Grandparenting with Parkinson’s Disease, Part 2

In my last column I shared about grandparenting with Parkinson’s disease. Today I will give you concrete ways to have a blast with your grandkids (or young kids) without losing your mind or your strength because of Parkinson’s.

Children love to bake and cook. Make or find an apron they can get messy and make cookies. This is one activity all my grandchildren have loved doing with me and their grandpa. It will be messy, but what’s more important – a clean kitchen or fresh baked cookies made with your grandchild?

Children love to garden. Have some child-size garden tools available for your little helper. You may as well get the normal size because they’re going to want to use yours anyhow! A hand shovel, a small watering can, and a short rake (the small, plastic leaf rakes for hard to reach places are good child-size rakes) are good for starters. My grandson uses every tool I use, so be ready to teach and supervise.

Kids love art projects. I have a child-size art easel I purchased at IKEA for $15 a few years ago. It is the perfect size and has lasted outside on the deck for over eight years. Use fingerprint paint and then you don’t have to worry about staining clothes. Use the kitchen apron for added protection.

Make the Dollar Store and thrift shops your new best friends. Crayons, silly string, construction paper, sidewalk chalk, and other crafty items await you at a bargain price.

I have gotten small pom-poms and small square foam pieces at the Dollar Store (DS) and they have lasted two years for make-do snowball type wars inside the house8. They’ve become the rocks for the dump truck and more. Total cost: $2.

My grandson loves to play with balls. A bag of balloons are great make-do volleyballs for inside the house. He also loves silly string and surprisingly it’s not a pain to clean up. That, however, is for outside.

Every kid loves sandboxes but so do cats. I put a small, round (about 36” diameter) black plastic pond form I bought at the neighborhood garden shop on the back deck (where the sand stays dry) for a sandbox. Before my grandson goes home, we pile all the outside toys in it and then there’s no room for cats.

I bought a roll of brown grocery type paper at the DS and unrolled it flat onto deck. I took an old cookie tray (you could use throw away foil ones), put different colors of finger paint in it and placed it at one end of the paper and let him put his bare feet in it and decorate the paper. Part of it we framed as a gift for mom and dad and the rest we let mom use for wrapping paper.

Look for other grandmas who watch their grandchildren and meet them at the park one day. The mall playgrounds, indoor play areas, parks and more are good places to meet new friends for the both of you. Malls are also good places to take the little one to walk early in the morning before the crowds begin.

If you’ve got cleaning to do, why not let the kids help? While I cleaned the toilet one day, I gave my grandson a plastic spray bottle with water in it and a sponge and sitting inside of it, he ‘cleaned’ the tub.

There’s so many other things you could do that are easier on you than others, but these are a few suggestions you might try. Also, some things to keep in mind if you know you’re going to have a child over for the day:
– don’t use up your energy today if you know you’ll be watching them tomorrow. They are most important so learn to leave the housework. It will still be there. They may not be, and for sure they won’t stay little very long.
– carry your phone everywhere when they are with you (and when they aren’t) in case you need help. I called my husband last summer to come get us from the park down the street because I knew I wasn’t going to make it home.

Do you have any suggestions on grandparenting with Parkinson’s disease you might share?

Caregivers: We wouldn’t make it without you…

Sitting in the neurologist’s office, my questions usually get answered, my fears often get calmed, my symptoms often are addressed. However, I sometimes wonder how my husband feels sitting there, listening in, adding his two cents worth. How does he feel about what he sees happening to me daily, what he might be missing, how he is coping, or going to cope?

Who asks questions of the caregiver? Where do they go to for support? Is there someone who can put their fears to rest? What should they (the caregiver) expect?

Because I’ve never seen an article address the subject much (although, I’m sure they’re out there), I thought I’d try. Since I am not the caregiver in my situation, I have researched some material to find some answers.

So, caregivers: What could be ahead on this journey with Parkinson’s for you?

You are in for some changes. Your loved one is going to be changing physically, emotionally, and mentally day by day. Because each case differs in how Parkinson’s disease or any chronic illness affects the patient, it is hard to say how much change will occur or how long it might take or last. This could very well cause fear, and understandably so.

You fear your spouse will no longer be that beauty or that hunk you once fell in love with and were attracted to. You no longer have those deep conversations you used to have. Their concentration level just isn’t there, and it’s frustrating you can no longer have talks like you used to under the stars. The cognitive issues that so often accompany Parkinson’s disease can be harder to handle than the physical changes. And so often, it may seem that the disease now outshines the person you once knew.

It’s OK to grieve because what you are experiencing is worth grieving over. Someone doesn’t have to have died to be dealing with grief. I grieved for years over my oldest son moving his family away in hopes of finding a better job so he could provide more for them. No one died, but the grief was (is) real. Your loved one may not be anywhere close to passing, but still, you grieve over the one you are slowly losing to a malicious disease.

When the disease is diagnosed, it can be confusing. A lot of misinformation can be floating around in cyberspace. It is best to get your information from a qualified source and to remember that each person wears PD differently. You may very well face family members and friends who don’t want to believe what is happening, and they will offer no help or support whatsoever. You may feel left alone to fight this battle. You may fear being alone to finish your life, a life that now looks so different from the one you and your loved one had dreamed of.

You may realize that the support just isn’t there. The support you expected or anticipated. Family and friends may stop calling or stopping by. They may not invite you to get-togethers as they once did. They may ignore you.

They just don’t understand. They can’t understand unless they walk the same path, or a very similar one.

It can be a pretty dismal place. But remember: Everybody’s situation is different. Everybody will respond to this disease differently, both as patient and caregiver.

What I wish to convey in this column is this: We couldn’t make it without you. I am sure it’s only going to get harder. And hard is hardly the word to describe a caregiver’s situation as they care for someone with Parkinson’s disease. But you chose, and still choose, to stay through the long haul even though you could have left and gone your own way.

I know of people whose spouse left when they were diagnosed with Parkinson’s disease. But you haven’t. You have chosen to hold tight to the promise you made at the altar or as a loyal friend. And we love you for it. And because we love you, please get some support for yourself. Don’t go this journey alone. Move closer to family if they can’t come to you. You do (and will) need each other.

And we, the needy patient, may get to a point where we can’t say it or show it, but we are so grateful and blessed to have you in our life, and we love you for all that you are: our caregivers.

What are the chances of getting Parkinson’s Disease, sarcastically speaking?

Someone asked me, what are the chances of getting Parkinson’s disease? So, I did some research and came up with the following.

Lighter colored hair. Yes, that’s right. A person with black hair has the best chance of escaping a diagnosis of PD than that of a person with red or blonde hair, red being the greatest chance. I don’t think dyed hair counts.

Family history. Hereditary factors/genetics can play a part. If you have a close relative who has Parkinson’s disease (such as a parent/sibling) your chances increase.

Men tend to be more at risk than women for unknown reasons. However, this fact can also depend on what country you live in.

If you are over the age of sixty, the likelihood of developing PD is greater. However, there is a very rare known case of PD starting at the age of two.

The Amish community seems to have the highest rate of PD among any other communities. It is thought that the culprit may be all the pesticides used in their farming. Which leads to… Exposure to toxins playing a large part in some PD cases as well as those individuals who relied on well water for drinking and cooking. This is due to the chemicals/pesticides found in the water. It is said that Nebraska has the highest rate of PD in the United States, most likely due to the pesticides used in their farming, as well.

Trauma to the head may play a role as damage is done to the dopamine producing neurons in the brain. If you were one to bang your head against the wall in frustration, well… you shouldn’t have.

Manganese, a known cause of Parkinson’s if the concentrations are high enough, is found in a town in Italy. The concentrations there are high enough and approximately 410 out of 100,000 people have been diagnosed with PD.

Ethnicity has been studied, showing Caucasians have a great chance over African Americans.

Illicit drug use may be a factor as the drugs have a bulls-eye target for the, again, dopamine producing neurons inside the brain.

Various studies have shown that PD is much more prevalent amongst welders, significantly higher amongst physicians, dentists, teachers, lawyers, scientists, computer programmers (young onset PD diagnosis greater for this group), clerical occupations, agricultural workers, hunting and forestry occupations were also positively associated with Parkinson’s Disease. Those people involved in manufacturing and transportation were less likely to get Parkinson’s Disease.

So… what does this all mean? Here it is:

If you are a welder, physician, dentist, teacher, lawyer, scientist, computer programmer, person involved in clerical work, agricultural worker, hunting and forestry vocation person, and… have a family history of PD, are male, are over 60, Amish and are growing manganese plants as a hobby; if you are Caucasian, take illicit drugs, banged your head against a wall, live in Nebraska, have red hair and a family history of PD, then chances are – you MIGHT get PD. Then again, it depends on which country you live in, too.

Another interesting tidbit? Those involved in the manufacturing and transportation fields were less likely to get PD. Caffeine and smoking are said to help prevent PD.

I wouldn’t quit my welding job to pilot a jet, leave the Amish community, or move from Nebraska and take up smoking. There are reasons, yes, why people get PD, even if we haven’t really pinpointed the specific culprit yet. However, ultimately, because of God’s sovereignty, things are going to play out as He sees fit, whether we have black hair or polka dot hair, work in the forest or teach geometry, are male or female, Amish or Mennonite, prefer chocolate over strawberry ice cream. And, if He sees fit to give us this disease, well then, He’s got to have a pretty good reason that we may never know or understand. So, if you fit this category – just a normal person with Parkinson’s disease – don’t give up. We’re all in this together and it doesn’t matter who you are, where you live, what you do or if you prefer strawberry or chocolate – we will get through. However, might I say? Chocolate really is better, no matter what.