Tag Archives: care giving

Still a lot of Pain

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So far I can’t say the low dose Clonazepam, plus Methocarbamol has made a dent in the pain I’m having from constant muscle spasms. I spend most evenings wrapped up in a hot pad, moving it from place to place, trying to calm my muscles. I can manage to stay busy enough during the day to ignore it up to a point, but once I get still, I realize just how much “inside” muscle movement goes on constantly. No wonder I’m so tired by night time – I’ve literally been “moving” every minute of the day.

Being still at church makes me more aware of all the spasms, too. Plus, no matter how much I bundle up there, I’m always cold. And cold is something I don’t handle well at all. I wear thermal undies year round for church – AC and drafty heat both cause issues.

Care Giving Ended

Our short stent as Nursing Home Sponsors didn’t last but a few days – he wouldn’t stay, no matter how much better off he would have been if he had. I’ve called him a couple of times to check on him, but can’t stop worrying about him. That whole situation took quite a toll on my emotions – far more than the tiny Clonazepam pill could handle. I know it’s just a matter of time before he ends up back in the hospital. Learning from past experiences with our parents and daughter, I have his “hospital bag” all ready to go. LOL We’ve done all we can for him at this point, except for prayer – and God gets a lot of that every day, searching for insight on the right way to deal with him.

Need to Vent

I wasn’t supposed to see my Neuro again for 6 months, but at this point I will probably give in and call for an earlier appointment. It’s just hard to accept that there’s nothing they can do to help me feel better – no matter how many times I remind myself there is no treatment or cure for Mitochondrial Myopathy.

There are so many people in the world living with horrible medical and emotional situations, I feel ashamed of myself for whining. But it’s just one of those kinds of days, and I need to vent. I originally started this blog because I couldn’t find anyone talking about what it was really like living with a movement disorder. Oh, there’s plenty of medical information out there, but what it’s like to LIVE this way? Not so much about quality of life. So if I gloss over the bad days, I’m defeating the whole purpose of writing.

I thank you for your time to follow my blog and covet your prayers, both for us and for this cantankerous old man we’re trying to help.

Praise God for all His Blessings!!

Emotions and Muscle Spasms Stronger

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I’ve been having problems with acute emotional reactions for several months now – sometimes extremely nervous and very easily startled. Loud noises are especially uncomfortable – almost like I have super hearing. I had a lot of emotional lability (more recently called Pseudobulbar affect) years ago, when I was wrongly diagnosed with Parkinson’s.

For the last few years I’ve been living off of Methocarbamol muscle relaxers and Neurontin for nerve pain, and taking a large number of supplements in an effort to keep my nutrition level as high as possible.  But it was taking higher and higher doses of muscle relaxers to get any relief, and the shoulder jerking had even come back. So I asked my Neurologist to try something different.

Since I was experiencing heightened emotional responses, as well as more and stronger muscle spasms, he put me on a low dose of Clonazepam – an anti-anxiety med that is also used off label to calm muscle spasms. I started on the lowest dose, but now I’ve bumped it up a bit. It does seem to be taking the edge off the startle reflex and inappropriate nervous reactions, but the muscle spasms continued to worsen.

Trying Clonazepam

Several weeks ago my calf muscle cramped hard just as I put weight on that foot, and down I went, falling flat on my face. I was very lucky to only have a few bruises. The leg continued to jerk fiercely for several days, so I had to be extremely careful to not take a step without holding onto something. I called the Neuro’s nurse, and he added the Methocarbamol back with the Clonazepam.

I’m still spasming more than I was for a while, so I spend most evenings on the hot pad trying to relax the muscles.

I’m extremely thankful that I had already asked for more help from my Neurologist and there had been time to bump the Clonazepam dosage up a bit before a new turmoil hit our lives.

Care Giving Again

We are now back in the “care giving business”, trying to help a friend deal with a serious hospital stay and accept a Rehab Nursing Home situation. He’s not an easy person to get along with. He’s antagonized so many people over the years that he’s burned his bridges, except for a few families still willing to help him. It’s a shame, but he’s brought it on himself, with poor health management and lifestyle decisions and frequent angry outbursts over many years.

If it weren’t for the Clonazepam I don’t think I would be able to survive the emotional upheaval he seems to keep stirred up.

So for now at least my “new normal” consists of dealing with a cranky old man who is too sick to live independently. As his Nursing Home “Sponsor” there’s lots of paper work and responsibilities to deal with there, and of course Hubby and I will be visiting him once or twice a week.

The rest of the week I’m trying very hard to relax and rest as much as I can. I’m very thankful that my dear Hubby is so supportive, picking up the slack around the house when I don’t feel like doing much. We make a good team.

God finds good use for all our life experiences, so being care givers for our Alzheimer’s parents,  parenthood, plus teaching school for 29 years have prepared us about as well as anyone can be ready to deal with a curmudgeon in failing health LOL.

We covet your prayers both for him, and for us!

My Open Muscle Biopsy Experience

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I had my muscle biopsy last Thursday after what seemed like an eternity of waiting for the appointment to finally come. It turned out to be in my deltoid muscle, not my leg, which suited me just fine, considering how difficult walking is for me already. They numbed me up with Novacaine so I couldn’t feel anything, and since it was right near my shoulder I really couldn’t see what the doctor was doing, either.

The doctor, whom I had found so difficult to understand when we saw him back in October, did the biopsy, and he and I chatted quite a bit during the hour plus procedure. I’m glad he was the one who did it, because it gave me a chance to develop some rapport with him and get used to his speech. I feel MUCH better about having him as my doctor at UAB now.

I told him about how much pain my neck had been giving me since the 3 hours of lying flat during all the tests in November, and he gave me a prescription for a muscle relaxer that has helped a lot. As weak as my muscles are it never occurred to me to ask for such a prescription, but I’m glad he offered it! I’m still using the cervical collar while in the car and when I’ll be out of the house for extended periods of time, but my neck and back are definitely less painful at home.

I was pleased that he had been impressed with my complete medical history printout I gave him back in October.

We have had extensive experience as care givers for our parents, and we learned quickly that doctor’s appointments were much more productive if I brought complete and easy to read information to each appointment.

So as soon as I was diagnosed with Parkinson’s back in 2006, I started keeping a journal and also created a Word document in table form detailing all my medical history from birth to the present. Thank goodness I had copies of our life insurance application forms, or I would never have been able to resurrect all the dates of my surgeries and life events. It’s very easy to update the document with any new test results, prescriptions, drug reactions, etc. So I print out a new copy each time I go to a doctor and always give them the front sheet with the most pertinent information on it. If they need a full current copy I have that for them, too.

I had done a good bit of online research about how the biopsy would be done, but somehow I didn’t realize just how big a sample they would be taking out. I had an open biopsy, rather than a needle biopsy. He took a piece of muscle tissue from my upper arm about the size of the last knuckle of my little finger. I was able to keep my knees bent the whole time, so I didn’t end up with as much back pain as I did last time.

Since I’m diabetic I have to wait 10 days to have the stitches removed. I was sent home with antibiotics to take, as well as pain meds. And I really was in a great deal of pain, which surprised me, too. I guess if I had realized what a big hunk of me he was going to take out I would have realized I was going to be very uncomfortable. I’ve been off prescription pain meds for several days now, but still use Tylenol sometimes.

I was also surprised by how little I was able to use my arm – almost nothing at first, but still difficult even now after 8 days. I’ve pretty much lived in sweat pants now since the biopsy, even wearing them when we go out Christmas shopping. I had no choice. The first trip out after the biopsy to get a sandwich and do a small amount of shopping I didn’t stop to think and wore my elastic waist jeans, as I normally do. That was stupid, because hubby had to help me get INTO them.

Well, I had to use the restroom while we were out – and I couldn’t pull my pants down one handed! I’ve done my share of going into the bathroom with my father-in-law, who had Alzheimer’s, but this was the first time someone ever had to go in a public bathroom to help ME. Hubby helped me of course, but he understandably wasn’t comfortable being in the women’s restroom, even though we made sure it was empty. It really makes you appreciate businesses that provide Family Restrooms for situations such as this.

I was told not to lift anything heavier than a plate of food. I’ve learned to do a lot of things left handed and am gradually using my right arm more and more. Hopefully when the stitches are out and the heavy bandage is gone I will be able to quickly get full range of motion back.

As for test results – it will take 3 weeks to get that back, so we’ll just enjoy Christmas and possibly New Years before we hear the results.

This is an expensive invasive test that is not performed if there is any other way to obtain a diagnosis, but I’m glad I decided to have it done. I’ve said it many times while my diagnoses kept changing that I can deal with the Devil I know much better than I can the Unknown.

If you’ve read this far it may be because you are considering having a muscle biopsy. I pray that you get definitive results that will help your medical team provide a beneficial treatment regimen for you. And we pray for that for me as well, that the Neuromuscular Specialist will be able to determine what type of Myopathy I have. We are praying that it will be one of the types for which a treatment has been developed.

May you have a Blessed Christmas!

Removing the Mystery: Top 49 Blogs about Parkinson’s

Day by Day with a Movement Disorder Posted on by 4

We were notified today that our blog has been included in what appears to be a very good list of blogs and news sites about Parkinson’s and Movement Disorders, from not only the patient’s perspective, but also from caregivers and physicians.

A lot of these blogs and resources are already listed on my sidebar here, and I will be adding some more, I’m sure, as I have time to check them all out.

It feels good to be validated for what I’ve tried to accomplish here over the years – from when I was first diagnosed with Parkinson’s Disease, to the change in diagnosis to Essential Myoclonus, and then the addition of Type II Diabetes and being a care giver to the mix. During that time I’ve tried to write honestly about my emotional state and the problems I’ve had with side effects from the medications and my symptoms.

I want to say a sincere thank you to those of you who have encouraged me along the way with your comments and prayers.

YARD SALE today!!

Day by Day with a Movement Disorder Posted on by 7

Well, I’ve worked myself ragged this week helping move things out to the garage for our big yard sale, and now comes the moment of truth! Did we set the prices too high? Are they too low?? Should be a fun day, with beautiful weather.

Once hubby decided it was time to have one he really got busy, and there’s no way I could have done this on my own. I’m pretty sore from helping to move furniture around, plus lots more walking and lifting than I have been used to. It’s been good for me, as long as I didn’t over do it. Only time will tell on that one.

We managed to get quite a few of the boxes from my parents’ house out there, so that will free up some space in the house. Anything to cut down on the clutter will make it easier to get the rest of the last couple of years accumulation of stuff under control. I just have not felt like cleaning, and poor hubby has been doing the best he could to take care of me and take care of the house. I won. House lost. I’m sure not complaining, as he has done all the laundry for years, fixes meals, and waits on me like I was a princess. He’s the love of my life, and no one could ask for a better helpmete.

We swapped out recliners, bringing my mother’s recliner in the house and putting mine in the yard sale. Hers is a much smaller frame chair and really opened up the living room. I’ve slept in that recliner for several years taking care of Mama and Daddy, so I know how comfortable it is. It was a chore to make the swap with such bulky furniture, but I am glad we did. That is as along as our backs don’t complain too much!

We went to the dentist this week for our regular cleaning appointment, and this was the first time I had been back since the new meds and new diagnosis. I was fine until the next day, when I woke up with a very sore jaw. The muscles on both sides were aching from keeping my mouth open so long. At one point yesterday the right side started up with spasms. It was weird, because it made my eyeglasses move! I yawned some big yawns and did some exaggerated mouth stretches and managed to get it to stop, but that was another first for me. I hate to think what it would have been like if I were not on the Primidone. I probably would have bitten her hand off right there in the dentist chair!!

I’m back to the early rising again, and the change from Daylight Savings Time tomorrow is going to play havoc with my sleep for awhile, too. I get a lot done in the wee hours of the morning, but it sure makes me sleepy early in the evening. I’m like a baby getting my days and nights mixed up. But no amount of just laying there will help me go back to sleep, so I might as well get something productive done with my time, right?

One other thought before I put this rambling post away. I made the signs for the Yard Sale, and was very pleased with the results. It’s amazing how steady my hand is now compared to the way it was before the Primidone. I took drafting for 3 years in high school and taught handwriting in elementary school, so neat printing is something I used to be very good at. I had reached the point that my handwriting was difficult to read, let alone pretty. But this week I was able to free hand draw the letters and then go over the lines with a Sharpie and keep the ink where I wanted it!!! It was a wonderful moment for me, because it says so much about how much I have improved over the last few months.

Well, I’ve rambled on – not too surprising considering I’ve been up since 2AM – but feeling really good about my accomplishments this week. It may take a year, but I am going to win out over this messy house!

Twitching Along ….

Day by Day with a Movement Disorder Posted on by 4

We went on our usual Date Day today and visited three Estate Sales. Two were complete duds, but the last one was fun. It was an old country house chock full of a lifetime of collecting all kinds of odds and ends. We both enjoyed ourselves there, and then we stopped by our usual Thrift Store haunts in that area and found enough plush lovies to more than make the day break even. It’s fun having a hobby that pays for itself, plus helps other people, too.

We had our second meeting yesterday with our new Financial Adviser, in the process of deciding how to best protect our future and be sure there is money in place to take care of our needs. Our daughters know that we do not want to go to a Nursing Home, but realistically we can’t assume they will be in a position to keep one or both of us at home, the way we did our parents. That’s way too much a burden to blithely assume someone else will tackle. That means considering Long Term Care Insurance and putting money aside to pay for in home care if at all possible. We’ve paid out enough over the last ten years to know what is involved, and it’s certainly not cheap.

He went over several different options with us, and I was having a really hard time following the differences, pros, cons, etc. So was hubby. We asked lots of questions, some several times, and he patiently went over each concern. We left with several brochures, still not sure of what we need to do. We’ll see him again next week, after he’s had time to pursue the options we were most interested in. There will be a Long Term Care expert at our next meeting, too.

We won’t be able to settle some arrangements until I have a diagnosis. After all, what new insurance company would insure me for anything when my own doctor can’t say what is wrong with me! So, for now I am stuck with the insurance I already have, and we can only do the research for more appropriate kinds.

Did I say stress makes my twitches and tremors worse? Yep, you guessed it. By the time we left I was grimacing and shaking like I was keeping time to some peppy music. Hubby even asked me if I was doing my hand on purpose, because it really did look like I was in tempo with the CD. But no, it was my body doing its own little dance duet. I “cured” the nerves the way I always do …CHOCOLATE!!! Hubby knows what to do, so we stopped and I gorged on brownies. Better than any tranquilizer I have ever used, as there is no spaced out feeling afterwards. 😉

My Thanksgiving Prayer

Day by Day with a Movement Disorder Posted on by 4

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

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

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

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

Amen

Physical Therapy Continues

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I am shocked at how weak my right side has become. And a little scared, too, as I can see that I’m going to be in need of care giving a lot sooner than I had imagined, if I cannot regain at least a reasonable amount of my muscle strength. The PT has been very kind this week, and has allowed me to take the time to do the leg exercises on both sides, even though the “prescription” from the doctor only addresses the right knee. Actually, I don’t really think the knee is the problem, only the result. The real problem, which is definitely the case on both sides, but more so on the right, is that my hip muscles are extremely compromised. That’s causing the unnatural gait and putting the extra strain on the knee. The right one just complained more because of the stress shifting Daddy in the bed caused.

My shoulder is definitely improving, so that’s something to be pleased with, anyway. She didn’t even work on it yesterday, except for the electrical stimulation and moist heat therapy at the end of the session. I spent two hours there yesterday, just working on my legs and hips. Plus, we walked yesterday morning, and I did 3/4 of a mile, with the cane.

She wants me to cut back on the walking every few days to one or two laps to give my muscles a chance to recuperate, so I’ll just sit and watch DH finish his laps on those days. She tells me that the Peripheral Neuropathy causes my muscles to fatigue faster than normal and bounce back more slowly, so I have to be careful to not overdo each set of exercises and rest longer between them than other people would need to.

We chatted while I worked, and it seems that she has another patient right now with idiopathic PN, too. Idiopathic just means the doctors don’t know what’s causing it, which is true for me, too. Anyway, I gave her the address for this blog to pass along to her, and I hope she does stop by. I know it helps me to chat with people with similar problems, and it’s very hard to find much on the Internet about Peripheral Neuropathy that’s not caused by diabetes.

My hip sockets and upper thighs ached the rest of the day yesterday, so I ended up taking a Lortab to get to sleep last night. I do feel better this morning, though, and we won’t go to the track today, since it’s our Date Day. That will help my muscles rest and rebuild. She wants to see me two times next week, again to allow more time for the muscles to rest before the therapy sessions. Of course, I have my list of home exercises to continue, so I’ll still be getting therapy.

Oh, another thing I did yesterday was to stop and buy new bottles of my Centrum Silver and vitamin C+D. I found out at the eye doctor’s office the other day that not everyone can dissolve the wax that’s used to turn medicines into pills. That means some people pass the pills straight through their body without even getting any benefit at all. I had heard that before, that sometimes when septic tanks are cleaned out they are full of pills! So,to get maximum benefit, he told me to change to capsules or gels. Centrum doesn’t seem to come that way, so I got the chewable ones instead, and I found the C+D in gells. She also said I was not taking enough of the C for my Osteopenia (loss of bone mass that is not as bad as Osteoporosis), so now I’ll be taking those twice a day. She warned me not to try to just take one huge dose, though. She says the body can’t absorb more than about 500 units at a time.

Sorry to sound so depressing today, but this has really slammed home to me how much function I’ve already lost, with no way of knowing if I can regain it. I can only do my best to follow the PT’s directions and hope for the best.

Tearful Thoughts for RUTH

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I started trying to read and catch up on what’s been happening on everyone’s blogs last night, so a few of you friends you may have noticed a quick comment from me. I was grieved to read this morning that Ruth’s dear hubby, Mick, passed away on April 6. His passing was peaceful, with family there to share this precious time with him. Ruth is now dealing with all that has to be done, after faithfully taking care of him for the almost two years since he was diagnosed with cancer.

There’s just no way to put into words the depth of sorrow I feel for her, not so much that Mick’s struggle is over, but that this horrible cancer had to strike such wonderful people to begin with.

She’s sent me several e-postcards of late, just to let me know she was thinking of me. And all that time she was dealing with Mick’s eminent death, which, of course, I did not realize at the time. It just makes her cards that much more precious to know that she was taking that time for me. That’s just the kind of person she is!
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Lots to Do Settling Daddy’s Estate

Day by Day with a Movement Disorder Posted on by 12

This is the second time I’ve been the executor of an estate, but Daddy’s is much more involved than Pop’s was. Luckily, we have a niece who is a lawyer, so I’ll have some help when I’m ready. I’ve tried researching what I need to do on the Internet, and I’ve been surprised at how little help I could find. Everything seems to be geared toward Estate Planning, rather than settling an estate.

April 15th is getting closer, too, and I’ve just not been up to dealing with important numbers. I did get a good start today, though. Starting is half the battle for me, as I find I’ve become quite the procrastinator in the last few years. I don’t know if that’s a sign of old age LOL, stress, or Parkinson’s!

We walked again this morning, but I was slow as mud. I made it around for a half mile, using the walker. I’ve been using the walker all this week, but I depended on it more today, as I could feel the tightness in my shoulders when I stopped. That slow as mud feeling is the first Parkinson’s symptom I had, so it’s looking less and less like I’ll be able to continue on just the Zelepar. The Neurologist told me I could go back on the Requip as well, if I felt like I had to. I’ve resisted, because the Requip gave me stomach troubles last time. Well, I had stomach trouble when I was on the Requip – that doesn’t automatically mean the Requip was causing it. It’s that uncertainty that has kept me trying to do without it. I’m just not ready to cope with stomach side effects yet. Maybe next week.

I taught 4th and 5th graders for 25 years, but I’ve seen the “Smarter than a Fifth Grader” TV show a couple of times since I’ve been back home. It’s scary how much my mind goes blank on stuff I know I should know. I hope it’s just remnants of caregiver burnout, and not the PD effecting my mental abilities. Stress can really do a number on such tasks, so I’m trying really hard to relax as much as I can. But getting things accomplished is part of what’s needed to lower my stress level, too, so it’s a matter of finding a balance, I guess.

I continue to be uplifted by all the loving comments. You all really are helping. Just a thought for you, if you need to send a sympathy card to someone. One of our friends included a neatly cut out copy of Daddy’s Obituary notice in their card. It was very much appreciated.