Parkin at My Own Pace

It’s been a long time since my last blog... my Moms death threw me ... I knew it was inevitable but it has had a lasting affect... it gets easier but it never gets better.  When I lost my Dad and then my Mom I believe I lost a part of myself.. I know I did, there is a big empty hole in my heart.

I am still going strong with my Parkinsons .. some loss of balance here and there...some external tremors now and then... internal tremors yes I get those often but overall I’m still in good shape Parkin at my own Pace.

Stay tuned for upcoming blogs

My Mothers Journey into the Light....

This past October..exactly two years to the date when my Mom had found out originally she had breast cancer....my Mom was told she had an additional two masses on her breast. She had the masses removed and biopsied and found out they were also cancerous...with additional testing we found her cancer had spread into her skeletal wall and into her lymph nodes..in addition she had some spots on her lungs and her original pet scan had showed a hot spot in her lower bowel and anal area.  Over the New Years weekend she had some lower abdominal cramping which she contributed to her diverticulitis..  She refused to go to the hospital because it was a Holiday Weekend.  The Monday after New Years she did consent to going but told me to "say goodbye to her now as she would not be coming home".   Mom had an abscess in her bowel which had burst....she refused to be operated on because of her weakened state of health and her cancer.  After being in the hospital on antibiotics for five days her doctor informed us there was nothing else they could do for her, we could either leave her in the hospital or take her home on hospice.  I was not leaving her there to die, if it was going to happen I wanted her to know she was home. Mom came home from the hospital in an ambulance and when they brought her in she smiled and said "Home Sweet Home". In that moment I knew we had done the right thing bringing her home to die....Mom lived for a week at home, the first few days she was alert, talking and in alot of pain...but she never lost her sense of humor.  Her forth day in she slipped into a coma like state, I knew she could hear us because when I would talk to her she would raise her eyebrows.  We brought her home on a Friday and she lived to the following Saturday exactly 8 days.  She was 10 days shy of her 89th Birthday which is today January 24th.  Mom was 88 years young at heart...she was surrounded by her Family when she passed...My sister Maggie and I were with her through her journey into the light to be greeted by our Dad....I know he was so Happy to see her...I imagine them dancing off into the light together...they were great dancers....I Love You Mom and Dad....

What causes Parkinson's disease?

The exact cause of Parkinson's disease is unknown, although research points to a combination of genetic and environmental factors. If a continuum existed, with exclusively genetic causes at one end and exclusively environmental causes at the other, different patients would likely fall at many different places along that continuum.

In the past 10 years, researchers have identified a number of rare instances where Parkinson's disease appears to be caused by a single genetic mutation. In these cases, the mutated gene is passed from generation to generation, resulting in a great number of Parkinson's cases within an extended family. On the opposite of end of the continuum, in the early 1980s, a group of heroin users in California took drugs from a batch contaminated with a substance called MPTP. After ingesting this chemical, the drug users were stricken with a form of Parkinson's disease that was primarily, if not exclusively, "environmental" in origin.
For most Parkinson's patients, the cause lies somewhere in the middle. While many PD patients report one or more family members with the disease, it is not always clear that one or several genes are the cause. Similarly, while some patients suspect that exposure to one or another chemical or environmental toxin caused their PD, this also cannot be conclusively proved. Scientists currently believe that, in the majority of cases, genetic and environmental factors interact to cause Parkinson's disease. Research into this subject continues aggressively every day. Unfortunately, however, it is generally impossible to determine what specifically caused an individual's PD.

Patience and Love.........

I never realized growing up how much time and effort is involved in being a caregiver... until I became my Moms caregiver about 6 years ago.  At first she was able to pretty much function on her own but as time went on things slowly started to change. My Mom is now 88 years young and can still get around the house with the aid of a cane or walker but I can see how much her health has deteriorated over the last several years. About a year and a half ago she was diagnosed with Breast Cancer, she had the lump removed but decided she did not want Chemo or Radiation, The doctor informed us that he could not get all the cancer without removing her breast but she did not want to go that route.  She did take cancer meds orally for about 7 months (she was suppose to be on these drugs for 5 years) but they caused her to have severe diahrea and over time she lost about 30 lbs. She told the doctor she wanted off of the meds and he told us at her age you just have to respect what the patient wants.  After being off of the meds for several months the diahrea stopped, her appetite increased but she never did gain back any of the weight she had lost.  Recently she was in the hospital for a lower bowel abscess which they were able to treat with antibiotics, but low and behold her diahrea has returned.  During her stay in the hospital she had scans done which showed her gallbladder and pancreas are distended and the ducts are dialated..she refuses to have any further testing done.  Without additional tests we really have no way of knowing what is causing this problem...this is new since last May when she  previously had scans.  Regardless.... whatever is causing this problem would require major surgery which she probably would not survive....(her scans also showed large amount of calcifications around her aorta and all of her aortic branches).....  The Doctor said it could be cancer but we really do not know......
It is getting harder to get her out to her doctor appointments....getting her in and out of the car is extremely hard for me but somehow I am still manageing...the one thing I have lost with Parkinsons is Physical Strength.....When I take her out to a store I need to push her in a wheelchair because she can not walk for extended periods....(at the end of these days I am extremely exhausted).... I have learned from being a caregiver it takes alot of patience and love......you have to put the person you are caring for needs in front of your own....and it takes alot of strength.  One day I sat down with my husband Jeff and told him....."Honey I want to thank you now for everything you are going to have to do for me in the future, I know first hand how hard it is going to be for you....And at times I know it will be trying and you will be overwhelmed...and it may seem like I don't appreciate what you are doing.... but please always remember one Very Important Thing...HOW MUCH I LOVE YOU."

Hope Costs you Nothing......

When you are diagnosed with a disease I believe their is always doubt in your mind.  "Do I really have this"  maybe the doctor is wrong....Sometimes I still have doubts about my diagnosis or maybe.... just maybe.... I have Hope.  Hopefully a mistake was made..... Hopefully I do not have Parkinsons.  Maybe I have something similar and eventually the doctors will realize they were mistaken.  One can always Hope.  Hope cost you nothing but gives you everything. Hope makes everyday a little better, a little brighter and makes your life a little easier.....One can always Hope....Hope in a miracle, Hope for a cure or maybe just Hope you can handle everything that comes your way....."HOPE" a very powerful four letter word.

What is Parkinsons.............

It’s important to separate Parkinson’s disease from other conditions which produce similar symptoms. Doctors call Parkinson’s an idiopathic disease because no-one knows what causes it (the word idiopathic means “cause unknown”).

The term “parkinsonism” refers to a group of movement disorders, including idiopathic Parkinson’s, which produce the same signs and symptoms. In cases other than idiopathic Parkinson’s the causes - such as a stroke or the effects of continuous drug taking – can be identified.

Parkinson’s disease results from a lack of dopamine in the brain. The main area affected is a small section of the brain called the “substantia nigra” which transmits messages via neurotransmitters between the brain and nerve cells before passing them onto the muscles. Dopamine is one of these neurotransmitters.

For reasons that still baffle researchers, the nerve cells in the substantia nigra become damaged and degenerate and this in turn reduces the amount of dopamine available to the body. If there isn’t enough dopamine the nerve cells can’t function properly and messages don’t get through to the muscles. The lines of communication become progressively weaker until the brain can no longer control muscle movement effectively.

One or both sides of the body can be affected.

Studies have shown that 80% of dopamine producing cells have been damaged before the appearance of major symptoms such as muscle tremors, slowness of movement, balance problems and stiffness.

But scientists still don’t know what causes the problem - some believe it’s something in the environment, others say it’s genetic and some point to a combination of both. Genetics have been found to be an important factor in the onset of Parkinson’s in younger people. What researchers do know is that it mainly affects those over the age of 60 and becomes more common the older people get. The disease is also known to be indiscriminate, although slightly more men than women fall victim to it.It’s not a fatal condition but the mainstream medical profession tells us that, as yet, it is neither preventable nor curable. However, advances in modern medicine have made the disease very manageable.

High profile sufferers such as the actor Michael J Fox, who was diagnosed in his 30s, the boxer Muhammad Ali and Pope John Paul II, have increased public awareness of the illness. This has led to more money being ploughed into the kind of research which may one day provide the key to preventing and curing the disease.

Parkinsons Symptoms........Medical Consultation Needed

The most common symptoms include:

• Tremor, or shaking, often in a hand, arm, or leg. Tremor caused by Parkinson's disease occurs when the person is awake and sitting or standing still (resting tremor) and subsides when the person moves the affected body part.
• Stiff muscles (rigidity) and aching muscles. One of the most common early signs of Parkinson's disease is a reduced arm swing on one side when the person is walking that is caused by rigid muscles. Rigidity can also affect the muscles of the legs, face, neck, or other parts of the body and may cause muscles to feel tired and achy.
• Slow, limited movement (bradykinesia), especially when the person tries to move from a resting position. For instance, it may be difficult to get out of a chair or turn over in bed.
• Weakness of face and throat muscles. Talking and swallowing may become more difficult, and the person may choke, cough, or drool. Speech becomes softer and monotonous. Loss of movement in the muscles in the face can cause a fixed, vacant facial expression, often called the "Parkinson's mask."
• Difficulty with walking (gait disturbance) and balance (postural instability). A person with Parkinson's disease is likely to take small steps and shuffle with his or her feet close together, bend forward slightly at the waist (stooped posture), and have trouble turning around. Balance and posture problems may result in frequent falls. However, these problems usually do not develop until later in the course of the disease.

Tremor is often the first symptom that people with Parkinson's disease or their family members notice. Initially, the tremor may appear in just one arm or leg or only on one side of the body. The tremor also may affect the chin, lips, and tongue. As the disease progresses, the tremor may spread to both sides of the body, although in some cases the tremor remains on just one side.

If you have or develop any of the above symptoms it does not necessarily mean that you have Parkinsons.  There are other medical conditions with symptoms similar so you really need to seek medical consultation.