and I won’t see him again for another 4 months. This NOT KNOWING could last the better part of a year, if that’s the way it plays out.

I have been blessed with so many wonderful net friends showing their support and concern over all these mixed up feelings I am having. It’s humbling to know that all of you are out there, praying for me. With all that love coming my way, and God’s help, I am already beginning to ease out of the horrible funk this news put me in. I can choose to believe I have something worse than PD, or not. I choose NOT, doggonit!!

So, another Friday has rolled around. It feels a little different, with this uncertainty surrounding us, but we will find something enjoyable to do today, and life will go on. Our Christmas stocking gift hunt is finally ended, and it’s time to wrap the presents for the grandkids, and our children, too. I haven’t looked yet to see if there are any Estate Sales today, but I kind of doubt it. Who knows, we might go see another movie.

We enjoyed “Perfect Holiday” last week, as a light, entertaining, feel good movie, regardless of what the critics had to say about it. And we’ll probably end up seeing “Legion” today, even though the critics have panned it, too. Not every movie has to be Academy Award quality to be enjoyed, right? Although I am a little surprised that Will Smith allowed himself to be in a movie that was less than box office hit quality. From what I’ve read, it’s the Zombies that are so poorly done, not his performance. And there are some flaws with the premise of the story, too, which is what makes Science Fiction work as a genre. Once you have decided to “believe” in a certain situation, the rest of the story must stay true to that premise. From what the critics say, this one does not, and that’s a pity. But, flaws and all, I am sure I will enjoy it, as I really like his acting, and I am a Science Fiction buff from way back.

So our lives move along, and I will try to let go of these nagging thoughts, and look on the bright side of it all. I look forward to spending time with our family on Christmas Eve and Christmas Day, and not think beyond that for now. Here’s wishing you all a very happy Christmas time with your families, too!

This is a Hard Post to Write

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I saw my Neurologist yesterday, and it turns out I did have good reason to be apprehensive about the appointment.

First of all, he agreed that I did not have any business having the epidurals on my cervical vertebrae. So, I called my Orthopedist to let them know that they could schedule the Physical Therapy, but not the epidurals. They called back later, and have already faxed the prescription to the PT I used last time, which is close to home. So, hopefully, I will be getting some relief from the neck pain and stiffness soon. Holidays, of course, will be in the way of a regular schedule, so who knows when I will actually start the sessions. It could easily be the beginning of next year.

He also took me off of the Levadopa/Carbidopa plus Lodosyn meds that the ER doc had added to my treatment, since it didn’t seem to be helping much at all. Taking too much of these meds can cause dyskinesia, which is involuntary movements. That may be why I had such an odd tremor develop of late, plus all the facial and tongue tics I have been experiencing.

But the news from the exam that has me so upset right now is that he is no longer sure I have Parkinson’s. He watched me walk, and I was so nervous by then that he got to see me at my worst. Both legs bobbing up and down like I was trying to walk across the floor of one of those carnival blow up bounce machines, and having to hold out my arms to the sides to keep my balance. Turning around and coming back towards him was just as bad. He had me take off my socks and shoes, and he did all the usual hitting with the hammer. He scraped the bottom of each foot, and also suddenly pushed both feet straight up several times, in a slapping kind of motion.

I have had the foot scrape thing done many times before, and I know what that was testing me for – the Babinski effect. That’s a test I failed some years ago when I was seeing a different Neurologist for migraine headaches. As far as I know I have not failed it since then. It has to do with the way your toes curl or straighten out when a hard object is scraped from the heel towards the toes. The normal reflex is to curl the toes inward. If the toes spread out, with the big toe stretching upward, it’s a sign of a lower extremity nerve problem. I don’t know if I passed it this time or not. He didn’t say, and I was too upset to ask. I have tried to look up what the sudden slapping of my feet upward meant, as I have never had that done to me before, but I haven’t been able to come up with the right search terms yet to find out what that was all about. He did move my arms around, while I kept them relaxed, and said he did not feel any cog wheeling. That’s something he would expect to find if I had Parkinson’s, and he has said in the past that he did feel it. It has something to do with the tremors, but that’s about all I know about cog wheeling.

They have made an appointment for me with the Chair of the Neurology Department at the University of Alabama in Birmingham. He is the Movement Disorder Specialist in this area, and is supposed to be my best chance of finding out what is wrong with me. Parkinson’s effects people in so many different ways, it may yet turn out to be the PD that my Neuro had initially diagnosed.

But for now, he has listed my diagnosis as the Peripheral Neuropathy plus Gait Debility. I’m back to that “not knowing” stage, and it is extremely upsetting for me, and for my dear sweet hubby. Of course, as you might expect with the chair of the department, I can’t get an appointment until the end of April. That’s going to be a long, long wait that is not going to be easy.

I felt such relief when my Neuro put a name to what was happening to me – even if it was that I had Parkinson’s. Now I am in limbo again, and I hate it.

Hubby has asked that I stop reading and researching about Parkinson’s for awhile, just to be sure that I have not been subconsciously absorbing the symptoms that I was reading about. That’s a fair request, so I have said a temporary goodbye to my Parkie friends on PatientsLikeMe, and will not be doing any PD research for awhile. I am going to continue to try to find out more about Peripheral Neuropathy, though, because there is no doubt that I have that. Unlike Parkinson’s, there are definitive tests for PN, which I most definitely have.

I don’t know how to adequately explain how I am feeling about all this right now. It’s almost as if I found out I was adopted, or something like that. It’s like my identity has been ripped to shreds, if that makes sense. I have developed some really close friendships with some wonderful PWP over the last year. Now, with one sentence, my Neuro has put the nature of that relationship in limbo.

This NOT KNOWING stage I am in again is very hard to deal with. I am vacillating between being scared of something worse than Parkinson’s, and being relieved that it could be something less progressive in nature than PD.

God is forever trying to teach me patience, and reliance on Him, rather than my own abilities. Looks like He is working on that big time right now. We haven’t actually said anything out loud, but I think hubby and I are going to keep this turn of events to ourselves for now. I can’t see any good reason to add this uncertainty to our children’s lives. They have enough to worry about on their own. So, I will pour out my feelings here on my blog, since no one who knows me personally ever reads it.

Sitting MRI and a Full Night’s Sleep

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Well, I had my Standing MRI on my neck yesterday. I was having some strong tremors when I got there, so the technician changed it to a Sitting MRI! LOL!! He also put a lightly restraining halo on my head, and I managed to stay still through the whole 30 minutes. He said I did just fine.

Of course I won’t find out anything until next week probably. I’m guessing that he will prescribe Physical Therapy again, particularly since I had such a terrible reaction to the Celestone steroid shot for my poison ivy. It depends on just how much damage he sees, I guess.

I have my Neurologist appointment next week, so I will be talking to him about how I should proceed. He may have me stop taking the Zelepar, as that seems to be the med that gives me the most interaction warnings. It does not play well with others!

I have an appointment with my Sleep Apnea Specialist next week, too. He should be dismissing me, hopefully. I am sleeping a full 8 hours almost every night now. And it has made a miraculous difference in my daytime sleeping. Actually, I’m not having ANY daytime sleeping problems, now. I can ride in the car for hours now, and still carry on a conversation with my DH. It’s been years since I could do that. No more jerking awake at the computer from a few seconds of sound sleep out of nowhere. And, I am still on the Requip that gets blamed for this side effect. It wasn’t the medicine after all for me. I was just sleep deprived!

It’s so gratifying to see improvement even in one area of my health. And I have high hopes that Dr. J will fix the pain and stiffness in my neck.

Looks Like I Can Cross Sleep Apnea OFF My List!!

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I have slept longer and waked more refreshed almost every night now for over a week with the dental appliance set to a very comfortable amount of lower jaw extension. I’m not having as much trouble with daytime sleepiness, except for the odd woozy feeling I get after lunch. So, unless something unforeseen happens, I am going to cross Sleep Apnea off my list of problems! That feels so good, to have one less thing going wrong with me.

My neck continues to spasm, so I guess in a way I have traded one problem for another. But I know that will either work itself out, or I can go to my Orthopedist and he will deal with it. If it has not relaxed by Monday, I will make an appointment. I suspect he will give me a prescription for some Physical Therapy. That’s why I stopped going earlier this year when my knee was so painful. I wanted to be sure I had some PT time left, as my insurance only covers 15 trips a year, I think it was. Anyway, I know I have some sessions left, and that will be enough to get this painfully stiff neck relaxed, I’m sure.

I am in an optimistic mood, and have been for some time now. It feels glorious!! Even my elimination seems to be getting back to normal. The combination of Bentyl, the antispasmodic and mild antidepressant, the extra Metamucil capsule, and the Acidophilus, have done the trick. I still have gas problems, as I try to figure out which foods I will have to delete from my diet, but that is so minor a problem compared to what I was dealing with.

So, this is going to be a great day! I just feel it!!

Digestion Problems Worsen

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I have an appointment with my Gastroenterologist for this next week. Even though I have faithfully taken the Myralax each morning, take Metamucil every day, have been on the Bowel Retraining regimen, using the glycerin suppositories, and I’ve been really careful about what I was eating, I’m still having bowel problems. For lack of a better word for it, I would call it constipation, but it’s more like the colon and rectal muscles just are not working properly. Before I was diagnosed with PD last year, I had a four month bout with diarrhea that was very difficult to stop. The Gastro treated me with the same meds that would be used with colitis and Irritable Bowel Syndrome, so that may be what’s going on now. From what I’ve read, the IBS spasms can cause some really strange symptoms, which fit mine fairly accurately. I won’t gross you out with any details. Let’s just say things are not as they should be.

Other than that, I can report positive improvement with my right knee, which I had twisted again. We took off several days from the track, I have been staying on the computer more and reading more, and generally letting it rest. I did walk 1 quarter mile lap yesterday, and another today. Mostly I’ve been doing the exercises that the Physical Therapist outlined for me. I’m thinking I probably need to get some kind of knee brace to use in situations that might aggravate it, such as the clearing out I was doing of Daddy’s things that set this episode off.

So, I wait for the Gastro appointment, look forward to the Sleep Study next weekend, and baby my knee while it slowly heals. DH, as always, has been super considerate. He keeps me laughing over his foolishness and does so much for me. No one could ask for a more loving and caring helpmete.

43rd Wedding Anniversary!

Day by Day with a Movement Disorder Posted on by 8

How about that! Yesterday we celebrated our 43rd wedding anniversary. We’ve actually been seriously in love since 1960, but we waited for me to graduate from college before we got married. I wouldn’t recommend that long an engagement to anyone, but getting my education was important, and it’s helped our family financially all these years.

We went to a movie and ate out and generally enjoyed being with each other, as we always do. I would wish that all marriages could last so long with so much love still there after all the years.

It did get me out of the house and away from all these estate issues. We’ll go to the bank today and open the ESTATE bank account and change over all the CD’s to our name. That will be a couple of more things I can then cross off my task list, which is a very satisfying thing to do.

What with all the stuff we’ve been cleaning out of Daddy’s house, I finally got up the gumption to clean out Pop’s closet at our house. My FIL lived with us the last few years of his life, and when he died, I just couldn’t bring myself to deal with his clothes. They weren’t really in my way, so I put it off. Well, now I need the closet to store some of Mama and Daddy’s stuff until we can sell it on eBay, so all of Pop’s things are bagged up and ready to give to the Thrift Store. I will have to get the name tag labels out of everything, though, as he was in an Assisted Living home his last year, and everything is marked.

I’ve finally worked our eBay store back up to 250 items listed, which is about all we can afford at one time. Maybe now some other things on my To Do list can move up the line.

I did sleep longer last night, but it was because I took a Darvocet last night. The movie gave me a headache, plus I was generally achy all over. I think I’ve been over doing it lately, trying to box a lot of things up. Doing a lot more leaning over and picking things up than I have in a long time, and my muscles are complaining about it. Walking is great, but it doesn’t take care of all the muscle groups. I have been doing some simple arm exercises with the 1 lb weights, and I’ve gone back to doing all the neck and shoulder exercises that the Physical Therapist put me on some years ago for the degenerated disk in my neck. I continue to do the Tai Chi, as well, so I’m really trying to build up my muscle tone. I do have a set of exercise videos that I bought several years ago, but that means getting down on the floor. Getting down isn’t the problem .. getting back up is! LOL So, I’m postponing using them for awhile. I figure by the time the weather turns cold I’ll be strong enough to get up and down safely.

We’re still waiting for them to start work on our new garage, as we special ordered everything to match our house. I’m getting antsy, seeing that beautiful driveway and slab, with no building going on. But it will come, sometime soon. I just need to be patient.

Our older DD and SIL have moved into Daddy’s house, in the midst of quite a mess. I’m glad it’s them and not us!! But youth puts up with stuff that age can’t or won’t. We’re working as hard as we can to empty the house of all of my parent’s things, but it’s a slow go.

So, I continue to stay busy, improving little by little each day. Crossing things off my list reduces my stress level, so I rejoice every time I finish one small part of this huge undertaking. Some days I have to hunt for something to feel positive about, but I work hard at staying optimistic. Thanks to all of you dear friends for your encouragement!!!!

I Should Hang My Head in Shame LOL!

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I’m sorry. I’ve really been missing in action lately in the Blogosphere, but I just don’t seem to be able to get everything done in a day that I want to accomplish. And, as much as I enjoy blogging, it is not a top priority.

OK, apology aside, here’s a brief recap of what’s kept me so busy. First of all, we’re still fully involved in settling Daddy’s estate. Thank goodness we have a lawyer in the family!! We received the Letters Testamentary the other day, so I’ve had Daddy’s car worked on. It’s ready to try to sell now. I’m not looking forward to that, but hopefully it won’t take long to find a buyer for the price we want for it. We’re meeting with our DD and SIL and the mortgage person at the house tomorrow to fill out the sales contract on the house. There’s been a good bit of talking back and forth to get all the particulars of the mortgage worked out to our satisfaction, but it looks like they will close within the next two weeks.

We’ve also been busy having a driveway and patio put in and the foundation for our new garage. We’re waiting now for the special order materials we have chosen that will match our house. We were very pleased to find the same siding and shingles we already have are still available. Once we have the garage, we will be bringing the stuff out of Daddy’s house that our daughters do not want, and then we’ll be having a huge yard sale!! It may be fun to go to them, but it won’t be fun to have one!

We have continued to go to the track, and I’m continuing to get stronger. I feel really great in the mornings, and it’s hard to make myself quit, when I feel like I can do more. But, by the afternoon, I’m dragging, and by night time, I am worn out and sore. You’d think I’d sleep well with all this activity, but I’m getting about 4 hours a night. I just don’t seem to be able to stay asleep long at all. And the sleeping pills don’t help, either.

I’ve been extremely busy with our online business, too, trying to get our listings on eBay back up to our normal number. We have kept on buying, for the fun of it, even though we were not listing much. So now, it’s list or not be able to move around our own home!!

Decided Against It

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I do appreciate the feedback you gave me on the decision about joining the St. Vincent’s facility, but we finally decided not to do it at this time. Time was, after all, the deciding factor. It was going to eat up about 3 hours each day I went, and to get any good out of it, I would have to have gone at least 2 days a week, if not 3. I think I can accomplish just about as much with home exercise equipment and our time at the walking track, which is about 5 minutes from home. Of course, in this day and time, we have to take gas prices into account too, and we do live a long way from any of these kinds of sports facilities, with some really bad traffic to contend with both ways.

I continue to accomplish more and more when I exercise in the mornings, but I’m paying for it each night with a lot of sore muscles. DH fusses at me for over doing it, but it doesn’t ever seem like I am at the time. It’s only later in the day that I realize I’ve over taxed my muscles. I think some of this pain I experience is coming from the Peripheral Neuropathy, particularly since I went off the Cymbalta. My Neurologist wasn’t the least concerned about me taking it in conjunction with the Zelepar, even though the Pharmacist had warned me about the combination. So, I may yet go back on it. But for now, I’m still adjusting to adding the Requip back to my meds, so I don’t want to add 2 new drugs at the same time.

The Requip is beginning to upset my stomach, just the way it did last time. I’m having lots of heartburn and belching a lot. Nothing else has changed, so it has to be the culprit. I’ll put up with it if it doesn’t get much worse than this, but I’m still planning to ask for the Neupro patch when I go back to Dr. S in June.

Just to document where I stand physically:

I can now sit down and stand up from a straight chair without using my arms, at least in the morning. I can’t by the evening, though. Sofas and soft chairs I haven’t mastered yet. I can walk over 3000 steps a day on the pedometer most days. I’ve put the handicap toilet seat away for now, as I can deal with the standard one, as long as I have the sink cabinet to hold onto. I’m still using the cane when we go to yard sales and such, where the terrain is unknown, and I still don’t go up and down flights of stairs if I can avoid it. Crouching down to get things in and out of my kitchen cabinets is difficult, so I usually depend on DH to do that for me. I lose my balance too easily, particularly with something in my hands. My core muscles, those of the trunk, are definitely getting stronger as I continue to exercise, as I can now lift my behind when I do what’s called the Bridge. It’s a simple exercise, really. All you do is lie on your back, feet on the floor, with your knees raised, and try to lift your bottom. Until recently, I couldn’t lift more than a half inch or so, but now I’m coming completely off the floor.

I’m doing the Tai Chi short form almost every day now, and I’m getting pretty good at it again. My balance continues to improve.

The biggest problem I am having right now, I suppose, is the insomnia. As soon as I started back on the Requip, it started back again. I haven’t been able to sleep past 3:00 AM for some time now. I get a lot done on the computer, but I really need the sleep! I’ve tried napping later in the day, but that doesn’t work unless I’m in the car. Then I can doze off almost instantly ;).

So, I am progressing, but I have lots of room for improvement. Eating healthy foods and exercising are just as much medicines for me as anything that comes in a bottle!