A Year in the PD LIFE

I started this blog about a year ago and below is my first blog post about having Parkinson's Disease.  I have learned so much and read so much and have met so many wonderful people online who also have PD.  My PD is about the same as it was a year ago. I still take the same amount of Carbidopa-Levodopa   I still have Sciatica but it is not as bad as it has been although it is still extremely painful!   I have two walkers, both given to me by wonderful friends and I appreciate their kindnesses!  Other than my nervousness around stairs, I think that my PD doesn't really control my life as much as I thought it would. I still have no tremors.  I had started to exercise but then I had retina surgery and I have to wait until the air bubble in my retina disappears, a few more days, before I can exercise again! I have learned a great deal about this disease, and I am trying my best NOT to think about getting dementia because that really scares me! I am wondering........how do we know when we are really losing it mentally?? I guess that is where our family and friends come in if they notice really weird behavior. So many things happen in a year's time. Time moves on an we have no choice but to move forward with our disease.  I think that sharing information with each other is the most helpful thing we can do for each other. Yesterday in the Facebook Group  Everything About Parkinson's Disease, we had a great chat about my blog post about whether or not our families really "get it" about our disease. Someone said that their wife left them over their diagnosis....so so sad about that. Others said that they just do the same things as they always did before their diagnosis and that is what their families expect of them....same thing with me!! Others talked about how wonderful support groups are so I think I will work hard to find one and go to it a few times! So here I am, a year after diagnosis and pretty much living my life the same way! If anything, I am doing more with life, not less.  I am trying to blog everyday, I run two Facebook Groups, one for Older Adoptive Moms and one for Parkinsons's People, and I am going to join a writers group at my local library. The more I am out and about, the better I feel emotionally and physically!

This morning my daughter Olivia had a huge buck ram into her car while driving to work. She was so shook up and so scared. She is OK, Thank God but she could have been seriously injured or dead. Her car looks like she shouldn't have been able to walk away from it. So in the scheme of life, PD is just not that big of a deal in my life  right now.

 

 
POST FROM FEB 12, 2019

 
This adorable card was made by my friend Debbie's granddaughters Paige and Brielle.  I just LOVE it, they are the sweetest little girls!

  I HATE having Parkinsons, no ifs, ands, or buts.  I just hate it but I am not going to let it control my life.  I don't have any problems with tremors or shaking, at least, not for now. I am trying to remain as positive as I can be.  I buried my 18 year old daughter Amy in 2001, there is nothing, including Parkinsons, that can ever be as difficult to live with.  All bereaved parents know that there is nothing worse than losing a child.
I copied the info below from WIkipedia.

Parkinson's disease (PD) is a long-term degenerative disorder of the central nervous system that mainly affects the motor system.^[1] Non-motor symptoms, however, become increasingly common as the disease worsens.^[1][4] The symptoms generally come on slowly over time.^[1] Early in the disease, the most obvious are shaking, rigidity, slowness of movement, and difficulty with walking.^[1] Thinking and behavioral problems may also occur.^[2] Dementia becomes common in the advanced stages of the disease.^[2] Depression and anxiety are also common, occurring in more than a third of people with PD.^[2] Other symptoms include sensory, sleep, and emotional problems.^[1][2] The main motor symptoms are collectively called "parkinsonism", or a "parkinsonian syndrome".^[4][8]

The cause of Parkinson's disease is generally unknown, but believed to involve both genetic and environmental factors.^[4] Those with a family member affected are more likely to get the disease themselves.^[4] There is also an increased risk in people exposed to certain pesticides and among those who have had prior head injuries, while there is a reduced risk in tobacco smokers and those who drink coffee or tea.^[4][9] The motor symptoms of the disease result from the death of cells in the substantia nigra, a region of the midbrain.^[1] This results in not enough dopamine in these areas.^[1] The reason for this cell death is poorly understood, but involves the build-up of proteins into Lewy bodies in the neurons.^[4] Diagnosis of typical cases is mainly based on symptoms, with tests such as neuroimaging being used to rule out other diseases.^[1]

There is no cure for Parkinson's disease, with treatment directed at improving symptoms.^[1][10] Initial treatment is typically with the antiparkinson medication levodopa (L-DOPA), with dopamine agonists being used once levodopa becomes less effective.^[2] As the disease progresses and neurons continue to be lost, these medications become less effective while at the same time they produce a complication marked by involuntary writhing movements.^[2] Diet and some forms of rehabilitation have shown some effectiveness at improving symptoms.^[11][12] Surgery to place microelectrodes for deep brain stimulation has been used to reduce motor symptoms in severe cases where drugs are ineffective.^[1] Evidence for treatments for the non-movement-related symptoms of PD, such as sleep disturbances and emotional problems, is less strong.^[4]

In 2015, PD affected 6.2 million people and resulted in about 117,400 deaths globally.^[6][7] Parkinson's disease typically occurs in people over the age of 60, of which about one percent are affected.^[1][3] Males are more often affected than females at a ratio of around 3:2.^[4] When it is seen in people before the age of 50, it is called early-onset PD.^[13] The average life expectancy following diagnosis is between 7 and 14 years

   The only symptom I have right now is difficulty walking. (Dan  and my daughters might say I also have DEMENTIA) My legs seem to freeze up and I can't move!  It is very frustrating,  I was never exposed to pesticides, never had a head or brain injury, and I am a female.  No one in my family ever had it.  I had a brain MRI and that was all clear from tumors, lesions, etc.  So the only diagnosis left was Parkinsons.  Since last April I have had the worst sciatica so I assumed my movement problems were from that!As my disease progressed,  my daughter Renee, who is a PA(physician assistant), suggested I see a neurologist to rule out Parkinsons.  The problem was that he ruled it in instead of ruling it out.  I started on the levodopa about a week ago but it really is not helping much but I am hopeful it will if I take it for awhile.