Tag Archives: Parkinson’s

40 Blogs to Follow for Parkinson’s Awareness Month

Day by Day with a Movement Disorder Posted on by 2

We’ve been included in another site’s list of top Parkinson’s blogs! I feel very humbled to be recognized in such an article. Each blog has a short description of its content and focus and would be an invaluable aid to a caregiver, newly diagnosed Parkie, or long time PD patient who needed to make contact with others who understand what living with Parkinson’s Disease can be like.

This blog is included, because my original diagnosis was Parkinson’s, and you’ll find many posts about my efforts to deal with those changes it made in my life. Also, I have accumulated a lot of resource links on the side bar dealing with all kinds of Movement Disorder related issues.

I think back on my early frustration at how few places there were on the Internet to get a glimpse of what it was like to live with Parkinson’s Disease. I decided then that I would try to keep that from happening to the next person who tried to get a personal view of living with Parkinson’s. Now I read about all these great blogs available, and it makes me glad that I have had a small part in helping people understand not only the physical, but the emotional and mental side of being a person with a Movement Disorder.

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.

I’m Using a NEW Search Box

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I’ve been very unsatisfied with Blogger’s Search Box for a long time, but hadn’t found anything free that worked any better. I can say with relief that I think I’ve found something that will help you find what you want to read about.

You can now search for Parkinson’s and actually find all my posts concerning this important part of our site, rather than just the more recent ones. You might also be interested in our posts about diabetes, improving our diet and losing weight, exercising, digestive and elimination difficulties, brain fog, or Essential Myoclonus, the Movement Disorder I am currently being treated for. You will find posts dealing with our family’s roles as caregivers, too. Along the way there are all kinds of posts dealing with achieving the best Quality of Life, which is very important to me, and my strong belief that God will see us through whatever we have to face in this life.

In case you have a site that could use a better search box, I’m using http://www.freefind.com/.

I’m Still Losing Weight

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Well, I have exceeded my goal weight loss by several pounds, and even though I’ve quit counting calories, I’m still losing weight. It’s just as slow a weight loss as it was all those months of trying, but losing it I am. And I’ve been allowing myself the occasional milkshake or pizza, as the mood strikes, too, without regard for calories or lactose intolerance or blood glucose numbers!

I guess I’ve just gotten so used to eating less that I am still “on a diet”, even though I’m not trying. Hmmm… anyone want a milkshake?

I’ve finished reading Dan’s book, I Will Go On, and I’m in the process of re-reading the chapters I found most inspirational to me. I can’t say that I “enjoyed” the first few chapters, but the bulk of the book more than made up for the opening explanation of the various types of Parkinson’s Plus disorders. I would still recommend it as great reading for anyone dealing with PD, or any Movement Disorder, either as the one with it, or as the care giver. I didn’t find the explanations that helpful, as I’ve already read all this many times before in my own Googling, but I would think that anyone new to PD Plus would find this layman’s explanation of all the variations of severe Movement Disorders to be very useful.

I can only be thankful to God that I have a relatively mild Movement Disorder.

Hubby and I have noticed some occasional tremors in my right hand that aren’t as jerky as my foot, shoulder, and face can get at times of stress. It’s nothing to be concerned about, but worth noting, in case it becomes more frequent. I will be able to look back here and see about when we first started seeing it.

When I was first diagnosed with Parkinson’s, we bought a notebook to log any and all symptoms, doctor’s visits, meds, etc. And I kept it up religiously until after the MDS had changed the diagnosis to Essential Myoclonus and had me on Primidone, which worked wonders for me. But I’ve long since quit writing much in it, depending more on keeping track here on my blog of our war on my Type II Diabetes diagnosis. I would recommend the journal method though, for anyone with a progressive disease, such as Parkinson’s. It’s great to be able to answer the doctor’s questions about onset of symptoms by turning back in a journal to the first entry for a given situation. And it’s much easier to keep track of the side effects of meds, etc., too.

There have been some family issues that have kept me somewhat depressed and definitely more tense of late. I don’t handle my emotions as well as I used to, either, so it’s affecting me more than I would like. It’s just something I need to work on. I know that with God’s help I can meet anything that comes my way.

I recently started trying to memorize scripture verses, both as a way of drawing closer to God and to also exercise my memory. I’m picking verses that I already know in a general way, and now I’m trying to learn where they are in the Bible and learn the exact King James version of them. That’s the version I grew up with, so it’s best for me to use. I know a lot of scriptures in a paraphrased sort of way, but, with few exceptions, I never learned their location in the Bible. I regret that I did not master these verses a long time ago. I can certainly tell that my brain is not as sharp as it used to be, but I’m glad to see that I am having some success.

So here I am at this moment in time, with some successes and other situations I continue to work on. Life is good.

I Will Go On by Dr. Daniel Brooks

Day by Day with a Movement Disorder Posted on by 4

Dan Brooks has written a book about his fight to preserve himself as his body deteriorates, I Will Go On, and I bought it the other day on Amazon. I’m glad I did.

One of the best things about blogging is getting to know people you would never have the opportunity to meet otherwise. I have been following Dan and his journey through his aggressive form of Movement Disorder for some time now on his blog, and I’m always encouraged and uplifted by his strength of character and determination.

I’m not too far into the book yet, but I can tell you right now that it should be required reading for anyone who is facing Parkinson’s, and for their care givers, and certainly for those who appear to have one of the rarer forms of Movement Disorders that have Parkinson’s symptoms plus other brain dysfunction symptoms. For those like myself, who have a mild form of a Movement Disorder, it helps to put my minor problems into perspective. For those with rapidly worsening symptoms, it gives a vivid description of his progression and determination. It is a scary read in some ways for me, but I know from personal experience that even a bad diagnosis is better than the awful unknown of enduring test after test and doctor after doctor with no idea what is wrong with you or how to treat it.

I hurt for Dan as I read it, but it’s hard for me to put the book down. I want to know more about this man I have come to love and respect via the internet. I think you’ll find that true, as well.

Firefighters with Parkinson’s

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The PD Warrior recently did a post about the high incidence of Fire Fighters with Parkinson’s Disease. Where the occurrence of Parkinson’s Disease among the normal population is something like 3 to 4 per 1,000 people, the incidence among firefighters, according to the information on this blog is that these brave men and women, who are exposed to all sorts of toxic gases and materials during their daily work environment get Parkinson’s at a rate of 30 per 1,000. Ten times the normal number!!! And that’s just for PD. Add to that the number with other types of Neurological Disorders and this is flabbergasting, to say the least, and should receive more attention than it does. In all my reading about PD and other Movement Disorders, I have never noticed any mention of firefighters.

So here’s a plug for a great site (although my brain has trouble with the “firey” style of the blog) that everyone should read!

Firefighters with Parkinson’s.

Turned Down for Long Term Care Insurance

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When my diagnosis was changed from Parkinson’s, which is progressive, to Essential Myoclonus, which is not, we decided to see if we could improve our term life insurance policy rates, and also see if we qualified for Long Term Care insurance. The preliminary review from both looked promising, so we asked our financial adviser to proceed.

Well, the life insurance folks said wait 6 months from the new diagnosis, which seems reasonable.

The lady who handles the LTC accounts seemed optimistic, despite hubby’s cancer history and my neurological history. But she called yesterday to say that they would not insure me. She said it was not the diagnosis, but what the doctors had written that precluded insuring me. Grrrrr!!! Yuck!!! Dradit!!!

I’ve asked her to fax the report from the doctors to me that caused the rejection. Not a happy camper at all about that, and wondering what in the world they said that alarmed the insurance folks. Plus, that doesn’t sound hopeful for reducing my rates on life insurance, either.

We had a wonderful time visiting with our younger daughter on her birthday. She got off work, and we just hung around and enjoyed each other’s company. We took her out to lunch and even went to a few thrift stores – she’s just as addicted as we are! LOL!!

I had done the dumb stunt again this month and forgotten that my Primidone prescription doesn’t run out at the same time I order all the others. So I had to really scrimp and stretch between doses to get back home before I was entirely out. So I asked hubby to see if our pharmacist would sell us 10 extra pills, so it would coincide with the rest of my order. He gave him the pills! Said we were such good customers that it was the least he could do. Granted, these are not expensive pills, but I was still floored!!! I plan to go thank him in person the next time we’re out.

And we sold one of our finds from Monday to a family who had been searching for it for a long time. I recognized it the moment I saw it and couldn’t wait to let them know it had been found.

So as always, I choose to enjoy the happy moments that come, but can still get freaked out by all the changes this disorder has caused in our lives.

Looking for Folks with MSA – an Aggressive form of Parkinson’s

Day by Day with a Movement Disorder Posted on by 2

I have been a member of PatientsLikeMe for some time now, and am convinced that it is one of the best sites for people with all kinds of neurological diseases to join, from those with ALS, MS, to various forms of Parkinson’s Disease. They have split off a new forum for those Parkinson’s members who have been diagnosed with MSA. Multiple System Atrophy is a particularly aggressive form of the Parkinson’s like diseases, with some symptoms that Parkies don’t usually have.

I wrote recently about one of my PLM friends whose diagnosis was recently changed to MSA, and she is blogging about her experience dealing with this devastating change of direction. She’s doing a great job of letting the reader see the physical and emotional trials she is experiencing.

So, I’m calling for all those who have been diagnosed with MSA to take a look at PLM and at least consider joining and participating. And while you’re at it, go give B’Nana an encouraging word. I’m sure she can use it!!

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?

Odd Physical Therapy Today

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I went to PT this morning, and they did start me on some exercises, all for my arms. The first few were fairly easy, but then she had me pushing down with what seemed like more resistance than the others were set for. I stopped at the first set of ten on that one, instead of doing two sets of ten the way I had done all the others.

Then I moved to the pulley rope, which I’ve done before with other therapy, and it’s always fairly easy, unless you just can’t raise your arms. I had no trouble with that at all. Problems came when I stood up from that one, though.

I woke up this morning trembling more than usual, and getting into the cold car this morning just made it worse. And then I did all this new exercising on top of that. I guess everything just worked together to bring major big time tremors in my legs and arms, all at the same time. I was frozen in place, unable to move, because I was just not in control at the moment. The Aide immediately pulled a chair over for me, and I didn’t do any more exercises. They hovered over me for awhile, with me assuring them that I was OK, that it would ease off on its own, that there wasn’t anything they could do, and I really was OK.

After I convinced them that I was not going to fall, they moved me to the room where they do the ultrasound and heat therapy with the TENS machine, and everything went as usual. About half way through all that, the tremors settled down to just the usual quiver in my right arm and leg.

The only thing I can think of is that using the machine that was apparently set with too much resistance for me to handle just used up the dopamine I had available for a little while. It will be interesting to see if I can find anything to agree or disagree with my hypothesis.

It’s been a shaky afternoon, and I just gave in to my chocolate craving – that’s my way to deal with stress, as any chocoholic will tell you. And my neck is sore, but not painful, from the exercise. But at least I’m walking around about like usual – maybe a little shakier, but not much.

She told me I have 3 more visits before I have to see the Orthopedist again, so I need to make that appointment. I should have done it today, but I’m in one of those procrastinating moods today, and I just didn’t feel like doing it. These moods don’t make any sense, but I get into them every once in awhile. Things that happen like this morning seem to bring this apathy on, like everything is just too much trouble. It’s stupid, I know, but it’s just the way I get at times. I’ll snap out of it, just as the shakes finally stopped. Just takes a little time.

Tomorrow is Date Day, and it will be a better day. I’m sure of it!