APS comes a knocking...

Our meeting this month should be interesting, inasmuch as Adult Protective Services will be there to learn about Parkinson's firsthand from a Movement Disorder Specialist and to see the various manifestations of Parkinson's Disease.  The problem is that many folks have no frame of reference to understand that PD is different for every individual.  Michael J. Fox is just one manifestation of many.  You and I each have our own distinct issues.

Why in the world would we have two such esteemed interests at our meeting?  Well, the neurologist was already scheduled.  Then, we experienced Adult Protective Services visiting yet another of our Parkie families.  Because falling can be a prominent feature of PD, and injuries can occur with those falls, someone placed a call and voila!  APS knocked on the door.

What kind of leaders would my wife and I be if we didn't call APS ourselves?  So, we did just that.  After a very lengthy conversation with an APS worker (a big thanks to our local gal for staying on the phone to learn more about PD), the worker said she would definitely attend, and invite all available social workers to do the same.  You see, Michael J. Fox is not in our membership, and none of our members manifest their symptoms as he does.  We think she and her peers will be surprised to see how normal we all look, but still have disabilities that can cause us harm if we aren't careful.

I guess the point of this missive is that if it looks like a duck, and quacks like a duck, it might just be Parkinson's.  We can fall, injure ourselves, and look like someone smacked us around a bit, because maybe, just maybe, we didn't get our hands out in front of us before taking a bite out of the concrete with our face.  Things happen a bit too fast, frequently, for us to catch ourselves.  But with a little help from our caregivers, and a little understanding from APS, we can educate others as to what is really going on.  I can't wait for tomorrow's meeting to see how it all shakes out.  (Pun intended.)

Mindfulness

 Mindfulness and communication ~ I woke up this morning feeling just really good for a change and told Susan that this was a good day.  I do that every day, or at least give her an indication of how things are going for me, so she can plan her day and we can evaluate our plans efficacy.  Some days I just wake up and can't do the things that I wanted to do and make her aware of it as early as possible, so it doesn't ruin her day for her and she can make alternative plans.

We are finding that it is more important as time goes on to be communicative of our limitations.  That goes for her as well.  Somedays, when it is smokey, as it is today, Susan isn't able to be outside with her allergy to smoke.  As my Parkinson's progresses, I find it is more important every day to communicate the limitations to her, as it would be to any caregiver, to allow them to get a mindset for that day.  As we all know, every day is a brand new challenge.

The aggravation and frustration level is reduced with good communication.  To think that your plans are going forward as you had perceived them and had then in your mind and find out that it is impossible to complete them five minutes before you are ready to leave is not fair to your caregiver and does NOT improve their disposition.  It is always best to have a back up plan every day.

Thoughtfulness, mindfulness and recognizing the needs of your caregiver, as well as your own abilities, will maintain a healthy communicative relationship.  Of course, this is all my perception.

Management Issues

The Press-Enterprise today had a quote by Christopher Reeve, "Once you choose hope, anything's possible."  It made me think of a conversation my wife recently had with Derrick, an acquaintance.  In fact, he was a co-worker of hers from twenty years ago.  Out of the blue he contacted us and during the telephone discussion with him from his East Coast home, he happened to mention that he was diagnosed with Lupus more than ten years ago.  We didn't have a great deal of information on Lupus, but find that it is an auto-immune disease that can be very painful and restricts activities and energy levels, much like Parkinson's Disease, albeit a different causation.

He discussed how he has to modify his daily activities based on how he feels any given day.  Weather, he said, plays a huge part in how the illness affects him.  I thought, Boy, his Lupus is not unlike Parkinson's.  I find that colder temperatures make my tremors worse, and heat can affect the length of time my PD meds are effective.  Some days you wake up and feel much better than others.  So you modify your day's activities to the extent of your abilities.  I thought, you know, there are a lot of diseases out there like Parkinson's that have huge impacts on the lives of the individual.

Derrick also made the comment that he has to manage his life around his Lupus, a comment that we have heard and have been making to others with regard to Parkinson's.  I wake up every morning to test the new waters of the new day and work to the very extent of my abilities for that given day.  Making people aware of the daily limitations and gaining understanding and acceptance by those caregivers, family members, friend, and co-workers, goes a long way towards making your life more fulfilling.  So for me, and for Derrick, we will move forward, testing the waters, but always, every single day, moving forward and managing our separate diseases.  And like Christopher Reeve, hope is always on the horizon.

Sugars and tremors

I've just been thinking about the last week and realized that my tremors have increased significantly in both my left arm and left leg.  I usually don't have tremors at all at night, but have been awakened with considerable movement in both my arm and leg for the last several nights.  I have reviewed my medication schedule and have realized I have been less than exact in taking my pills.  I am trying, today, to get back on schedule and right now, as I am writing this, I have taken my meds on schedule, but am finding the tremors have remained pretty strong all day.

I am going to attempt to maintain the schedule for the next week and see if they abate with regular medication or if I have to change my medication schedule.  One of my dear friends has mentioned to my wife that her husband's tremors increase significantly with the intake of sugars, including regular or diet sodas.  Although I don't drink sodas at all, I do love the taste of chocolate and anything sweet.  My intention is to moderate the intake of the sweets to see if that has any impact on the tremors.  I'll let you know the outcome of this experiment in a couple of weeks.  If nothing else, talking about it reminds me to stay off the sugar.

This is not the best time to start this program, what with the holidays being here, and all the neighbors and friends bringing candies, cookies, sweet breads, and chocolate, but in an effort to remain true to my comments, I will cut back significantly on their intake.  Then again, maybe I'll have to delay the experiment until after the holidays . . . .

The Sweats

Is the inability to control your body temperature a part of Parkinson's?  I don't know, but I have recently been experiencing some very warm nights, even though the temperature is fairly cool.  I find myself waking at 1 or 2 in the morning drenched in sweat.  This is something that is fairly new to me and I was just curious if there are other people having the same issue.

I can't really remember any comments to the effect that this was a Parkinson's symptom . . .  I should know better.  Smarty pants next to me produces a document that gives me a great deal of information on sweating and Parkinson's, directly from her favorite book, "100 Questions and Answers About Parkinson's Disease," written by Dr. Abraham Lieberman.  Although I am sure I have heard some of this before, I could not for the life of me recall hearing it.

The last few nights have been considerably worse than in the past and I can't really define any reason for the change.  Susan seems to believe that it is the down comforter that we replaced two quilts with that is retaining the heat and is just too much for my system.  Tonight we will use one quilt, after removing the down comforter at 2 a.m. this morning and replacing it with a single quilt.  Of course, that meant changing the sheets, etc., at 2 a.m., always a delight for a caregiver.

The take away from the article in the Lieberman book is that Parkinson's patients often lose more moisture from their bodies than they are aware of and must be constantly vigilant to replace not only the water, but the salt, that is leeched from their bodies during their sweat bout.

The Holidays Are Coming!!

Holidays are here and it is always nice to receive a thoughtful present from a loved one.  It is very difficult for a Parkinson's person with a caregiver always at his side to find that special present for a loved one without their being aware of what you are getting them.  So where is the surprise there?
Being tactfully duplicit with an adult child may be the answer, or in some cases, grandchildren are old enough to provide the service.  So careful planning is the answer to the equation.

Holidays are a stressful time, and these minor little difficulties put additional stress on us and the unrelenting PD doesn't ease up for the sake of the holiday season.  To get around all this, early planning seems to be the answer for me.  My caregiver/wife provides so many services for me throughout the year that it is very difficult not to want to give her the world on Christmas Day.  But we find that when we look at each other, we don't need much.  We have the essentials and we have each other.  Anything else is gravy, as they say.

My hopes and wishes for this holiday season are to find all my Parkinson's friends and caregivers having a wonderful holiday season surrounded by their family and friends.

Are you getting any? Sleep, that is.

So many Parkies, including myself, have a difficult time either getting to sleep or staying asleep.  Some neurologists will prescribe yet another medication, a sleeping aid, to help us with this problem.  I didn't care for the feeling I had the next morning, so decided to find some foods that will help with sleeping.  Remember as a kid when our parents would make warm milk for us?  Guess what?  It really does help!   Caring.com alleges that the following foods can help promote sleep.

1. Cherries. One of the only natural food sources of melatonin, the chemical controlling our internal clock to regulate sleep, these can be eaten in fresh or dried form.  Try these an hour before bed.  
2. Bananas are a good source of potassium and magnesium, natural muscle relaxants.  They also contain the amino acid L-tryptophan, which gets converted to 5-HTP in the brain, which is then converted to serotonin (a relaxing neurotransmitter) and melatonin.
3. Toast. Carbohydrate-rich foods trigger insulin production, which induces sleep by speeding up the release of tryptophan and serotonin, two brain chemicals that relax you and send you to sleep.
4. Oatmeal. Like toast, a bowl of oatmeal triggers a rise in blood sugar, which in turn triggers insulin production and the release of sleep-inducing brain chemicals. Oats are also rich in melatonin, which many people take as a sleep aid.
5. Warm milk. Like bananas, milk contains the amino acid L-tryptophan, which turns to 5-HTP and releases relaxing serotonin. It's also high in calcium, which promotes sleep.

Something they did not mention was SleepyTime Tea.  I like to have a cup of hot SleepyTime tea about an hour and a half before heading to bed.  Between that and putting down the computer, IPad, cell phone, etc., also helps to slow down the stimulus to the brain.  Setting the same bed time each night also helps put your body into the proper rhythm.  If there is any way for us to release melatonin into the body, we could sure use it.  How is your sleep pattern going for you?