Karla Burkhart
Forum Replies Created
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Things that used to be important are no longer. However, life seems very rich and I have a new set of friends who understand. That is my Rock Steady Boxing group. We chat and chat and are always ready for support and advice. Other friends are good but these friends understand the basic needs and problems.
My family is dear and tries to be supportive but my sweet husband attends all functions with me and really seems to know what I need. He even boxes with me and it is really beneficial to him. I don’t think he would exercise otherwise. -
I started taking it for thinning hair. I was told that the thinning hair was from PD. I’ve seen some success but I forget to take it since it needs to be mixed into liquids and drunk.
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On days I can’t attend Rock Steady Boxing I use Yoga as a discipline. Without one or the other, I do not function well but become extremely stiff and clumsy. I use meditation most nights in order to get to sleep. I also use it if I wake during the night. I have recordings to help me with that. I have cut out using melatonin and have cut way back on other sleep meds since starting meditation.
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I’ve never heard of melatonin for acting out dreams. I take a slow acting tablet to help me get to sleep. If violent dreams are the problem, that is entirely different.
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The thing that seems to be on the top of my list lately is memory. I wish people understood that I don’t miss appointments, meetings, commitments, etc. because I don’t care. I just can’t remember them. Writing them down is only a small help. My Alexa keeps reminding me and I still forget. I seem almost “normal” to most people and so they don’t know why I can’t remember. Next on my list is the draining fatigue but I’ll dwell on that another day.
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Yes! I thought I was going crazy. I’ve never been overly sensitive to hot weather. In fact it has been a problem in the past because I wouldn’t realize I was overheating and I’ve gotten sick a couple of times in the far past. Now I can’t tolerate temperatures that a few years ago would have been just fine. Plus I am really having trouble with cold. I get cold so easily and suffer from air conditioning freeze when I am in public spaces. At night I seem to vacillate between too hot and too cold. There is never a “just right”.
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I quite often have jerkey movements when I’m going to sleep or waking up. Plus during the night if I wake up it’s usually because my muscles are tense or cramping. Then I have to move them and sometimes even then it doesn’t help. I haven’t talked to the doctor yet about it because it hasn’t been going on for very long.
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I played both the piano and the flute growing up. I have also been a singer since I was 12 and have sung in numerous choirs and jazz groups. I no longer feel confident to play the piano because my hands don’t work together. Also, with Covid I have been unable to sing and that is really taking a toll on my feelings. I’m afraid that by the time it is safe to sing again I will no longer have a voice.
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I have special cleats that hook onto my boots for slippery days. They have been worth their weight, which isn’t much, in gold. I also use walking sticks quite often.
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I don’t have trouble was acting out dreams. My trouble is not dreaming at all. I have an app that tells me how I sleep and it tells me that I have very little rem sleep. I understand that that can cause lots of trouble. I don’t know what to do about it.
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I was diagnosed in 2014 but had symptoms for at least 15 years prior. I was told for a long time I had Sjogrens, an autoimmune disease, which included pain and extremely dry eyes/mouth. It wasn’t until a started a tremor in my left hand that Parkinson’s was thought of. It seems that all the symptoms I had been having also fall under the PD list.
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I was beginning to have trouble singing but my neurologist referred me to a speech therapist. After a few sessions with her to improve my breath control among other things, she sent me to a voice teacher for a couple of sessions to follow up. Then I was back to singing. The biggest problem now is heavy fatigue since most rehearsals are evening.
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I, too, am a singer although not of Linda Ronstadt’s level of fame. I have worked very hard, even before I knew I had Parkinson’s, to maintain my voice. Voice therapy plus the help of a good voice teacher has been a life saver to me. I’m just not ready to give up my life.
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I had a number of problems for years before developing a tremor. It wasn’t until then that Parkinson’s was considered.
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As I am scheduled for oral surgery tomorrow morning to have another implant, my sixth, I have to say, yes, Parkinson’s causes tooth problems. I began this journey about 20 years ago, long before I knew about Parkinson’s. I had developed a dry mouth and eyes but no one told me that it was a problem to worry about. Then I started having teeth break and suddenly cavities, something I had few of in my whole life to that time. When you have a tooth break off at the gum line when nothing was wrong with the tooth until then, it is quite disturbing. I ended up having a whole rash of crowns. Because of the dryness, I was diagnosed with several different ailments but none really fit. Finally, I developed a slight tremor. I had developed stiffness and balance problems that no one could explain. They were both advancing slowly but surely. The tremor sent me to a neurologist who told me it was Parkinson’s. By now I am left with six teeth that are what I call “real” teeth–no crowns. If you are having dryness, don’t ignore it. There are remedies your doctor could help you with.
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We have slept on a SleepNumber bed for several years now. It has worked very well for us because each side is adjustable. It is a system of air baffles that you can fill or empty to the firmness you prefer. I find that my PD is not always the same at night and some nights I need more support and some less. We also have a heated mattress cover that is adjustable for each sleeper. I usually start out the night cold only to wake sometime later too hot. this way I can set it to be warm at the beginning but it will cool off to a very low level later in the night. Now if I could just turn off my mind I would have nighttime solved.
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I have gotten much more awkward of late. I tell myself that I don’t actually fall because I grab anything near, walls, chairs, people. I’ve met more nice people this way. I also have noticed that my depth perception is not what it used to be. Because of that, I try to be ever more vigilant when driving. My husband, however, will not admit to the same and scares the _____ out of me when he drives. I’ve also become much more adroit at knocking things over. The other day I fixed myself a big tumbler of hot cocoa and then promptly knocked over in two directions (I tried to catch it) covering my desk, bookcase, and well under the bed with hot cocoa. It would be funny if it weren’t happening more often now.
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I’m in Sandy, Utah, USA
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Sandy, Utah, USA
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I’m with Alan. I think the term “Parkie” is funny and any chance to laugh is one I’ll take. Besides, it’s a lot easier to type than “Parkinson’s” for my hands that no longer like to type. Mental health is being able to laugh at yourself and, believe me, the last few years have included many moments that made me either laugh or cry. I’d rather laugh.
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I certainly feel that my day revolves about med times. I not only have to set alarms on my phone but I also have to time meals just right. Regular life has to fit that schedule.
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I have more trouble with my toes than with my fingers. I have not DBS. There are so many strange symptoms with PD that made it hard to diagnose. The tingling, numbness, and pain are hard to live with.