Grandparenting with Parkinson’s Disease

You’re going to be blessed with your first grandchild. The news brings joy to your heart and puts a spring in your step. Until you begin to re-evaluate… You have Parkinson’s disease. Will you prove to be of no use? Will you be a burden? A bother? Just in the way or somewhat of an asset? Can you be a help to your children on their new adventure – your grand, new adventure? What can you expect?

I became ‘Grammy’ when my first grandchild, a beautiful little girl, was born. It was four years after I was diagnosed with Parkinson’s disease.

I was in a fairly good place physically. I was slower, but still capable of walking on my own and getting around. I was losing upper body strength but I began watching my granddaughter every day when she was six months old. Babies are born small and grow into big people not vice versa. So, while I watched my granddaughter and she grew, I noticed I was growing stronger in my upper body. My granddaughter had become my ‘home gym’.

I now have three grandchildren, the youngest a three year old who I watch every day. There are days, because of my health, when my grandson and I take “our” activities at a slower pace. There are days when I need a little extra time. That’s one blessing of being around smaller children. Everything fascinates them. They stop to notice things instead of hurrying by with an eagerness to get to their destination at a record pace. And, children bring a joy into our lives that nothing else can compare to, therefore, they are good in uplifting out souls and our spirits.

Now, let me say that my husband is unemployed, which has been a serious hardship on his desire to support his family financially. But often I look out the window and with tears silently filling my eyes, I give a prayer of thanksgiving for what God has done. He (God) knew my heart would yearn to watch my grandkids – all of them – if their parents needed to work. He (God) also knew, that in my present condition with Parkinson’s disease, I wouldn’t be able to do it day in and day out alone. He has given me my husband as my caregiver and he is an exceptional caregiver to me and helps tremendously in the care of his little grandson.

I have had to learn to make some changes, though, in order to be able to watch my grandkids. I have had to

  • let go of my pride
  • let others help me
  • recognize every single need has been filled month in and month out
  • let go of my OCD personality and let things wait until I have time to clean them or until I have the energy to do it.
  • realize some things are no longer as important as they once were – like housework.

What might you, as a grandparent with Parkinson’s disease, be able to do with your grandchildren? For those who are still able to get around independently, you know from having your own children that they love to go on walks and ‘explore’. Walking is one good exercise for grandparents with Parkinson’s disease. Play games with your grandchild as you walk, like “I spy…”, or pretending to fly, looking for ladybugs, naming colors of flowers and learning different flower types are all fun ways to spend a sunny day outside and they are easy on grandma and grandpa. On rainy days, you’ll find us jumping in puddles. (Make sure to keep a spare pair of rubber boots and rain coat at your house. Thrift stores are good places to look for spare rainwear.)

Check back in a couple days where in my next post I’ll give you some concrete ways to have fun with your little ones without losing your mind or your strength!

What Every Person with Parkinson’s Needs to Know

A while ago, I received a note from a gentleman who had just lost his father-in-law to negligence within the medical community. “Negligence” is my opinion, but with the information I was given, I believe that’s what it comes down to.

Before a person goes in for any type of surgery, it has been my experience that the medical staff involved has a decent understanding of the patient’s medical history, including possible treatment allergies. Yet, not all medical personnel are up to date on how a certain therapy will affect someone with a certain disease. And medical staff can’t know every treatment’s interactions or negative effects associated with a certain disease.

Several months ago, I wrote a blog post about Haldol and how anyone with Parkinson’s disease should steer clear of it, as it can be life-threatening to a Parkinson’s patient. I’d like to share one man’s story with you (with his permission) that he communicated to me.

“My father in law lived by himself and was doing fine, alone with PD. He passed away 5/10/10 after entering the hospital 4/28/10, after he tripped going out to his car, to make the 2 hour drive to come and see me, his son in law and his daughter (my wife) and our children.

“A simple 45 minute hip surgery had taken place 4/29/10. They kept covering him with blankets and he always complained he was hot from the shaking, so he would take the blankets off, so they started giving him HALDOL. Why, I don’t know. A day later he was in ICU for 4 days on complete life support. He somehow managed to snap back from ICU and make it back to a regular room, after we found out what Haldol was and told them to stop giving it to him. Even their pharmacist at that point said ‘Yeah, don’t give him Haldol.’ He still had to be on a respirator. I guess the Haldol in pill form was aspirating him also.

“A few days later he died. They said the cause of death was advanced PD. How does someone with advanced PD live on their own, sharp as a tack (this man launched rockets for Nasa and designed aircraft for Boeing, could drive a car fine, talked fine on the phone), but after the Haldol, he became a vegetable and mumbled and didn’t know who anyone was? At least I was there when he died. I am sure glad my wife did not have to see her father dead as she was there with him through the whole thing but had went home for a few hours to rest. His name was John and he is probably the finest, most caring, loving man I will ever have the pleasure of knowing. He was involved in the MJF foundation, as well donating money to help others like him with PD. Thanks for letting me share his story…

“It was your post here that alerted me when my wife phoned from the hospital and asked me to find out what Haldol was. She could not understand the state John was in from a simple 45 minute surgery so she inquired as to what they were giving him.

“I have now been doing my homework. This is what we experienced with John and it amazed me how he could one day be perfectly fine (minus some shaking that his meds controlled fairly well) one day to be basically out of his mind the next day.

“I searched ‘Can PD kill you’ and found this: ‘Just as there is dementia in Alzheimer’s, so there can be in Parkinson’s. This is not a pretty dementia, it is frightening to comprehend. Another problem is that in PD it is coupled with a myriad of other neuromotor problems including possible loss of intellectual capabilities. While this is not death it can be a form of living death for the patient and for the family.’”

If you’re having a procedure done — any procedure — take someone with you. Someone who can speak for you if you’re not able to. Make sure the medical personnel know your allergies, and any other vital information like, “I have Parkinson’s disease and cannot take Haldol!” Get a medical ID bracelet with your medical information on it and/or carry a PD card. As best you can, be proactive in your care. Your life may literally depend on it.

Getting Help When Filing for SSDI for Parkinson’s Patients

For over three years now, Ram Meyyappan has been a writer and an editor for Social Security Disability Help (www.disability-benefits-help.org). She contacted me regarding doing a guest blog post on Parkinson’s Journey on getting help when filing for disability for Parkinson’s patients.

This is her very informative and helpful article for those seeking to hopefully, speed up what can often be a very long, frustrating, and discouraging process in the PD community – filing for disability. I hope you find it helpful and / or can pass it along to others who may be in need of direction in their attempts at filing for disability through the Social Security system.

Journeying with you – sherri

Applying for Social Security Disability Benefits Due to Parkinson’s disease
As you likely know, if you have firsthand experience with this condition, people with Parkinson’s disease face worsening symptoms such as muscle stiffness, tremors, and trouble with motor skills. As these symptoms become more severe over time, it will become increasingly difficult, or impossible, for this person to maintain a job. Not only do people living with Parkinson’s often struggle to pay for day-to-day expenses, but they also have to worry about costly medical expenses. This is when having Social Security disability benefits become a major source of relief.

Qualifying for Social Security Benefits With Parkinson’s
Parkinson’s is a special case when it comes to Social Security claims because there is no definitive test or lab report that will prove a Parkinson’s diagnosis. What you can provide is a detailed report provided by your physician – perhaps a neurologist – that demonstrates any physical evidence of your condition, as well as the severity of the symptoms you are facing.

A diagnosis of Parkinson’s disease is typically reached once a physician finds evidence that you are showing signs of at least two of the cardinal symptoms, which includebradykinesia (which refers to slowness of movements), muscle rigidity, and tremors. When determining if someone is eligible for Social Security benefits, the Social Security Administration (SSA) looks for evidence that these symptoms impede significantly on an individual’s ability to complete typical workplace tasks.

People who live with Parkinson’s disease are generally approved for assistance if they are able to provide strong evidence that the condition has significantly made it difficult to stand, lift, walk, or even sit for an extended period of time. A strong Social Security Disability application will typically include documentation provided by medical professionals that show that the applicant is experiencing ongoing and debilitating symptoms in at least two extremities, even though they are undergoing prescribed treatments.

The SSA Blue Book, when listing eligibility requirements, does not specifically address the many emotional and cognitive issues that people experiencing the later stages of Parkinson’s can often experience. However, if these symptoms are making it difficult for someone to understand and follow directions when working, they can be used as evidence in the application process.

Understanding The Difference Between SSI and SSDI
There are two different Social Security Disability Programs for which you can apply: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).The primary difference between SSDI and SSI is that SSDI benefits are accessible to people that are too disabled to work, and who have paid into the system through payroll taxes, and have accumulated enough work credits. SSI benefits are available to people who are disabled, or over 65 years old, but who have a very limited income and who have not accumulated enough work credits to receive SSD assistance. SSI benefits are strictly needs based, and the amount received will depend upon income and the state where the applicant resides.

You can learn more about the two disability programs here:http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/245/~/difference-between-social-security-disability-and-ssi-disability

What to Expect from the Social Security Disability Application Process
It is important to realize that the SSD application process can be quite lengthy. Most people with Parkinson’s disease, who apply, are often denied assistance initially, but a substantial number are then approved for benefits after an appeals and hearing process.

If you, or a loved one, have been diagnosed with Parkinson’s, it is never to soon to begin investigating the SSD application process, as you could be waiting over a year to begin receiving badly needed financial assistance. To improve the chances that you will be granted approval for Social Security disability benefits as soon as possible, it is recommended that you seek legal guidance during the complex application and appealing procedures.

Article by Ram Meyyappan
www.disability-benefits-help.org
Ram Meyyappan
Social Security Disability Help
ram@ssd-help.org