Thank you for picking PD as your area to study! This disease is different for each and every one of us, as you can most likely see by reading the various posts and discusions here. I am an RN, and had to retire 100% disabled several years ago. I can tell you that I never knew much about PD and it has been a learning experience for me.
If you haven't already, take time to read what's already posted on this community. I'm sure many of us won't mind sharing our experiences.View Thread
Hi jwp86....has John had any physical therapy in the hospital? It sounds like at the very least he needs to have some gentle range of motion exercises done while he is in bed. The Dementia is adding to the problem I have no doubt. I assume before he went into the hospital is was walking?View Thread
Glad to hear that some progress is being made with your Dad's physical condition! It would be nice for him to get even a little bit of quality of life.
I don't know anything about the accupuncture---sorry! For me, pain medications and keeping my body moving is the best help for the stiffness.
A thought just occured to me and I wanted to pass it by you as food for thought. If your Dad is unable to swallow, the physician might as about putting in a feeding tube for liquid nutrition to go directly into his stomach. Personally, I have not ever seen any REAL progression made with using this things ( worked for about 32 years) and I do not ever want one for me. You and your family need to have this discussion. Good luck!View Thread
From what you describe, you seem to have hit the nail on the head. He is both weaker and his PD symptoms have changed and might even have a few new ones. The choking and swallowing problems are extremely common with Parkinson's. Has his doctor or nurse suggested adding thickeners to his liquids?
I hope that you and your famiily understand exactly what his end of life wishes are so that you know just how far to push him and these treatments. I hate to sound morbid, but it is something that needs to be discussed before you are not able to anymore.
What kind of problems are you having? Inability to initiate urine stream? Inability to empty bladder completely? Incontinence? Frequent urinary tract infections (UTI's) ?
Yes, PD does affect the bladder. Remember that it is possible for PD to affect any muscle or body system in our bodies. It is a disease that causes interruptions/stopage/misfiring of the nerves that control those muscles. Make sure your Neurologist is aware of your issues.View Thread
Let me see if I can give a helping thought or two. First of all, the fall and hospitalization can definitely make Parkinson's worse---it's called a flare and sometimes a crisis. I know that each time I have even the slightest amount of illness or change, I have a flare and never come back as far as I was prior to the situation.
Do you have any home health services involved with his care? From the description you give of the size/depth of that bed sore, that surely is a trigger for home health to get involved in his wound healing and instruction in care for you. Ask his physician about getting it ordered. I'm surprised that the discharge planner at the hospital didn't get that all taken care of before he came home. Is there an air mattress for his bed? If the bedsore is located at his coccyx, he needs to be kept on his sides, rotating every 2 hours or so. If he keeps lying/sitting on it, it will not get better. It also sounds like some physical therapy would be a huge help.
I am a disabled RN and used to work a lot with homebound elderly. Don't give up----there are services that are most likely available to you.View Thread
Oh my...sounds like things are really tough for both you and your husband! You both need to be in counseling and on antipressants, at least for a little while. Is your Neurologist aware of the problems at home? Does your husband go with you to see him/her? He needs to be part of the whole picture.
Also, are there any support groups in your area? Often, there are disease specific groups for patients (and even their caregivers) and there are often groups just for caregivers. Sounds like he needs to vent and realize he isn't the only one in this situation.
I am so sorry you are going through this. It's bad enough having the damn Parkinsons.View Thread
I am unable to tolerate most of the Parkinson's meds, so I can't compare your dizziness to mine in that way, BUT, dizziness (vertigo) is very common in PD. I have it and use a cane when I am out and about because I never know when I might get dizzy or take a miss-step. My Neuro always has me close my eyes when I am standing (with his arms out ready to keep me from falling) and as soon as I shut my eyes, I am swaying big time.
I was wondering where you had gone, Susiemargaret. Glad to hear that you don't have PD. I can only imagine how you feel about that! I hope the symptoms have subsided for you and you can once again enjoy doing some things that had to be stopped before.
I also have been in a funk. There has been so much going on with my circle of friends (death, loss of a home in a fire.....I can go on but will stop) and I know that my brain just started to slow me down. I have been noticing some progression of my PD and it makes me feel sad. My memory is also becoming worse and was noticed on a mini-mental exam my Neuro gave me a few weeks ago. No shock to me or my husband. I am hoping that once we start seeing some sunshine and feeling some warmth outside that my mood will improve. Thank goodness I have appropriate meds for this and doctors who understand. Not to mention my husband and family/friends.View Thread