Helpful Tips For Taking Care of People With Parkinsons

"Living with Parkinson's disease can be overwhelming.  My husband was diagnosed about 5 years ago although we think that he has had it longer. Today he is 62 years old.

When he was first diagnosed, we were both frightened by what lay ahead for us. It was all an uncharted course for us. I made my husband promise me that he would not give up and that he would cooperate with me as I tried to help him. 

He has kept that promise and I believe that it has drawn us closer.  We have good days and days when he has a hard time. On the bad days, we just blame "Parky" for his troubles. 

Keeping a sense of humor is VITAL!! This disease will overwhelm you if you let it!  We laughed when our grandson said, "Grandpa quivers" to which his cousin said "No, he is just shivering".

- Anonymous

"My husband is still able to drive and get around pretty well. He does however, have trouble with dressing, grooming, and cutting his food.  Mostly anything that requires hand and finger coordination has become difficult if not impossible. 

Here again, he is not too proud to ask for help. The grandchildren are eager to help Grandpa get up from his chair or hand him something. No one treats him like an invalid but each one with "lend a hand" as he needs it.  

One thing that I personally feel is SO IMPORTANT is to keep active.  With the medications that are given to "manage" Parkinson's, comes a host of side-effects, number one being extreme tiredness. My husband would sit in his recliner and sleep ALL DAY if I let him.

He still takes Carbidopa/Levadopa however he was not able to "tolerate" the "side-effects" from any of the other medications the doctor tried. So, we have turned to a more "natural" approach using Nutritional supplements.

We have found that O.P.C.-3 and CoQ10 along with a good multivitamin and B-12 has really helped him. He takes these supplements in an isotonic form which means that they are absorbed and not digested so he gets about 98% of their value.

We have also learned that (at least in his case) the cold weather really affects him. The cold and damp weather makes his body very "stiff" and he has more trouble "locking".

"Locking" is another problem when we travel. We have learned that we must plan ahead as getting "locked" in a small place (like the plane's bathroom!) is not good!

For the caregiver/spouse, I offer this advice. Remember, this is the same person you married. He/she is just locked into a body that doesn't work like it used to.

Don't take yourself so seriously. LAUGH together. Parkinson's is just a disease. It doesn't define who you are.  It is a good "excuse" for getting a Handicap Parking Card.

Look at the bright side, if you take your husband shopping with you, you get great parking!!

You also need some alone time to "recharge your batteries". Don't feel that you have to carry this alone. Involve your family, help each other. Being the caregiver is hard work.

Don't be ashamed if you get tired. It is important that you talk to each other.

Just because your mate has Parkinson's doesn't mean that they can't support you emotionally.  It is the “body” that doesn't work not the brain and heart!

I sincerely hope that what we have learned will help someone else "cope".  How well you "survive" this disease, depends largely on your attitudes. It is a lot easier when you stay positive. 

Look for reasons to be happy. Focus on what you CAN still do, not on what you can't! Some days might feel like "a trip downhill" but you can still enjoy the scenery around you on the way! The next day might be better so don't give up!"

- Melody from Escondido, California, USA

"I drive as often as I can on a weekend to see my friend who has Parkinson's.  It's at least an hour's drive each way, since he and his wife moved to be near their son and his young family of four children in case of emergencies. 

Both his son and his wife both work hard and are very much involved with their children's activities and their church, so they aren't able to help my friend as much as they'd like.

My friend is 76 and has stage 4 Parkinson's.  His wife has suffered dreadfully from rheumatoid arthritis for many years and struggles to cope. Unfortunately, every time he has been offered help by the social services my friend airily replies, "That's all right; we can cope!" much to his wife's justifiable irritation.

When I go to visit he 'takes me to lunch', meaning that I drive us somewhere and he pays for a meal.  This gives his wife a very welcome break, so that she can go off and visit a friend for the day, catch up on her sleep or do whatever she wants without having to worry about my friend.

On one of our outings I took the opportunity of gently asking my friend how he would manage if anything happened to his wife.  I told him that every woman needs a little time to herself for a bit of rest and relaxation and suggested that he might wish to give his wife time to 'recharge her batteries' by taking advantage of any help that was offered to him.

I am pleased to say that my friend now goes to a day center twice a week where he has lunch and sometimes enjoys the mental exercise of an informal quiz afterwards or recalling the words of an old song.

He has home visits from the nurse on a regular basis, which is also helpful. I guess my tip is to accept help when it is offered, if not for yourself then for your carer's sake.

The outcome can give your life more structure and even something to look forward to, which in itself can help disperse some of the depression that comes with the condition."

- Christine