[Karla Burkhart]

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 Burkhart]

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 Burkhart]

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 Burkhart]

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 Burkhart]

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 Burkhart]

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 Burkhart]

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 Burkhart]

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 Burkhart]

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 Burkhart]

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 Burkhart]

Sometimes I do and sometimes I don’t. I’ve learned with this disease that every day is different. I don’t have leakage but sometimes when I have to go it is RIGHT NOW!

 

[Karla Burkhart]

They are better than nothing but just barely. Plus, I get charged for them the same.

[Karla Burkhart]

I am following your questioning, mostly because I have never heard of this. I don’t think it is available in the U.S.

[Karla Burkhart]

I feel that no matter what circumstances we may find in life, in sickness or health, humor is a vital part of being a useful human being who is able to see life in proper perspective. Without humor we can fall apart at the slightest thing. I never thought life would bring me something as difficult as Parkinson’s but it could always be worse.

[Karla Burkhart]

Boxing has done more to keep me moving than any other activity. I box three times a week and really suffer when I’m unable to go. I have been boxing for almost 7 years. I also combine yoga with boxing because, unlike many people, I don’t have much trouble with tremors but I have a lot of trouble with stiffness.

[Karla Burkhart]

I have always been very active and loved hiking and walking. I have been having an increasingly difficult time with stiffness. At times I feel like the tin man without an oil can. I can no longer do many of the activities I enjoy. I retired early from teaching elementary school not knowing what the problem was but knowing I was too awkward and off balance to continue. It was 5 years later I was diagnosed.

[Karla Burkhart]

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 Burkhart]

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.

[Karla Burkhart]

If at all possible, I spend as much time as possible outside. I just feel better with sunlight. I wear sunscreen year-round because I burn easily and I’ve had enough cancer spots removed for a lifetime.

[Karla Burkhart]

I find that plenty of water daily is vital as is lots of exercise. My biggest weapon against constipation is something called “My Miracle Detox. It is either a tea you mix up and drink one dose daily or it is capsules that you take one per day. It contains simple herbs–malva leaves, holy thistle and blessed thistle, marshmallow root and leaves, persimmon leaves, ginger and chamomile. There is nothing that causes trouble and seems too good to be true but skipping a day makes my life miserable. I get by mail–My Miracle Tea, LLC, P.O. Box 341, Draper, Utah, 84020. Phone is 571-643-9295. My husband even uses it.

[Karla Burkhart]

Most of the time it energizes me but if I go tired, I am even more tired when finished.

[Karla Burkhart]

Sandy, Utah

[Karla Burkhart]

Singing has been a great help for me. It not only keeps my speaking voice strong but also my breathing and abdominal muscles. It has been a large part of my life since I was 12. I have sung with a number of groups over the years—some professional, some not.

[Karla Burkhart]

I have been a singer most of my life and I still sing. I had to have some voice therapy a couple of years ago to help but I still sing. I can no longer play the piano so singing is my lifeline.