PD: A Primary Caregiver's Perspective of a Dreadful, Debilitating, Devastating Disease
We Laughed, We Loved, We Cried...Together
As the primary caregiver of someone who suffered with Parkinson's Disease (PD), I wanted to develop this Lens to hopefully help someone else going through the same experience. My husband Charlie (pictured at left before PD) died November 26, 2005 after experiencing for seven years one of the most debilitating diseases I've ever known about.
I do not consider myself an expert on PD. I'd simply like to help others in similar circumstances to avoid some of the things we didn't. I'd also like to encourage them to do some simple, positive things that might enable the PD patient to have an active, healthier life a bit longer than Charlie did.
This Lens is dedicated to my late husband Charlie. We lived, we laughed, we loved, we cried...together. And, most importantly, I know I shall see him again one day and as promised, he (and I) will have perfect bodies, minds and hearts.
The opinions expressed in this Lens do not necessarily reflect the opinions of Squidoo or other LensMasters.
What it is and what it isn't
What It Is:
"Parkinson's disease is a progressive disorder of the central nervous system affecting more than 1.5 million people in the United States. Clinically, the disease is characterized by a decrease in spontaneous movements, gait difficulty, postural instability, rigidity and tremor. Parkinson's disease is caused by the degeneration of the pigmented neurons in the Substantia Nigra of the brain, resulting in decreased dopamine availability. The major symptoms of the disease were originally described in 1817 by an English physician, Dr. James Parkinson, who called it "Shaking Palsy." Only in the 1960s, however, pathological and biochemical changes in the brain of patients were identified, opening the way to the first effective medication for the disease." Quoted from the American Parkinson Disease Association website.
What It Is NOT:
PD is not Alzheimer's and it is not Geriatric Dementia. A form of dementia is inherent with PD during the latter stages especially, but the PD patient does not experience the symptoms more commonly associated with either of the above diseases. Up until his death, Charlie knew who I was, knew his children, knew where he was, etc.
The photo in the extreme top section above is of Charlie at the age of 65 prior to the onset of PD. The photo above right was taken on Charlie's 75th birthday, August 1, 2005. He had PD for seven years at that point. Hopefully, the "before" and "after" photos provide some idea of the devastating effect of PD.
Caregiver's Can Do List - Things to do for your loved one
These are not necessarily in any order; simply as they've come to mind in thinking back on what we did and didn't do.
- Research and watch for all side effects of every medication prescribed. Discontinue use of the med and contact the physician if side effects are exhibited. As someone gets older, oftentimes more and more meds are prescribed. Keep the meds to a minimum as long as you possibly can.
- Research good sources for health supplements as a means of both minimizing the effects of PD as well as rebuilding/maintaining the body as a whole.
- Make sure he (and you) drinks plenty of the right kind of fluids (avoid carbonated drinks and caffeine). 4 to 6 8-ounce glasses/bottles of water per day is ideal for assimilating medication and flushing the system.
- Make sure he (and you) eats healthy. Avoid fried foods and most carbohydrates. Eat more protein (baked or broiled chicken, turkey and lean beef) and plenty of green leafy vegetables. Eat fresh fruit instead of unhealthy sweets.
- Make sure he (and you) exercises regularly. Walking is one of the best exercises he can do. WALK WITH HIM. Especially work on any muscles that are starting to become rigid. Physical therapy helps tremendously. Learn from a professional what can be done, then continue doing these exercises at home WITH HIM.
- Keep his mind and hands occupied! If he doesn't have a hobby or something else to keep him active, find him one. Encourage him to try new activities he may not have thought about.
- Don't assume responsibility for doing things for him that he once did because he seems to no longer have any interest. For example, if he managed the check book before PD, continue having him do so now. It may be more difficult, but help him do it (DON'T DO IT FOR HIM!)
- He (and you) at some point in this may become depressed. Don't think the depression is just going to go away...it doesn't. He (and you) may need meds for this, or may need to adjust other meds, or may need to talk to a professional. Whatever it takes, take care of the depression.
What Can Go Wrong - What happens if you don't do the above.
Corresponding to the above list, the following are real life examples of bad things that happened because we didn't know (in some cases) to do the above.
- Medications: we trusted the physician and I didn't research the side effects fully until Charlie began hallucinating and exhibiting extreme paranoia. On a smaller dosage of Mirapex, he was fine. But, when the doctor increased the dosage (because his tremor had worsened), the adverse side effects were devastating. He saw terribly deformed children in our home, in the yard, everywhere. He became paranoid to such an extent that on one occasion when I was trying to give him his meds, he thought I was trying to poison him. Once I discovered the problem and discontinued the Mirapex, he got better.
- Because we relied on the neurologist for "proper" medication, I did not research all the possible non-chemical alternatives that might have made a huge difference for Charlie.
- Charlie became basically over-medicated several times during the course of PD because he would not drink sufficient fluids. Another problem we encountered was fluid retention and (believe it or not) it was because Charlie was not intaking enough liquids to keep his system flushed and healthy. Another effect of PD is extreme constipation; sufficient healthy fluids will help lessen this condition.
- Healthy eating habits are good for anyone, but especially someone with PD. Lots of fiber, of course, also helps the constipation. Raisin Bran seemed to work best for Charlie. Supplements like Ensure should be avoided until absolutely necessary. PD Patients will also have a problem with swallowing, so it is extremely important for them to eat properly, regularly, and avoid foods that are difficult to swallow (crisp, tough, stringy, etc.). Foods should be cut up in small bite size pieces and chewed well.
- Charlie was not one for exercising and it was terribly difficult to get him to do so. If I had to do over again, I would BULLY him that much more on this account. The more you keep moving, the longer you'll be able to move!
- Charlie's occupation was his life. He had no other outside interests or hobbies. When he was diagnosed with PD, he was devastated and became very depressed. Having no interests to keep his mind and hands occupied made it even worse. If he'd been interested in gardening or painting or anything else, perhaps he might have lived longer. It's hard to say at this point.
- I made the terrible mistake of assuming that Charlie did not want (or was unable) to perform even simple tasks (like writing his name!). In all honesty, some things were just easier for me to simply do them rather than get him to do them. That was a terrible mistake. As long as the PD Patient is able to do any task, he should be allowed and encouraged to do it.
- Depression is an entire subject unto itself. Suffice it to say, it's going to happen at some point in the progress of Parkinson's (either to the PD Patient or to you, the caregiver, or both). Be prepared and watch for signs of depression and solicit help early on. Meds are not necessarily the only way of dealing with depression either...they're just one way. Talking to others is a great help, so talk it out (with family, friends, or a professional). Surf the 'net to find additional sources of information.
- Final Point: There were so many things we did wrong, simply out of ignorance, that looking back our circumstance would have been much better had we done them. So, anything along the lines of good healthy living that you can think to do...do so and have your loved one do so.
Care for Yourself - A Caregiver's Can Do List for Herself
Some things that come to mind that helped me so that I could better help Charlie:
- Have someone you can rely upon to step in when you feel overwhelmed. My sister Wilma, was a God-send and did just that for me.
- Take advantage of support groups that are available in your area. That's what they're there for.
- Find the funds somewhere to have a professional caregiver come in 1-2 times a week, just for your relief. "Miss Doris" was also a lifesaver. She took care of Charlie 2 days a week for me so that I could go into the office (I worked from home 3 days a week).
- Take full advantage of all the family members that you can for temporary relief (1-2 hours at a time). This will allow you to take a drive, go to the grocery, etc., to get out of the house awhile.
- If you need it (and you probably will at some point), seek assistance from a professional therapist or counselor for your own sake. I did.
- Have an outlet. Mine is mowing. We have 10 acres and much of it is cleared and kept manicured using my riding lawnmower. When I felt the pressure building, I'd call a family member to come stay with Charlie and I'd get on the mower and ride. Great therapy!
Helpful Links - Recommended Links for Research
Places on the net where I found help:
- American Parkinson Disease Association
America's foremost association on PD (my opinion!).
- Caregivers Q&A
Plain speaking about Parkinson's disease for primary caregivers, family, friends, and colleagues. Excellent resource!
- Medco Health
Great link for researching presciption and non-prescription meds.
- Michael J Fox Foundation
Dedicated to ensuring the development of a cure for Parkinson's disease within this decade through an aggressively funded research agenda. Read Michael's story (see book link below).