[Karla]

Acupuncture helped me relax watching away helped symptoms because tension was a big thing with my symptoms. Other than that, I haven’t tried much other. I try to keep open mind about different methods.

[Karla]

I was getting slower and slower walking and my balance was off. I have been a very fast walker and could no longer keep up the pace. I also was more tired.

[Karla]

Along with lots of water and lots of exercise, when I have problems I have several cups of Postum during the day. It sometimes takes several cups over a couple of days but it usually does the job. If the constipation is consistent then I consistently take Postum. Plenty of fiber and little sugar also helps but I find that sometimes it hits Constipation hits anyway. I found the Postum secret when I was having my children. Recovering from childbirth always causes problems and that seemed to do the trick.

[Karla]

I have been having a lot of trouble with motivation lately. It just seems like I’m too tired to do anything even though I may get enough sleep. It just all seems too hard. I’ve been wondering how to lift myself up. I haven’t found an answer yet.

[Karla]

We no longer sleep in the same room, but it’s not because of my Parkinson’s. My husband has REM dysfunction and acts out his dreams. At times, he throws himself out of bed and can be quite violent. Because of that we sleep in separate rooms. At least he sleeps. I seem to toss and turn all night. I had an overnight sleep test and found that I did not have apnea, but I have very restless sleep.

[Karla]

I have been a singer for most of my life. I’ve sung in all kinds of groups plus a lot of solo work. But recently I found that I just don’t have any volume or breath control and so sadly, I have given up singing with groups. It was very hard and still very hard to live with the idea that I can’t sing with others. I have been diagnosed with Parkinson’s for 12 years but had it much longer than that. I count myself as very blessed that I was able to sing and perform for others until age 80. I think it’s probably time to quit even though Parkinson’s is the main reason. I am very lucky that I still have good tone and quality . I tribute that to good teachers as I was growing up.

[Karla]

I have suddenly, like in the last two months, had trouble with dribbling before I get to where I’m going. I don’t go really often but when I have to, I can’t make it on time it seems. I don’t know who that something to talk to the doctor about or not. when I get there, there’s very little to be done. The urge hits suddenly and even if I get there on time, there is very little.

[Karla]

I was never one to nap but now I find I stumble through the day needing a nap every day. In spite of naps I am so tired in the afternoons I can hardly stand to prepare any dinner. I’m thinking of fixing dinner in the morning and saving it until evening. I go to Rock Steady Boxing 4 times a week but am getting weaker as time goes on.

[Karla]

I have an oura ring that I love. I have had it for several years now and pay a monthly fee that is not very much to get updates. Yet does a wonderful job of telling me how much sleep I get, the quality of sleep I get, keeping track of my activity, keeping my blood pressure and my heart rate records, in fact things that I don’t even think about are kept. It was a little pricey to begin with, I thought, but not as much as a lot of other trackers. It is a ring that I wear day and night and check once a day.

[Karla]

I think my internal thermostat is broken. I have little tolerance for cold and when I get chilled it is very hard to warm back up. Sometimes just curling up in an electric blanket is the only solution I can find. My sweet husband got me a heated vest but I have a hard time keeping batteries charged to heat it up. When I am cold, dystonia takes over and I can hardly move. I hurt all over.

[Karla]

We used to have a house full on Christmas and other holidays. Now I’m very satisfied with only a few family over. I can handle that amount and enjoy the days. Whether it is PD or just age, I don’t really know but I do know I don’t have the energy for the intense holiday prep and activities I once had.

[Karla]

Dry eyes and dry mouth were some of my very first symptoms. That started years before I had any inkling of Parkinson’s. I had a lot of trouble with both and lost many teeth because of the dry mouth. I’ve also scarred my corneas because of the dry eyes. Recently I have had all four of the tear ducts that drain the eyes cauterized. That has made the biggest difference of all.Finally, I can wake up in the morning and actually open my eyes without having to pry them open the insert drops. I still use prescription eyedrops morning and night but they don’t hurt all the time now.

[Karla]

Dry eyes and dry mouth were some of my very first symptoms. That started years before I had any inkling of Parkinson’s. I had a lot of trouble with both and lost many teeth because of the dry mouth. I’ve also scarred my corneas because of the dry eyes. Recently I have had all four of the tear ducts that drain the eyes cauterized. That has made the biggest difference of all.Finally, I can wake up in the morning and actually open my eyes without having to pry them open the insert drops. I still use prescription eyedrops morning and night but they don’t hurt all the time now.

[Karla]

I joined rocksteady boxing in 2015 and they were only four of us in the group that time. The group has not grown to be five different gyms but the original people that I started with a very very dear and near to me. Just last week I attended the funeral for one of those people. She could beat breast cancer that Parkinson’s finally took her. It’s very disturbing to me to see people I love go from Parkinson’s. It makes me feel very helpless to know that I am on a downhill path that has no end except in depth.

[Karla]

The stiffness is terrible! It makes me awkward and off balance. It also causes muscle spasms. I get so exhausted after a short time of activity even though I do intense exercise 3-4 times a week. As time goes on the fatigue is getting worse and worse. I feel like I’m encased in cement and I move like I’m 90, I am 79.

[Karla]

I try not to say much to friends. I don’t want to be a complainer. I do find it a great help and comfort to have my PD Rock Steady Boxing group. We can tell each other what is going on and give advice without feeling we are complaining. They are vital to my well being and we enjoy each other as close friends.

[Karla]

The daily meds in their bottles are in a box on top of the dresser. Then I put the individual pills in a weekly/morning evening box that is refilled weekly. The c/l pills are in a bottle in the bathroom cupboard and in my purse. I need those 4 times a day.

[Karla]

I’m afraid I retired before the diagnosis. I searched for a long time for information on what I was going through and got a number of different diagnoses but none really helped. The search went on for about 15 years with increasing symptoms. Finally, 5 years after retiring early, I was diagnosed with Parkinson’s.

[Karla]

Sometimes I just feel like I’ve been fighting so hard for so long that I’m just tired. I’m 80 years old. Why can’t I just take it easy now. Then I try to tell myself that I don’t need to burden my family and that I need to move. Today my neurologist got after me for my pity-party. I have given up my singing and writing but she told me I can’t do that. So, I guess I’ll keep trying although I no longer have the ability to be on stage.

[Karla]

I seem to be cold all the time. Even if everyone else is too warm, I am cold.

[Karla]

Someone mentioned that to me the other day. I am not familiar with grounding sheets. What are they?

[Karla]

I was diagnosed 10 years ago and started rocksteady boxing eight years ago. It’s been a real blessing in my life. I have friends that understand and friends that are helpful if I need them. Also other friends are helpful when I need them and that is very much appreciated. Life is good and every day has something to look forward to.

[Karla]

I love the boxing and my husband can participate with me. Without the exercise we get at Rock Steady Boxing I do not function well. I’ve tried other forms of exercise but I need the class environment to do well. Besides, where else can you find a group who understands what you are contending with?

[Karla]

Fatigue is my biggest problem now. I have been taking Adderall for quite some time which helped a lot. That and a nap did the trick. I can’t get Adderall now because of the shortage so the doctor gave me Ritilin. It does not work the same and is gone by noon. I exercise hard at least 3 times a week if not 4. I end up going home to lie down afterwards because I just can’t keep going. I don’t know what to do.