Posted 22 May 2014 - 09:59 PM
Trying hard and Didi...
There are few times I am at a loss for words...and this is one of them. My heart is full, and I want to convey so much to both of you, yet, words seem so inadequate. You are true true heroes to support your spouses as you do. I admire and respect each of you....and when you begin to question your own strength, please remember your selfless service to your loved one has already proven your worth....you both walk the walk...24/7...you do for them, worry for them, and cry for them.
I hope you both make time for yourselves and find a source of pleasure and energy outside of the dynamics of PD.
Specifically, Didi, it is so obvious you and yr husband are still in that first stage of the grieving process for your previous life before PD. It is fresh in my mind, as I was in it just a few weeks ago. The questioning, the searching for alternative treatment...the obsessive compulsion to make the right decision...I am telling you....as others told me....that truly is causing more stress than anything else. It is painful, but it is something you have to experience....I was just there....and then one day...with Christie's help....i cd no longer deny my symptoms...I can no longer deny I must take the meds to have a quality of life....and, so, in a way, it is a good thing...I have transitioned to the nxt stage of grief...acceptance.... beau's mom made an outstanding post explaining the grief process as it relates to PD diagnosis...
And she is so correct....I think PD is a continuum of loss...a continuum of grief for each new loss each day as we see our capacity diminish....
But, there will be a day....and trying hard has been there....when the mania of resistance to the truth and the desire to find a miracle cure transcends to a numb like acceptance of reality......and, Didii....as odd as it sounds, it brings relief. So my counsel is to discuss more with your husband the reality, and less of discussion of how to discredit doctors or test results ....cuz he is feeling the deterioration, and the more energy that is expended in denial, the more energy is taken from him to manage his pain....his pain of grieving for his loss.
I kinda disagree with the notion to remind him he is walking stiff....and especially note he walks different when he is "out and about"...ya see, I can arise from bed with a very stiff "penguin walk" and later walk 1 1/2 hours on the desert with no symptoms.....it is as frustrating for us as it is for the observers...we never know when we can walk or not walk...it has nothing to do withour "will" or ability...and, Didi, it can change in hours....it can change in minutes...I can walk fluidly into a store, and then be limping in minutes. It would be frustrating to me if someone were to mention the change....trust me, we all know what our bodies are doing....or not doing...
Well, per usual, I prove I am NOT at a loss for words, and I apologize for going on so...I am emotional right now after reading the exchange between you and trying hard....I am very grateful to you both for telling your stories....I am grateful you both post here...you provide a different perspective...and your love for your husbands is evident.....and it strengthens me to hear from both of you.
You ladies are creating your own legacies independent of the PD lurking in your lives...and the family who surrounds you...the young and old are learning from your example....the impact you have on others will endure for generations. God bless you.
Dx'd 6/13 @ 66 by MDS with sub linquil L dopa challenge. Meds: Carbidopa/l dopa 50/200 5x in 24 hr
4/15, reaction in 6 mos to Amantadine 100 mg 2x per day.
DaT scan '13, normal. MRI '13, normal. DaT scan '13 repeat, normal. DaT scan '14, normal. DaT scan '15, normal.
Symptoms: 90% - 100% controlled: bilateral body tremors, chin tremor, tongue tremor, rt leg drag, balance, slow movement, cognitive/speech, apathy, executive function, autonomic systems. Patient to Neuro, "Next appt, on or off meds?" Neuro to patient, "ON meds...you are too scary when off!" <smile>
DH: dx'd PD 4/15 @ 70 by MDS with l dopa challenge by prescription. DaT scan, '15, normal. Meds: 25/100 mg carbidopa/ L dopa, 6x per 24 hr. Now being evaluated by VA for "agent orange" PD.