[Lucinda]

I do have bouts of anxiety and depression but I think that it contributes to my Parkinson’s rather than being a result of Parkinson’s. I’m not certain that it makes much difference at this point but they are definitely connected. My solution is to listen to encouraging Christian music, to read my King James Bible, and go to church whenever I can.

[Lucinda]

I haven’t officially given up my driver’s license yet but I don’t drive anymore. No one has taken any privileges away from me. I simply don’t feel as comfortable or as confident driving as I once did. I don’t want to wait until I have an accident to realize that I probably shouldn’t be driving. I believe that if we were out somewhere and something happened that my husband couldn’t drive home that God would help me get safely home but I’m not going to try unnecessarily.

[Lucinda]

Because I am the patient, currently, I must go back to my childhood when I would help my great grandma care for my great grandpa. My favorite memories were of playing checkers with him to entertain him. My understanding is that he had won some championships in times past. He didn’t always finish each checkers game with me as he, of course, tired easily, but he never lost a game.

[Lucinda]

I’m beginning to get a little concerned. A couple of weeks ago, when most of the United States was experiencing a heat wave, including my area, my body temperature dropped to 95 degrees. Our air conditioner was on as the outside temperature didn’t get below 85, but the temperature inside our house was 72, if I recall correctly. I know that it was not below 71. After rearranging my blankets, I started warming up and it hasn’t dropped like that since, but it was certainly something that caused me to take note.

[Lucinda]

Yes, My Great-Grandpa Harry William Sanderson died from Parkinson’s Disease a couple of months before I turned 13. I was glad to have known him and to have had the opportunity to help care for him. The experience taught me patience and compassion. Those years also helped to prepare me for my own diagnosis of Parkinson’s so many years later.

[Lucinda]

I’m supposed to see my Neurologist every 3 months but his schedule is so backed up that it ends up being 5 months before I can get the next appointment. I guess it’s that way everywhere. I wish we could move past COVID and what it did to our world. For questions in between visits, there is always the Patient Portal through which I can discuss minor but significant changes and other questions I might have with my doctor and/or nurse.

[Lucinda]

No, I most definitely have never been athletic. My mother who has XLH, was very disappointed that I saw no point in hanging upside-down from the jungle gym when I was under 5. Even though I knew how to read and write simple words, could count to 100, and could tell time on an analog clock the day I started Kindergarten, I was required to take Summer School because I couldn’t jump rope. I frustrated my P.E. teachers all the way through school because I simply could not keep up. Of course, I was accused of being a lazy underachiever. They were all certain that I could accomplish anything if only I would only apply myself. Now that I have been diagnosed with Parkinson’s Disease and have read up on Familial Parkinson’s, I feel vindicated and exonerated.

[Lucinda]

My Great-Grandma Amy is my first Parkinson’s hero. She took care of her husband, my Great-Grandpa Harry who had Parkinson’s. In the 1960s and early 1970s, there was no hospice service. She admitted him into a nursing home at the suggestion of many around her but that only lasted a few weeks. The first time she saw a bed sore which she deemed was because they didn’t get him up enough, she brought him home and cared for him until the end of his natural death.
My second Parkinson’s hero is my husband, Bart who takes excellent care of me. He helps me with whatever I need and I have complete confidence that he will always make decisions that are best for me because he knows what I want and don’t want better than anyone else.

[Lucinda]

Yes, I was taking Rytary which is a type of carbidopa/levodopa that helped with my urinary control among other symptoms. My Neurologist was giving me samples until we could get me set up with a patient assistance program but that Neurologist has retired. My new Neurologist seems to have a problem connecting the medication to the patient, therefore I ran out of Rytary which means that I’m back to having problems. The manufacturers of Rytary are wonderful people and are helping to make the connection so I hope to be better again soon

[Lucinda]

I think it has to do with how our brains sort information when we’re sleeping. I had just discovered that playing games such as block games and others wherein there is sorting and arranging of items, seemed to help reduce the severity of my dreams until a certain day in January when I had been busy paying bills and didn’t take as much time playing games on my phone. That night, I dreamed that my now grown kids were little and the neighborhood we were living in was being violently attacked. I yelled for them to “GET DOWN” as I jumped to cover them. In reality, I had been sleeping on my stomach, as usual; in the process of trying to turn and jump to protect my kids, I was actually jumping up, and over, landing on the corner of my nightstand, resulting in 2 broken ribs. I now make it a priority to take the time to play games involving sorting and arranging things on my phone every day. My sleep still isn’t as sound and unbroken as I would like, but playing on my phone for a bit when I wake up at 2 or 3 in the morning along with a glass of milk helps me go back to sleep until my husband is ready to get up.

[Lucinda]

I have experienced constipation off and on since I was 6 or 7 years old. Different things have helped at different times, leafy green vegetables, and others; fruit helps too, but if I eat too much of those foods, my bowels are too loose. Lately, having ice cream every few days helps.

[Lucinda]

Good for you! Be careful out there!

[Lucinda]

Hello Ally;

I state every year that September starts out sizzling and ends with a burr, referring both to the temperature and also emphasizing the alliteration of the word. This year doesn’t seem to be any different. My concern is the difference in my system to adjust appropriately to the changing weather. I don’t seem to be able to keep an appropriate body temperature in our climate-controlled home. I went to bed shivering as I snuggled into my covers only to awake a few hours later, soaked in sweat. The thermostat had not changed.

[Lucinda]

I wish…

[Lucinda]

Thank you for this question! Yes, I do have a theory about why I have Parkinson’s. My great-grandfather died of Parkinson’s Disease a couple of months before I turned 13. I spent weeks during the summers until that year, helping my great-grandmother as she cared for her husband. I understood early on that I could be genetically predisposed to develop PD. I also have had a number of serious infections, beginning with gastroenteritis with symptoms including a fever high enough that I was delusional. This condition usually lasts a week. I had it twice, back-to-back, and it lasted about 2 weeks both times. In 1997, my appendix ruptured but the hospital could not diagnosis my problem for 18 and a half hours, so that the doctor who saved my life informed me later that he had removed a pint of pus from me and I had a drain for 4 days to remove the rest. I have been septic with E. Coli twice, (in 2012 and 2o14) since then caused both times by a kidney infection that flared up quickly. In both instances, I had been relatively healthy 2 days prior; suddenly fell ill with nausea, headache and fever and was in the hospital, and diagnosed with sepsis all within 48 hours. I have also suffered with ear and sinus infections all my life and once had a severe case of mastoiditis. Partially because I witnessed so many neurological abnormalities throughout my family, I felt compelled in 2014, at the age of 54 to enroll in an online University to earn a Bachelor’s Degree in Cognitive Studies. I graduated Magna Cum Laude in the Spring of 2019. I cannot address all that I learned at this time and in this forum but it included neurological development from in-utero to natural death. I also had some genetic testing done in 2020. Two years later, I received a report that included a variant associated with a genetic condition known as Mucopolysaccharidosis type III (MPS III) which is a challenge to pronounce.
The report made it clear that it was not a diagnosis but simply a possibility that the variant was associated with that condition to alert my doctors to the possibility. As I read the symptoms, I could relate to many and others that I could attribute to siblings and other close family members. Using the privilege I have of access to the online university library where I earned my degree, I studied further and discovered that the variant is also associated with Parkinson’s Disease and confirmed my suspicion that many of the symptoms of the two conditions overlapped. Additionally, I have suffered several significant head injuries. Consequently, by the time I saw a neurologist for my symptoms, I was not surprised by a quick diagnosis of PD. I immediately shared my theory with my neurologist who was nodding her head like a bobble-head doll. No one has confirmed my theory that I was born with MPS III which has now developed into Parkinson’s Disease but no one has even attempted to dissuade me from my theory either.