Out of the Mouths of Babes.......

At one point after my diagnosis I sat my grandchildren down and read them a childs story on Parkinsons called "The Parkie Princess".  I believe most of them understood by the time we were finished the story for I had substituted my girls names (their moms) in place of characters in the book. When the story was over I asked them if they had any questions. One of my grandsons asked me "Grammy is that why you can't hear so good"  another one of my grandsons told me not to worry he said "Grammy when you can not smile anymore don't worry I will buy you one of those smiles on a stick and when you want to smile you can hold it up to your mouth" Boy they sure knew how to make me smile that night!

To Meet or Not to Meet....that is the Question

Support Meetings.....Do we really need them?  My doctor told me I needed to find a group support meeting to see and hear how others are dealing with PD.  To date I am not sure how this is helping me watching others in worse stages of this disease.  I feel this benefits the caregivers more then the actual patients themselves.  My husband has not attended these meetings with me, not because he didn't want to because I had asked him not to. I was afraid that he would be very upset seeing some of the parkinson patients.  I guess this has been selfish on my part but he loves me and respects me enough to realize that when I was ready for him to attend I would let him know. There are caregiver support meetings he could attend but I think he just wanted to wait and go with me when I felt the time was right. During the last meeting I decided it would be a good thing for Jeff to attend future meetings with me.  He will be able to speak and confer with other caregivers who can offer advice and friendship...I realize I am not the only one effected by this disease, all of my family is effected in one way or another.

Stress....One day at a Time!

Stress......we are all overwhelmed with stress today.  Parkinsons patients are told to live a stress free life, the less stress the longer and better quality of life we will have.  Please.....how do we live a stress free life. I have learned since being diagnosed not to stress over the stupid little things that go on around me, things that would have bothered me before. For example: during the holidays one of my grandchildren pulled the towel rack off of the bathroom wall by trying to do pull ups on it, his/her Mom was very upset.  I told my daughter not to worry about it, I can fix it and no one will be the wiser, it is not worth getting upset about. I also told her to stop stressing over things that she has no control over.  Did you know that if you have a parent who has Parkinsons you have a 1 in 3 chance of getting the disease. I have three daughters and I do pray that none of them follow in my footsteps in this respect.  My Dad had Parkinsons, we did not know it until he was further into the disease.  Not only did he have Parkinsons but he also had Alzheimers which he developed as a secondary to PD.  Stress...oh I do worry about the Alzheimers, I remember looking into my Dads eyes and he would look back at me with this pleading (as if to say please help me), no I do not want Alzheimers.  There are six children in my family, I am number five.  To date I am the only one who has been diagnosed with PD and I pray my brothers and sisters do not eventually get the same diagnosis. Learning to live a stress free life is not easy it will take alot of patience and I am sure there will be trying times when I will be overwhelmed with stress, but I am learning one day at a time.

The Michael J Fox Foundation

The Michael J Fox foundation is doing wonderful things in the research field for Parkinsons Disease.  This foundation is non profit and anyone can donate.  If you are interested in the research being done or would like to donate..please visit The Michael J Fox Foundation online. Together we can help find a cure for this disease.  Thank You

Shaken not Stirred

Some people enjoy sitting on chairs that massage, laying on mats that massage...at one point in my life I also enjoyed these things they seemed so relaxing, not anymore.....let me explain...before going on my medication for Parkinsons I would get internal tremors.  At first they were mild and would come and go especially when I was at rest...then they started to intensify to the point where I felt like my insides were being shaken with great force, I could feel them but if someone else put their hand on my body they could not feel anything. It was especially hard at night to get any sleep..I felt extremely scared (at this time I had no idea I had PD) I was afraid to go to sleep, I was afraid I would not wake up.  As time went on my internal tremors were closing in on me, I was at my breaking point and I truly believe God knew this for the tremors were becoming constant.  Can you imagine feeling like your insides were shaking 24/7? At this point I told my husband "I can not live like this". Thank God my diagnosis came shortly after.  Within 4 days of starting my meds I felt like my old self, the internal tremors had subsided about 90%, my sense of smell returned and I felt like I had a fighting chance.  I could not believe the difference this little pill made.  Not all Parkinson patients have internal tremors most have external tremors only.  At this point I had very few external tremors and they were very mild. It has been a good year and a half since starting my meds and for the most part I have felt pretty good. Recently I have started to lose my balance, not all the time just now and again and my internal tremors have picked up a little. So as I have said before everyone is different even though we are fighting the same disease. 

Go To Hell!

I am a very realistic person and recently I inquired about Long Term Health Care Insurance.  I know sometime in the future I will need long term health care either in a Nursing Home or at home.  Believe it or not I was told that I should have looked into this before I was diagnosed with Parkinsons.  I told the woman on the phone if I had known that I was going to get this disease at such a young age I would have inquired sooner. She told me (rudely) there was no way I would be able to obtain this insurance now that I was already diagnosed. I told her to go to hell and I hung up.............I have been told the same thing by many insurance agents. I told my husband not to worry when the time comes I will just dig a hole and jump in, he said not without me you won't...LOL

Why do medications cost so much.....

The main medication I take for my Parkinsons cost us out of pocket about $200.00 a month (after insurance). WHY? I do not understand why some medications are so inexpensive and others are so expensive. It seems like the medications that have no generics and you can not live without are extremely pricey.  What if I did not have health insurance? Without insurance the drug I am on would cost $2000.00 a month....WHAT? Who could afford that? OUCH! I seriously don't get it....