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Topic P.D. the invisible snake. Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2017.04.23 00:01
I'll try to explain (unfortunately it can only be from my point of view) the title of this. Most of the time P.D. is like a unseen boa constrictor. Maybe because it is inside of us. Waiting to pounce, to squeeze. We can have problems just fighting silently to breathe. To expand our lungs inhaling while the snake is doing it's best to squeeze and not allow this vital process. we ebb and flow depending on how the medicine is working at any given time throughout the day. To holler into another room takes energy to produce more volume in our voice. Throughout the day we may be hit with dystonia (think a long slow charlie horse). We nap and really I don't think many of us have a choice. I don't fall asleep eating or in the middle of a conversation by choice I fall asleep because fighting this constrictor has left me with nothing in my tank I'm out of gas. I might be fighting to keep balance or trying to push it doing something but we pay the price even if it isn't visible on the outside. Every system in our body is under attack. Eyes tremor get out of sync and oh great double vision. Periods of things We don't mention for the sake of not worrying our kin and caregivers more. A spot of dirt on the floor sprouts eight legs turns into a spider then back to dirt in the blink of an eye. Then the field of Doctors that has sprung up in the past couple of decades Movement disorder specialists. We have a movement disorder so they give us mind altering drugs and send in OT's and PT's to make us move more. Told we have to do these to help ourselves when damn my tanks empty and to hell with what they say they aren't living and enduring this but that leaves loved ones thinking we aren't helping ourselves and saddened because we aren't doing what the Doc told Us. We have misunderstandings with loved ones because we stop or don't start exercises our tank is empty and we cannot explain why because we don't have the energy to try to explain it. It's a lonely disease and at times so hard to explain to someone. We are inside this contrary body wanting to do what it will fighting to maintain a semblance of normalcy all the while fighting this constrictor snake making life miserable. I've ranted enough to go on now. Thanks for putting up with it. Be good to yourselves and each other.

By pinki53 On 2017.04.23 09:37
Thank you LOHENGR1N for reminding me that my dear husband does not have control over this horrible disease.
As his caregiver, I'm exhausted and sometimes think I'm going to go crazy. But you have reminded me that I am still free to move and do and think. He is not.
His voice is very quiet - but yes, he sometimes "yells" for me to come help him from another room. It's not a loud ye;; but our house is small fortunately so I hear him (a baby monitor in his man cave helps). His voice is mumbled and often slurred - sounds drunk but is not.
Double vision (I don't let him drive) and seeing things that aren't there. The doctor asks about hallucinations but I don't know if it's hallucinations or vision issues.
In the early mornings he can't breathe. Has to get up and sleep in recliner. Then later back to bed. Yes I want him to use the nebulizer more; he chooses not to :(
I thank God he does not have dyskinesia and has only a little dystonia now and then.
He has an electric power chair that gets him around the house. I cringe every time he runs into furniture or doorframes (I've had 2 doors widened). I vow to stop getting upset about it. It's just things and can be fixed or replaced.
He stays up very late in his man cave because he says he can't sleep; when he comes to bed he is completely exhausted and weak.
I'll try to remember your post here when I get aggravated and lose my patience.

By flowers12 On 2017.04.23 10:36
LOHENGR1N, we are fortunate to have you to help us understand this horrible disease. Thank you and peace be with you.

By moonswife On 2017.04.23 15:17
Al, when I read your posts my feet are grounded once again. You remind us all how fortunate we are to be the caregiver, and not the one who needs the care. Tired as we might be.....a ten minute nap can restore us. Not so for you and my husband.

By Trusting On 2017.05.01 23:28
Thank you for this post. I too forget the battle my husband is going through. I just want to cry when you describe how you feel. My husband can't seem to get the words out anymore. I'm sorry for all of you going through this horrible disease.
Blessings to you.

By lurkingforacure On 2017.05.02 13:34
Thank you Al, I know that must have taken a lot of energy to type up and put together. I am wondering if your service dog helped with any of what you described-sometimes animals can sense things...just having a warm soft loving pet on a lap might mean a world of comfort to someone feeling really isolated and alone (even when family is around).

My husband spends so much time in a chair nowadays that I am thinking of getting a mature (no puppies!) rescue dog for him to love on. Has anyone done this, and did it help your PWP?

By Mary556 On 2017.05.02 14:21
Dear Al, it is a blessing to know you.
Thank you for all you do to help us try to understand.

By LOHENGR1N On 2017.05.02 17:13
Lurking, You know I'm strong backer of service dogs. My first one was Squire a pound rescue (Sheppard, Collie mix) given a pardon last minute the place that trained him got a call from a pound they came and tested him on the afternoon of the day he was scheduled to be put down. I had Squire for over 12 years and had to put him to sleep (an agonizing decision). He gave me his all for all the time we had together. Losing Him ripped a large hole in my soul. Squire could open doors, turn light switches on and off, pick a dime up off the floor with his mouth and spit it into your hand quicker than I could pick one up. He could get me the phone and many other things and as time went on He learned and taught me things also. When I was still driving he began to sit forward at times and paw my shoulder between the seats, I'd tell him to quit it but he continued ..... Squire stop it I'm having trouble driving right now stop it. paw, paw, paw. Me looking at the clock almost an hour before next pill time. This went on, then I wondered if like a seizure dog was he sensing the levels of my med's dropping? So next time he pawed I pulled over and waited, took my med's and waited for them to start to kick in then drove Squire went back to his favorite past time looking for cats to bark at. Wicked smart Dog, average human. A few years later he started stepping in front of me walking and would stop again me Squire you can't stop like that I'll fall over you. It didn't take as long to ferret out that I was picking up speed as many Parkies do which leads us to trouble and falls. Again wicked smart dog but now a smarter learning human. After Squire within a year I got Tessa (Great Dane) She was a smart Girl and in no time put 2 and 2 together to step in front of me to slow me down before I ran into trouble (literally). I guess what I'm saying is in bonding with the dog it will pick up things we may not even be aware of and just naturally adapt themselves and us to compensate for it. If your husband is in a chair (wheel chair) bring it with you when looking for a dog. Watch for one who displays interest by themselves to approach it. There are other things to look for you may find help looking up service dog online to get hints the dog shouldn't spook easy it is okay to startle but they must compose themselves quickly. I had to retire Tessa a couple years ago she developed wobbler's syndrome in which the hind feet fold over and the dog walks on top of it's foot. What are the odds huh? My balance dog developed a neurological disease that interfered with her balance ! I was immediately offered another Dane but losing Tessa and Squire in such a short time of each other I was too devastated, so I passed, maybe this year I don't know. But good luck hunting for a companion for your hubby.


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