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My Journey as a Caregiver Since My Husband Was Diagnosed With Parkinson's Disease

Updated on March 26, 2019
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I'm not an expert, but I am living it. Let me share with you this journey, in case you or someone you love is living this challenge too.

Sometimes it feels like I'm caring for a little boy instead of my husband...

Roller-Coaster Ride of Diagnoses

THE FIRST SIGNS THAT MY HUSBAND HAD PARKINSON'S

In 2012, my husband of 8 years became more noticeably impatient and easily agitated. In the years I had known him, this was often true, but I noticed a greater frustration flash in him more often. He was 60 years old at the time. One evening, he was actually in a shouting match with my sister who had been living with us for a year, when I noticed something new. His right hand began trembling. It seemed to twist and turn quickly in the shape of a figure eight, but the shaking would sort of stop when he focused to push a button. From that moment on, I knew something wasn't quite right.

Over the next few years, I watched my husband appear to age more than a decade. His appearance grew older, but he was more and more like a little child -- needing love, support, comfort, and caring. At first the symptoms were few and far between, and the tremors weren't that bad... only when he over-exerted himself or was overly tired. Then his short-term memory began to be affected. I found myself constantly looking for things he had misplaced.

In the beginning, I didn't connect what was happening with his illness. I simply tried to find ways to remain cheerful and not take things he said personally. (Easier said than done!) As the years went by and the symptoms continued to increase, this became more and more difficult.

His hand began to shake more often. His tastes started to change; his favorite foods didn't taste good to him any longer. He began having trouble sleeping through the night. Amazon packages started to arrive daily. And, I noticed a profound depression settling in on my sweetheart. We decided to talk to our family doctor who sent us to a neurologist.

This neurologist spent several months performing tests and assessments and felt that my husband had Parkinson's Disease, but wasn't sure. Our first reaction was panic. My husband is a VERY TALENTED pianist. I prayed with all the energy of my heart that he would continue to be able to play the piano. This has been a blessing that has continued, but it takes a lot out of him to do so.

My husband also is a certified project manager and computer software architect. It's sometimes scary for him when he suddenly cannot remember his computer logic. We don't know how much longer he will be able to continue doing the things he loves.

So, back to the beginning...

Source

MY HUSBAND WAS DIAGNOSED WITH PARKINSON'S DISEASE

We moved and our insurance changed, so we didn't see that specialist again... we simply dealt with the growing symptoms. I noticed that my husband began to shuffle his feet and that he didn't swing one of his arms when he walked.

He began to experience numbness in his feet. The neuropathy began to rise up his legs, which meant sometimes there was sharp pain, and other times, varying degrees of numbness. He began to stub his toes, step on things, and I began the task of checking his feet every night.

MY HUSBAND WAS DIAGNOSED WITH MULTIPLE SYSTEM ATROPHY (MSA)

We went to see another neurologist who said that he wasn't convinced my husband had Parkinson's Disease. After several months of testing, we were frankly told that my husband had Multiple System Atrophy, a terminal disease in which patience don't typically live longer than 5 years after the onset of symptoms. (My husband had been having symptoms for 3 years at this time.)

We told our children the news and made plans to visit the Mayo Clinic for a second opinion. After a 4-month wait to get in, we traveled to spend a week of testing with the cutting-edge specialists that come with a price tag to match.

Diagnosing MSA and Parkinson's is not definitive without an autopsy. But, the Mayo Clinic had a special sweat test that led our neurologist there to believe that my husband did NOT have Multiple System Atrophy after all! We were invited to come back another time to have more testing to see if it were truly Parkinson's Disease or something else. All they could say is it's not MSA, but they didn't know what it was for certain. The neurologist changed our list of medications, exclaiming that one of them was a really bad one that should never have been prescribed.

We didn't know how to feel about that. Part of us was relieved that he didn't have a terminal illness, but the other part felt very unsettled at not knowing what has been going on and what to prepare for.

What Would You Do?

If You Were Given Three Years to Live, What Would You Do Differently?

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MY HUSBAND IS DIAGNOSED WITH "PARKINSONISM"

While waiting to get in to see a Movement Disorder Specialist at University of Utah, we visited another neurologist who is supposed to be an experienced with Parkinson's Disease. This doctor didn't seem to be any real help at all. It felt like so many of these doctors were "practicing" medicine on my husband's life! We lived an hour and 30 minutes away from her office, so I felt we had wasted our time and money to see her. However, she did address some of my husband's Sleep Apnea issues, for which I am grateful.

We finally were able to see the neurologist at University of Utah who began calling my husband's condition "Parkinsonism" since it didn't follow all of the most common patterns. Then, he promptly made changes to our prescription list, ordered some tests and said we should make another appointment for 6 months.

DAILY DEALING WITH NEW SYMPTOMS OF PARKINSON'S

It's been quite a roller-coaster ride through diagnoses until finally reaching a diagnosis of "Parkinsonism." What does our future look like? That's a good question. All we can do is plan each day as though nothing is wrong, then be flexible when my husband has an off period.

We've traveled to "bucket list" places and try to just be careful not to plan anything on a day following exertion. We also remain aware that mornings are usually better than evenings.

I am very protective of my husband's public embarrassment. One of his new symptoms at accompanies his waves of weakness and crying is a jerking spell where his legs and shoulders jerk violently for 20 minutes to 2 1/2 hrs. His sleeplessness and anxiety attacks are part of our new normal.

When guests are at our house, or we are with family, I sense the signs and he either excuses himself, or I distract attention away so he can take care of it. We have an emergency button he can push that will call my phone if I am not with him. I come running to comfort him, and I try to never be very far away... ever.

I keep a running journal of his "waves" of emotion and jerking attacks. There is rarely a day that isn't littered with challenges. Sometimes the depression comes back and makes it difficult for both of us. All we can do is take everything one day at a time. When he snaps at me I must remember that it's his illness... it's not him. I have to just keep helping him through tough moments, keep his medications managed, help him find things, and help him have opportunities to do everything he is capable of for as long as possible. I also end up doing all of the things around our farm and house so he doesn't have to exert himself. It's emotionally and physically exhausting at times.

I created a calendar that shows my husband what day and date each day is. I also publish annual photo books of memories called Year at a Glance. We look at these often and he sometimes cannot remember any details. One Christmas we had spent a lovely week with family, but the following week he didn't remember any of it. This made us very sad. The important thing is to make every day count, and to record as many happy memories as possible.

WHAT ARE OUR NEXT STEPS IN DEALING WITH PARKINSONISM?

What are our next steps? We've looked into alternative methods and have had no success. Some of these are herbal remedies, energy healing, zoning, nutritional methods, acupuncture, etc.

All we can do is keep on keeping on. Breathe in. Breathe out. Pray. Smile.

I Worry, Then I Pray...

It's Parkinson's, they say.

Well, that explains a lot:

Impatience,

Frustration,

Falling,

More symptoms,

Forgetting,

Hand tremors,

Insomnia,

Impulse buying,

Jerking, crying,

Fear...

Yes, that explains a lot.


So, now I'm a "caregiver."

Noble idea, but not easy.

Patience in the face of accusations,

Calm when facing frustration,

Protection against falls, and assistance when he does,

Becoming an instant expert,

Keeping track of ever-moving items and constantly looking, looking, looking...

Comforting the trembling hand,

Tissue for the tears,

Functioning through sleepless nights and bloodshot eyes,

Watch-dog for expenses and teddy bear when he's afraid.

Sometimes I worry, then I pray, and am filled with peace

So I can keep breathing in and out.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2019 Lurlynn Potter

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