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
There are many things that can throw us into a Parkinson's flare, or even a Parkinson's crisis. We cannot tolerate some things that don't affect those who don't have our disease.
There are certain medications that should NOT be given to Parkinson's patients due to our "wiring" malfunctions. Unfortunately, our specific needs are not well known within the medical or health care community. I would check with your husbands neuroloigist to see if he/she can contribute to coordinating with his care. Also, check out the National Parkinson's Disease website. Might be some useful information there. Good luck!View Thread
Your situation sounds a little bit like my own back in '06. I am a cancer survivor (finished chemo and radiation in '03) and I started having weird things go on with my body from the very beginning. Just to name a few---auto-immune thyroiditis, acute pancreatitits, .......the list goes on.
I had pain in my musces and joints and just felt lousy. in '06 I was short of breath with minimal exertion, so my Oncologist ordered a chest CT to rule out more cancer. Well, my life changed that day and hasn't been the same since. After I held my breath as instructed and then told to breathe, I could NOT breath. My pulse immediately went into the 160's and not even oxygen helped me. Taken to the ER and they tried Valium and all sorts of things thinking that I was havine an anxiety attack. My HR did not go down and the problems with breathing didn't either.
Long story----I have had cardiact workups that show some minor changes and need follow-up for. More pain and unexplained shortess of breath with BAD chest pain. I was finally diagnosed with Parkinson's Disease by a local neurologist and confirmed the diagnosis at a major movement disorder office. Turns out that one of the chemo drugs is a potential neurotoxin and it triggered the Parkinson's. What happened that day in '06 was I had a muscle spasm in my diaphragm and other respiratory muscles that would not release.
Have you been evaluated by a Neurologist yet? The two things that finally made things fit together were my tiny handwriting and my gait. Since then, things keep progressing. All kinds of digestive issues and mental problems.
Good luck to you. I hope someone can put everything together for you.View Thread
I don't have depression, but I do have Parkinson's Anxiety, which greatly affects my quality of sleep. For now, I am pretty well maintained on Nortirptyline and Celexa at bedtime and Xanax as needed during the day.View Thread
Unfortunately, the problem with swallowing food/drink is not rare with Parkinson's. I have it as well and understand the concerns that you have.
I had a swallowing study done in the radiology dept at the hospital. A Speech Therapist and Radiologist both stood beside me and administed the test together. I had to swallow increasing viscosities of food, from extremely thin liquid to finally eating this barium-type paste on a graham cracker. The test pinpointed exactly where my problem is. I worked with a Speech Therapist several times trying exercises to do to try and train my other muscles to kick in and help swallow.
Along with that, I also have strictures that form in my lower esophagus and make passing food into my stomach very difficult. My GI doctor dilates these a few times a year, which is an outpatient procedure done under twilight anesthesia.
So, all of that being said, and considering your father's age, try modifying your dad's diet. A mechanical soft diet has helped me very much. All that means is that I try to not have to chew very much because then my tongue and other muscles get too tired and make it very hard to initiate my swallow. Experiment with types of food as well. For example, I have a hard time with bread, but do pretty well with crackers.
Talk to your dad's neurologist and see what can be suggested. Sounds like a dietician might help you with this. Good luck!View Thread