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
Dear jwpj86---so sorry to hear about your husband. You have come to the right place to read about this disease. There is lot's of medical information on the general WebMD site, but if you want to find out from those of us already in the trenches, read everything you can.
One thing I hope you will notice is that Parkinson's is very individualized. By that I mean, there are not too many of us that have the exact same clinical course. Has your husband been evaluated by a Movement Disorder clinic? If you are close to large medical institutions, you are most likely close to one. Do you like his Neurologist and is he/she a person you can be very open with? How about PD support group?
Make sure you educate yourself. There is a lot of free info out there that you can even order and have shipped to your home.
I as well have given up using cursive, unless I have to sign my name. It is practically un-reable. I like to make cards, and find that it's good therapy for my hands and my brain. I do laugh, but then I have to spend time time to "recover". My voice is hard to hear most of the time, and it can be very frustrating when I think I am yelling and still can't be heard!
My physical and mental stamina are affected more and more. Eating is a problem, but I can make do right now with a mechanical soft diet. I go to my GI doctor about every 3 - 4 months so he can stretch the strictures that form way down near my stomach. Pain pills help with the almost constant body pain. I take 3 different anti-anxiety meds to help with the Parkinson's anxiety and to help me sleep. They have helped me so much!
My family and friends are very helpful and supportive. Of course I keep them all educated with every new thing I find out about PD---and lately the new buzz concerns---guess what??? Respiratory problems!! I'm sure a lot of us could have told them that a LONG time ago!View Thread
Some days are better than others! I have found that I don't breathe well in high humidity. So, that means staying inside when the weather people advise it and try not to make your showers too hot---or, just hang your head outside of the stall for a few seconds!
PD is such an individualized disease. No wonder it is so difficult to diagnose. I am unable to tolerate the usual PD diseases, so we are just sticking to symptomatic treatment. I also have trouble initiating my swallow, and had some speech therapy about a year or so ago. Helped some, but it is just something I have to deal with. My diet has become what is called a "mechanical soft" diet, which means that I minimize the amount of chewing needed. I have strictures that keep forming way down in my esophagus which need to be stretched about every 4 months or so.
Keep track of new symptoms. I have found that my notebook app on my cell phone is a perfect place to do so since always have it with me. Keep checking on this site and you will see some of the other problems we PD patients have. Another good site is National Parkinsons Disease one. They have lot's of printable free information.View Thread