What Kind of day will I have?

I have been sitting by my computer wondering

 what kind of a day I will have.

Of course I will meditate, 

waiting for my medicine to kick in,

 and then my exercises will begin.

I think about how wonderful life is. 

I have been watching the birds in the large tree across the pond. 

I saw a humming bird getting nectar from my red flowery hibiscus.

How wonderful the gentleness of nature,

Suddenly my heart races as I see,

An eagle taking flight

as the rabbit flees,

and is no where in sight.

The eagle passes and flies away.

I am sure he will come back another day.

As humans, we fear the unknown more than anything.

Playing pity me could be tempting,

but that is not me, to put it simply.

Enjoying time spent with others,

talking and laughing like sisters and brothers.

This is what life is all about 

Sometimes, I just want to shout it out.

  

Can you Smell?

I haven't been able to smell for a long time. While it could be to my advantage, but it is and can be a problem. Food doesn't taste the same.  Once in a great while, I smell something that has an odor, but I can not tell what it is. At times I crave some food but when I get it,  it does not taste as good as I remember it. I wrote in the past about my iron burning and my service dog warned me, since the burning started in the inside of the iron, before the flames and smoke showed. God was watching over me that day.

This is just a part of my Parkinson's disease. It is something that I have adjusted to. Not everyone with Parkinson's disease has the problem of not being able to smell.

Why am I losing my sense of smell?

Little is confirmed about what causes the early, pre-motor symptoms of Parkinson’s, such as hyposmia, this loss of smell. But one prevalent theory in Parkinson's research about disease progression has to do with the protein alpha-synuclein, whose clumping is found in all people with the disease.

This theory, based on the research of Heiko Braak, MD suggests that the disease may start not in the substantia nigra (the region of the brain where loss of nerve cells leads to the dopamine deficit experienced by people with PD) but in the gastrointestinal system and the olfactory bulb, the part of the brain that controls sense of smell. Researchers have hypothesized that the alpha-synuclein clumps found in all people with Parkinson's may form in these parts of the body first, before migrating to other parts of the brain. Should this turn out to be true, and if researchers can find the clumps and break them up before they reach the brain, it may become possible to treat Parkinson's before major neurological damage occurs.

The Patient and The Caregiver

The Patient:

When feeling good or bad, it makes things seem better when someone shows they care.
Just by touching, no words need to be said. It is a wonderful feeling.I know that if I am really having a hard day, my husband will come up to me while I am resting and touch my hand lightly just to show me how much he cares. It is such a loving feeling, after all these years of marriage.

I know no one wants this disease. It is just as hard mentally on our spouses and family members as it is on the person that has it.  It can also be hard on your caregiver physically.

Sometimes we get caught up in ourselves, we forget to tell others how much they are appreciated.

Remember to show your caregiver how thankful you are.  This could be a hug, a smile, or simple words to say thank you.


The Caregiver:

Support and Resources for Caregivers

As a caregiver it is sometimes difficult to let others help out or to take time out for yourself too.  However, the benefits of such choices often bring valuable results for both yourself and the person with Parkinson's.  Benefits can include revitalized energy, renewed interest in creative endeavors, new subjects to talk about and the realization that you and the person you are caring for are not alone.

Support Groups

For many people, support groups play an important role in the emotional well-being of both caregivers and people with Parkinson’s. Some groups are targeted towards caregivers, while others can provide a place to talk to people with similar experiences.

They can provide a caring environment for asking questions about Parkinson's, for sharing stories and advice, and for creating friendships with people who are in similar situations. 

PDF keeps a listing of nationwide Parkinson's support groups. To find one in your area, please call or email PDF at (800) 457-6676 or info@pdf.org. In addition to in-person support groups, many people also find online groups and listservs helpful.

Time to Yourself

For those who have family in the area, friends and family are often willing to help, but are unaware of your needs. With their help you can find time to yourself.   Consider making a list of things that others can do that may help you.  These may include things such as asking a friend or family member to stay for two to three hours with the person with Parkinson's while you go to the a store, or a movie, etc.  Perhaps request a family member to assist with tasks such as housecleaning or food preparation to give you free time or time away.   It may be difficult to get used to asking for help or even hiring help.  But remember that since caregiving is a role you are in and undoubtedly wish to do well, you will need to care for yourself in order to offer the most you can.

Helpful sites: 

 A Family Caregiver’s Guide to Care Coordination 

http://www.nextstepincare.org/uploads/File/Guides/Care_Coordination/Care_Coordination.pdf

My Wonderful Neurologists!

We call her Dr. Z

This is my Movement Specialist, Dr. Theresa  Zesiewicz M.D. (USF- Tampa) I have been her patient since being diagnosed by her in 2004.

She is a Neurologist that specializes in movement disorders. Theresa A. Zesiewicz, M.D., F.A.A.N
Professor, Department of Neurology
Director, USF Ataxia Research Center (USF ARC)
Director of Clinical Research, Parkinson's Research Foundation
Founding Director, USF Ataxia Research Center

I am so thankful for her. Her mother had Parkinson's disease. She is well versed not just as a doctor specializing in movement disorders, but has lived it.

My local Neurologist is Dr. John Campbell. His practice  is  Collier Neurological Specialists in Naples, Florida. It is about a 40 minute drive for me. He is my Parkinson's and Stroke Doctor.

My Neurologist for Dystonia is with the Collier Neurological Specialist is Dr. Maria Santiago. In the same practice as Dr. Campbell.

God has truly blessed me with all three Board Certified Neurologists. They are so caring and understanding.

As of this time, I do not have pictures of Dr. Campbell and Dr. Santiago.

We don't stop playing because we grow old

We don't stop playing because we grow old; we grow old because we stop playing.
- George Bernard Shaw

I read this quite often to help me overcome my rigidness. I know in order to fight this battle with Parkinson's progressing in my body, I do all that I can to overcome it each day. 
If you watch a child that is handicap, how they manage to do things without help, they do it.

I in turn, try everything  as well. I truly believe in exercise, whether you are wheelchair bound or you can stand, there is always  exercises to do.
If you have problems with balance then stand behind a chair holding onto it.

 Exercising your mind, by reading, working on puzzles, and word games. 

If you are having your voice get softer as the day goes, place your hand on the lower part of your body and feel it when you  yell ~ H E L L O . Try this several times.
Singing is helpful, try Karaoke.

Taking up a hobby like painting, playing cards or anything you would like to do is important to make you feel good about yourself.

The bottom line is enjoy Life the best way that you can for you.

You only go around once,  so give yourself a hug and remember to smile.

Dance

Yesterday evening, we went to dinner and dancing at the golf club.

 I have Parkinson's Disease and have had it  for many years now. 

I walk using a cane and if it is for a length of time, I use a powered wheel chair. 

Quite often, I loose my balance and fall.

If we are out and I hear music and feel the beat ~ I can dance. 

Sounds crazy but it is true.

At times I fall while dancing,  but last night I was able to dance without falling.

I have seen on the internet, quite a few people who have a difficult time walking with Parkinson's disease can dance without falling

I guess it is like Michael J. Fox on ice skates playing hockey without a problem.

I am sure some people will say, that is impossible! 

I don't know why, but as long as I can dance, 

I am just happy, without understanding why.

Dancing is a wonderful exercise, for everyone. So, put a smile on your face , turn the music on and start dancing.

Dec. 13, 2008 in Dance, dance education, dance-life balance, dancing, NYC

Today’s All Things Considered on NPR had a wonderful story by Jacki Lyden on Parkinson’s and dance. Each week, the Mark Morris dance company holds a class for people suffering from Parkinson’s disease.

One thing that I learned from the story is that Parkinson’s affects one’s ability to initiate voluntary movement; while involuntary movement is largely unaffected. For example, you would be able to catch a ball because it is a reflexive action, but you might not be able to initiate the movement of your arm to throw it back.

Mark Morris thinks that dance tricks the mind and body into moving, as the repetitive movements in dance can eventually become involuntary, as are one’s mindless reactions to the beat of a familiar song, or copying the movement of an instructor or classmate. Although there is not any definitive scientific research yet to link dance to improvement in Parkinson’s symptoms, the anecdotal results of the class are so strong that Mark Morris was invited to speak at a neuroscientists’ convention.

I'm Not Clumbsy

With parkinson's disease, sometimes we loose our balance, we look like we are clumsy, or drunk.

There are times, we freeze and unable to move, or we shuffle when walking. Some people quickly turn away, not wanting to stare. 

I have been in a public place and have lost my balance and have fallen. For me, I feel more embarrassed than anything. I am thankful that I haven't broken my hip or anything else.

Falling does hurt. We aren't as limber as we once were. 

If we go to a restaurant and we are there for a while, I have are hard time getting up, especially if we are in a booth. My husband has to help me rise from my sitting position. People look as if to say, she was able to sit down by herself, why can't she get up by herself.

There have been times, I begin to choke and my husband taps on my back and I am ok. I am fortunate that I have been able to swallow when he does that.
He also knows CPR and what to do if needed.

Sometimes, I want to wear a sign. I have Parkinson's Disease ~ I  am not drunk, I am not faking what is wrong with me. I am doing the best that I can.

When shopping in a mall, I have had people come up and ask me to smell the latest perfume ~ I have to say, no thank you ~ because I can not smell.

I have been places and I walk too slow using my cane. People are behind me and all of a sudden pass by real fast, which has caused me to jump. Some have been rude and laugh, while others just continue walking fast.

I have had dental problems, because of dry mouth.
I have had eye problems because of dry eyes.

I can go on and on, but you know what. I am blessed.
I may not be able to walk that good, or do some of the other things,
but I can dance.

Life has it's Ups and Downs and so far I have more Ups than Downs.