POSITIVE with PARKINSONS

Mar 31, 2020 My Parkinson's is cooperating with me today! I am happy about that. I was able to walk down the entire flight of steps from the second floor to the first floor without having to stop and sit down on even one of them! I think one reason is that I sleep in, I usually am up several hours during the night but now I just lay in bed and watch TV when I get up and I usually fall back asleep. I keep watching the numbers grow on CNN and it is sad and scary! My scale is going to be thrown out soon if it doesn't start behaving! I have never had problems getting to the kitchen! The donuts are calling my name as I write this blog!! I am eating like a horse! My sister lost five pounds and I gained four pounds! I ordered a huge amount of groceries from Wegman's to be delivered on April 4th. I didn't know that Wegman's would deliver to me because I thought i lived too far from the store. But my friend Bettina, who lives close to me has her food delivered from there!...

Mar. 29, 2020 I could not sleep last night, I am sure it is from my PD. Ever since I have had PD, I have trouble sleeping now and then. I need to do something to help others. I decided that every hour that I remember that I am going to pray for the affected Covid 19 patients in a state. I will try to remember to say two prayers per hour. If anyone wants to help, please tell me what state you want to pray for. I am starting with NY because they have so many sick peop le. Since I was awake from 3 a m this morning, I got up at 6:30, got a quick shower and dressed and then I went to Acme. How could Acme be so crowded at that hour? I usually take my PD meds at 8:30 or 9 but I had to take half of them early or I wouldn't have been able to walk around the store! I got there about 7:15. I did get 8 rolls of toilet paper!! Our delivered order from yesterday was missing so many items. This morning I got milk, eggs, bread, bagels and donuts! Dan is right.....It IS about the food! My frie...

Mar 28th I can't post my blog to Facebook anymore. The message keeps saying that my blog was reported for violations of facebook policy. I have no idea what policy I ever broke! I am tired of writing to facebook about it so I am only posting on my own page and on the facebook group I run for PD! My Sciatica is back with a vengeance but somehow it is not realty bothering me emotionally. it just is what it is! I am worried about my daughter who is a PA and work s in an ER. That is the only emotional thing I can deal with right now The workers are tired, worn out and do NOT have enough supplies. My DIL Katarina is sewing some masks for Renee and for Olivia and Olya. My friend Leslie ordered 75 paper masks for Renee, at least she can keep changing them! I got an email about ordering n 95 masks, it might just be a scam but I ordered a set of 5 for Renee! Today my online food order from Acme should be arriving. As Dan always says, it is ABOUT THE FOOD!! Olivia and Olya added a to...

           Today I actually did exercise!  I watched a few BIG PD exercises on youtube and then I did them, I had to watch a few times because I just couldn't get my brain and my body to coordinate!   I felt that I did something worthwhile instead of just cleaning out a cabinet again!! Yesterday I cleaned and organized like crazy!! My friend Debbie her posted photos of beautifully organized shelves so it spurned me onto cleaning!! I cleaned out under my kitchen sink, I have enough sponges to clean the world!! After I cleaned it out, I just could not get up. I stayed there for awhile and then Olivia came downstairs and I asked her to get me a chair. I still could not get up!! I had to crawl out to the family room and then get up by grabbing onto the chair!!  sometimes forget that I can't do the things I use to do so easily!!         Today the girls were down in the basement doing crafts so I went down and joined them....

       I think that many people who have PD already are use to not going out as much as they once did!   For me, my social life has been a bit restricted since I got my diagnosis and even before that because of how I felt.  So perhaps PD people will not feel as bad as others who are not use to being restricted.  I am also not use to feeling great everyday, many days I feel good, but many days I feel crappy and off balance.  And I would have stayed home on those days!   I ordered food online to be delivered next weekend so we most definitely won't starve.  We have a family member who is in isolation and has been exposed to the virus. She works in the city and I really hope she is going to be OK.        Today I went food shopping at 8 a m. People are just crazy out there!! Still no toilet paper, no disinfecting wipes, and no hand sanitizer!  I have enough to get buy for another week or two, I think!...

       This scanning electron microscope image shows SARS-CoV-2 (round magenta objects), also known as COVID-19, emerging from the surface of cells cultured in the lab        I think that many people who have PD already are use to not going out as much as they once did!   For me, my social life has been a bit restricted since I got my diagnosis and even before that because of how I felt.  So perhaps PD people will not feel as bad as others who are not use to being restricted.  I am also not use to feeling great everyday, many days I feel good, but many days I feel crappy and off balance.  And I would have stayed home on those days!   I ordered food online to be delivered next weekend so we most definitely won't starve.  We have a family member who is in isolation and has been exposed to the virus. She works in the city and I really hope she is going to be OK.        Today I went food s...

        I know we all need to stay home and away from others for our own good as well as for the good of others.  But I am going stir crazy!! I am a social person and I like to see and be with my friends! My PD is actually acting very well!  My sciatica is bothering me, probably because i am sitting too much!! I am sleeping better at night, not sure why!  But I have no complaints about it!           Also, I decided to order food online. I am thinking that this is not going to be over in 14 days. I think we are in it for the long haul!! I just wish we had a more competent and honest commander-in-chief! Dan and I went to the cemetery this morning as we usually do. I wasn't sure if it was going to be open or not. There was a group of people walking together but staying socially distant apart!!  I told Dan that I didn't want him to go to WAWA anymore to get coffee  There are always too many people there touching ...

              Today I got up early and went food shopping because according to my daughters there is NO FOOD in our house!  I think there's tons of food here!  The pantry is full to bursting and the fridge is full!  They meant snack foods, I am sure.  I went food shopping at 7:30 am and the store was packed.  It was supposed to be for seniors, disabled, pregnant and that was it. There are some mighty young looking seniors out there in the world!!  There is no one to ban anyone from coming in the store. There were only a few packages of toilet paper and there was a limit of one per person.  One woman had about 7 packages. She told the checkout woman that she was shopping for her neighbors.  While I was there,  the meat shelves, except for chicken breasts, were empty.  Twice they put out a few packages of ground beef and it was scooped up immediately, one woman took 4 packages and they only put out 6....

           Today I listened to the Michael J Fox Foundation webinar on PD and Coronavirus!   I really didn't learn anything new.  We are not more susceptible to the virus because we have PD. There is no evidence of PD patients having an increased risk of contracting the disease!  But we can get sicker than others if we have underlying medical conditions. Any infection can worsen the symptom so we could have more :off" times and it could be more difficult for us to move.  We also need to check with our docs because some cough meds may interact with Parkinson's drugs.  Anxiety, often a PD issue, can worsen during stressful times.          I slept really well last night   I always feel better when I get a good night's sleep!  This morning I tried to do some of the "BIG" exercises for PD but I couldn't remember a lot of them. I only learned a few of them from my PT. I think I will check ...

             This Coronavirus is new for all of us. In our lifetime, we have never dealt with this type of enemy.  I know it is not a good thing to be obsessed with the news but it is difficult to turn away when there could be new info.  Personally, I think Trump downplayed it and referred to it as a hoax and now we are playing catch-up.   He says that he wants everyone to remain calm, easy for him to say! He knows that he will get a bed in a hospital and he and his family will get ventilators if needed. That is not true for the rest of us if the virus spreads and spreads!          My PD is not as crazy as it has been.  My balance is never great but it isn't going wacky right now!  I didn't do any two or three step shuffles today and that makes it a good day!!  My appetite is good, actually it is too good!  I slept for a few hour straight last night and I always feel better with PD w...

         My PD is going crazy!! It is probably from the stress of watching TV and being obsessed with  the Coronavirus!  I finally put on reruns of the Dr. Phil show!   I still remember some of the old episodes.  I also am writing a novel. I am almost finished! If anyone wants to read it, it is titled Genetica and it is on WATTPAD.com  It definitely has kept me busy. I write for a few hours everyday.  I have had good feedback so if you need something to do, give it a try!          I had trouble again sleeping last night! I slept from 11 pm to 1 am and then I was wide awake until I finally fell asleep about 4 a m. I slept until 9:30! I would like to check in with my neurologist but his office message says to leave a message. I don't want to leave a message, I just want to ask  him if I can increase my Carbidopa- Levodopa. Right now I take 1.5 (25-100) tablets three times per day.  I wonder ...

        I did not sleep for more than one hour last night!  I just stared at the ceiling for hours and hours. I don't know why I couldn't fall asleep. I was certainly tired. I think I should make sure that I exercise everyday.   Last night I was completely off balance.  I could barely walk to  the bathroom with my walker! I cancelled my OT and PT this week.  Actually the OT cancelled me for today because her daughter's daycare is closed.  I am going to do the self containment for the next 14 days. My daughters are out and about. I told them that I didn't want them to go anywhere, especially if there were lots of people where they go.  They supposedly went for  a walk with Olivia's boyfriend and then they went to TJ Maxx.  I didn't know they were going shopping too! They are 21 and 22 so they really have very little risk if they even catch the disease. But if they bring it home to Dan and I, we are goners!  We bot...

        We went to Universal studios for a week. We kept debating because of the corona virus but we had paid for it so we went.  There were tons of people there so I don't think anyone had cancelled their plans for this past week. We washed our hands and sanitized like crazy! They had hand sanitizers everywhere!  Dan wanted me to rent a scooter so I didn't have to walk as much but I insisted on walking. I know that I am supposed to be moving and exercising daily.  I was a bit off balance but I kept on walking. I kept telling myself to swing my arms and put my shoulders back!  Sometimes I chose NOT to listen to myself!! Dan decided to get fast passes for us because the lines were so long!  Fast passes at Universal are not the same as at Disney.  The cost is $160.00 per day per person or $250.00 per person for three days!  So that was an extra$1,000.00 we didn't plan to spend but it really was so worth it.  Sciatica ...

        Today I am feeling better. My pain level has decreased. Now I am worried about the coronavirus.  We are going to Universal Studios today.  I am worried about the train. I have several packs of plastic gloves and I am going to wear them. I also have microbial soap and lots of hand sanitizer.  The girls think I am stupid to be taking plastic gloves to wear, I think it is better to be as safe as possible.  ANd easy for them to not be worried, they are both young and healthy! I found the info below online.  ANd it scares me!!  Try to stay healthy everyone!! Overall, the data coming out of China suggest that older people and people with underlying health conditions "were about twice as likely to develop serious outcomes [of COVID-19] versus otherwise younger, healthier people," said  Dr. Nancy Messonnier , director of the National Center for Immunization and Respiratory Diseases at the Centers for Disease Control and Prev...

        I have been packing for the last few days because we are going away for a week.   I am a little scared to go anywhere because of the coronavirus!  Dan says he figures we are all going to get it so why worry about it?  He is nuts, I don't want to get it. I think it is a death sentence for anyone over 60 and especially if the person has any medical issues.  I have no idea if PD people are at more risk or not.   Yesterday Olya and I stopped at a local CVS and there was not a drop of hand sanitizer to be found! Fortunately I have a huge bottle in our downstairs bathroom and Olivia has several of those small travel size sanitizers!  I purchased several bottles of sanitizing soaps so I hope that helps. At  $14.99 per bottle, I sure hope they are effective.         Dan and Olya went out to buy candy and magazines for the trip.  Later Dan and I went to the cemetery and then we stopped at Rite A...

        Today an occupational therapist came to my house.  She was so sweet.       Most of the time she spent assessing me and asking me questions. I had to stand on one foot with my eyes closed. I could do that for about 2 seconds.  I had to put pegs into holes and then take them out while being timed.I had o read words and numbers and be timed. Those tests I did fine in because I am  an avid reader and have been most of my life.   Liz is going to do two days per week of the LSVT BIG Program and my PT Emily will do the other two days. They will come to my house and do the BIG exercises with me.  Then i am supposed to repeat them later in the day.  While they do the exercises they also include a cognitive task.  For example, I had to walk as fast as possible from one end of the room to the other by counting backwards by fives, starting with 100!  The second time she tested me, I had to sit up and do...

        I still have so much pain. I am walking with a limp!  I called my physical therapist yesterday and wanted to cancel today's session.  She called me back and wanted to see me. She thought that she could massage my muscle.  So I said OK.  I went to chair yoga earlier in the day. And I just love that class. The stretches make me feel so good!  When my PT came, I still had the same pain.  She massaged me a little and showed me some stretches to do!  I will practice the stretches if I am able to do them without too much pain.  Later in the day I went to get my nails done.  Sitting in the chair for about 50 minutes really hurt my back.  Whenever I am in pain, my Parkinson's seems to act up like crazy!  I had so much trouble walking ad keeping my balance today. Dan picked up Olya from school today.  She and Olivia were sitting on my bed chatting with me while I was getting undressed.  Then I went ove...

BLOG POST 3/4/20 I am still in so much pain. The pain started on Mon after I worked with the PT intern. I was fine doing the LSVT BIG exercises with my physical therapist. Then I got down on my mat and the intern was stretching out my leg and something painful happened. I can barely walk, I have to use my walker. I am upset because since Jan. I have been feeling so much better. My pain level was a 4 out of a 10 and now it is back to a 10. I forgot how awful it was to  live 24/7 with total pain. Yesterday I went to the drumming class with my sister but I really watched because the pain was too excruciating to participate. I didn't leave the house today. I am hoping that resting my back and my leg will help....it hasn't helped yet!I am planning to try to go to chair yoga tomorrow. I am not sure if I should to be moving around or just resting my back. Olya will be home for spring break tomorrow! Dan is going to pick her up and they'll watch trains for awhile and then come home...

BLOG post 3/2/2020 Dental Visit and PT PAIN!! Today I got up early and went for my dental appointment to get my teeth cleaned. I have had the same dentist since I was 20 so I know him and his staff quite well! They came to Amy's funeral. They all kept telling me how good I looked. I think it was because I didn't have my walker with me. When I got up from the chair, I started to fall over and my dentist grabbed my arm. He said to me "Use your walker!" I told him that I use  it when I have to walk long distance but I try not to use it when I have a short distance to walk. He said, "You can still fall from walking a short distance!! And he is correct! After I got home and ate lunch, I got ready for my in home PT! For the last few days, I would say that my pain was a 4 out of 10. I am thrilled being a 4!! I first worked with Emily and I mirrored her movements. My pain level stayed about the same. The last ten minutes I worked with her intern. She was stretching my...