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Topic Common sense Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2014.10.18 20:54
To me after all these years with P.D. common sense seems to be lacking in the field of treatment and research. I have from the start tried to identify what's happening to me in this disease, feelings, symptoms and problems when they arise. It has caused me to butt heads with any number of people, professionals and layman alike. But I still keep on butting and pondering.

I'm no superman, never claimed to be and sometimes answers are staring us in the face yawning waiting for our moment of "Hey I bet" many aren't like me and many aren't afforded the time to view inside the rabbit hole of Parkinson's Disease for as long as I have. So please help us PWP and those who follow by sprinkling observations made along the way in your journey. It has been a rough few months in my world here I had to retire Tess (my service/balance dog) in mid July She's residing out in Eastern Massachusetts in the care of a hospice nurse who adopted her. Then at the start of August one of my sisters was diagnosed with cancer, she passed Tuesday and the funeral was today. Stressful times! But if we look most times good can be found in the bad and what I've observed in my case is a basic common sense fact that most times is over looked DOPAMINE isn't just for movement and autonomic systems. It has a lot to do with how we relate mentally and react to the world. In stress sometimes things become clearer if We look. This week the seemingly endless phone calls I could handle better when my meds were working and at peak. Today the funeral med's working handled it well after at my Nieces home pill time and sensory over load sweating mild confusion .....went outside till pills kicked in and then could handle the many on going background conversations. It seems that with my limited dopamine trying to run my body and keep up with surrounding din It's getting harder, couple that with waning levels and it becomes a real problem. With holidays coming we may want to keep this in mind as our/we PWP step out become withdrawn however one terms what happens. It dawned on me that these might be answers to questions on different threads here. NCIS type showing follow along a plot line while always not obvious we can still follow the plot without too much sensory input. The voice switching camera angles showing singing and audience reaction the noise, clapping and hooting may be too much bombarding us. A search for stimulating entertainment throughout the day to keep us busy might be more than we are capable of processing depending upon our drug levels and the input being received. We may have use to done things but now not because of lack of drive or laziness we don't or don't want to because we aren't capable of it we lack the connections in our brain to do them or at least during the ebb and flow of our medicine we have times we can't.

As I said above I tend to delve into my problems when they arise and think what is going on many people aren't that way or can't explain what's happening. It's just and observation that carried out what interested Us before and what We enjoyed before we may not be capable of handling now. To Me this makes sense and I hope the medical field explores this deeper . Well I've bored you all enough for now, take care, best of luck and hang in there

By jcoff012 On 2014.10.18 22:03
May you find peace this evening, My Friend. Life often seems unendingly cruel and sad, but you just keep going. We are all glad you are always articulate...a life well lived because you have a great help us all as only you can, thank you. Rest and I am so very sorry for your loss. Love always, Jane

By umajane On 2014.10.18 22:29
I am sorry for your sadness. Thank you for all you give to us.

By Sheridan On 2014.10.18 22:29
Al, I am so sorry to hear about the losses you have suffered. I know that you are relieved that Tess has a good home but it must be extremely difficult to lose your companion. I am praying for you on the loss of your sister and am so glad that you are surrounded by family who can bring you support and comfort. It is amazing that with all you are going through you still take the time to help your PD friends by analyzing your PD experiences and sharing your insights.
My husband also has times when his meds are"off" or "low" when he is very sensitive to stimulation and cannot focus or process. We may be in the middle of an important discussion when he will signal that we need to continue later as he needs to go somewhere quiet until meds "kick in". i confess that I have taken to writing down the subject matter cause by the time his meds are working neither of us can remember! Take care Al and thank you for being the voice of PD.

By ResistanceFutil On 2014.10.19 08:38
Thank you for your insights re dopamine levels. The challenges of this disease are starting to sink in and posts like this help.

Condolences for the loss of your sister. I am sorry for the loss of your service dog as well.

By Mary556 On 2014.10.21 09:12
Peace be with you, Al. Thank you for all you do. I read your words and a light goes on in my head. It helped me to be reminded about PWP expressions.
I'm sorry for your loss of your sister and for your parting from Tess.
Grieving is hard work sometimes. Please take good care of yourself these days. Will you have a new service dog? Best wishes and prayers for you.

God bless all PWPs and caregivers.

By VioletV On 2014.10.21 19:42
Your presence is such a gift to all of us. I will make an intention to hold you in the light during this difficult time.


By parkinit On 2014.10.21 23:26
Al, you are such a constant force on this forum and a wealth of wisdom. I'm sorry for your losses. It is tough when the ground we stand firmly upon begins shifting under our feet. We lose our balance, have to readjust and hope to stay balanced for a bit longer before it shifts again.

By Daybyday On 2014.10.22 14:24
A very big thank you Al, for all of your thoughtful and thought provoking additions to this site. We all appreciate your unique perspective more than you will ever know. Like everyone has said, I too, am so sorry for the losses you have suffered. We will keep you
in our prayers. You are a strong soul and will make it through. We all have to learn to be strong like you. Peace.

By JulieB On 2014.10.24 09:28
Al, I am so sorry about your sister's passing. And about having to retire Tess. Yet you always are able to bring perspective and tell everyone to hang in there. Thank you for being here. I'm giving thanks for you today... xoxo

By Marilyn-NJ On 2014.10.29 12:59
Al - my sentiments are included in each and every response to your posting. I don't always get onto the sight because life and work keep me at bay. I do have to write and at least validate everything you detail. I'm seeing all of this through the eyes of the caregiver and I get what you are saying, always. Your commentaries through Parkinson's eyes are just unbelieveable and priceless - if that's the right term. I get upset with the medical profession for the many points you bring out. I feel they could be doing a better job with analyzing the disease and the course it takes. I hope you're documenting it all. I hope it's not just here, amongst the community, that your strength and wisdom and caring reside.

For all that you continually contribute....thank you!

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