POSITIVE with PARKINSONS

        My husband grew up going camping.            Personally, I prefer the Hilton with room service but I have come to enjoy camping because I love the outdoors. We have a pop up camper because there is absolutely positively NO WAY I would sleep in a tent.  And that was my rule over 20 years ago!  Now that I have Parkinson's there is NO WAY I could manage in a tent.  Our camper is heated,  air conditioned and the mattresses are thick and comfy.  We have a small portable toilet that we only use at night.  Actually only Olya and I use it because Dan and Olivia don't want to clean it!  First we are going to my friend's 60th birthday party and then we will leave from her house. I would prefer to leave earlier because it is difficult to set up if it gets dark but she is a good friend and always comes when we invite her. Olivia's boyfriend Frankie is also coming over night camping so we will have to bri...

           I never go in our pool unless the temperature is in the high eighties and the pool water is heated! Yesterday my daughter Olya wanted me to swim with her so I said OK.  It was really hot, probably high eighties so I figured that the heated pool and the hot sun would be good for me to go in the pool!!  I went down the pool steps and had a hard time but I hung in there!  Then I got on a float and all heck broke loose!! I have no balance at all so I flipped over on the float and went right in the water! I didn't expect that to happen but as I said, I have no balance!!  I should be on America's funniest home videos! Today Olya and I went to T J Maxx to get new floats. I wanted one that I could sit on because the laying down floats are not for me any more!! I couldn't really find what I wanted. I went into Home Goods and found one that I thought might be OK. I got a huge tube and I'll see how that does but I think I still need o...

         I have had macular degeneration for almost 20 years.  (M acular degeneration is damage to the macula -- a small part of the retina that maintains the center field of vision. As this disease progresses, images in this area can appear dark, blurry or distorted. Limited treatments are available).    I can still see fine except not as well at night. I have had about 8 or 9 shots in my eyes because my retina occasionally bleeds and the shots stop the bleeding.  It is so scary when you have a needle heading for and then entering your eye and you know it has to stay open.  They put an eye  clasp to keep your eye open  but that hasn't usually worked for me so a technician needs to hold it open because my instant reflex is to keep it closed. You actually feel ok after you get it a few times. I have not had a shot in over a year and I am so thankful for that.  Parkinson's disease can affect the eyes.  I don't know...

                    Today I went shopping for a new bathing suit in the morning!! I have to get a suit with a lot of room because there is a lot of girl to fit in it!!!! I went into the dressing room and it was a fiasco!  I can't stand anymore to try on clothes.  I kept losing my balance.  I sat down and it took me so long to get my legs into the bottom of the suit!  I actually have to lift each leg to put it into pants or shorts or whatever I am wearing or trying on. My husband has an SUV and I have to try to climb in by lifting my left leg and then he pulls me in once I get my butt on the seat!! I tried on one suit and it fit and I decided to buy it The thought of dressing again and then going out to get another suit and getting undressed again and then having to lift my legs into a different suit was totally overwhelming. I didn't even look at the price of the bathing suit! And it wasn't even on sale! I just wa...

       My Parkinson's symptoms seem to be different almost everyday. Some days I am dog tired and other days I seem to have some energy.  It is difficult to make plans too far in advance because I never know what my Parkinson's will be like on any given day.  My worst Parkinson's symptoms are being off balance and overwhelmingly sleepy!!  I don't know if it is a Parkinson's symptom or  not but I now have such vivid and bizarre dreams! Perhaps it is the liquid medical marijuana that I take at night to help me sleep!! My sciatica,  however, seems to stay the same. It is just pain all of the time unless I take Tylenol or a muscle relaxer. I have spoken to several people who have Parkinson's and many also have sciatica. I asked the doc this morning and he said there is no corelation.   Today I saw a new neurologist at a city hospital.  He diagnosed me with Akinetic-rigid Parkinson's.  He told me that there are two diffe...

  I have terrible, painful sciatica and I have Parkinson's. I don't know which one started first or if they started together! I don't know which one is worse!  My Parkinson's leaves me off balance and I need to use a walker a lot! However, my sciatica is   so painful.  I think both are equally as terrible! I thought I had sciatica first, I was diagnosed with Parkinson's in Jan of this year but I think I had it for the year before. My sciatica started in April 2018.     I have spoken to several people online that also have Parkinson's and sciatica. All of my docs say there is no correlation but I think there has to be. Now I have been told that my sciatica could really be spinal stenosis or joint inflammation.   I just don't know where to turn. Geez, there are too many things wrong with me and no definitive answer except that I have Parkinson's.!! Today I had an online consultation with Dean Volk!  He is a physical therapist ...

     Last night I went to GAY BINGO with my friend Priscilla. I had never been to a GAY BINGO game. The proceeds support AIDS victims and helps to pay rent, medicines, etc.  It was quite an event. I was the ONLY person there who had a walker! Fortunately it was a good night for me and I was able to park it in the corner.  Priscilla and I and her friend sat at a table with really nice people. The gay couple across from us explained things that we didn't understand. There were quite a few really dressed up gay people who performed dances and walked around collecting money for AIDS victims.  I didn't even think about Parkinson's or my sciatica while I was there!  While we were waiting for the game to start, I looked over and saw my niece Erica and her best friend Jennie!! They were with another friend and it was also their first time at GAY BINGO!!  They couldn't sit with us because they had other assigned seats and our table was full!! They di...

           My daughter Olya turned 21 this month.  She wanted to go to the casino so we took her last night.  We took her to show her how fast you can lose money there! We gave her $20 and Dan and I each had $20 to play.   Dan and I are not much of gamblers. We go to the casino every once in awhile. After we lose $20 or $30 we get  a soda and we leave.  Dan played half of his money and gave the rest to Olya.  She wanted to play A LOT of different machines.  Olya was all business when she was playing!   I had my walker with me because there was so much walking to do just to get to the slot machines from the parking garage!  I usually take my aluminum lightweight walker because it is easier for Dan to lift out of the car. I prefer my walker with the cart! Olya would play a few dollars on a machine and then want to move to another machine. I think she knew that she wouldn't be going to the casino much if ...

     I am so tired of having Parkinson's and it is only a few months. I hate that I walk leaning forward and having to hold onto furniture and counters. I hate that I need to remember to take my meds or my symptoms will be more apparent.  I hate that I have to take a walker everywhere I go. And I hate that I have difficulty getting up and down off of furniture and out of bed in the morning!  I also hate that my gait freezes now and then and/or my entire body freezes and I feel like a stupid moron when it happens. I hate that I have to have a death grip on the banister when I go up and down stairs. I hate that my life is dependent on Parkinson's doctor and pain management doctor visits and PT.  I can't stand long and I hate that, I walk slowly and I can't stand that either. That all being said I now am so so, so sleepy and tired all of the time. I have fallen asleep sitting up and I was never even able to do that before.  And when I fall asleep during t...

           The other night we had our usual bereaved parent meeting. I had found an article about gratitude and printed it out. I first talked about doing a thankfulness blog last year for 365 days. Everyday I wrote about something that I was grateful for. It could have been something as simple as watching the beautiful birds in my backyard to something as funny as losing big chunks of my hair from a new conditioner my daughter told me to use or as serious as being thankful that my daughter, who was in a terrible car accident, the air bags all deployed,  walked away without a scratch!  Each person in the group was supposed to discuss something that they are grateful for in their lives. I brought a few blog posts from last year to read.  Blogging about gratefulness really changed the entire way that I look at life. I now notice more of the positive things in my life. I still will be sad everyday because my 18 year old daughter died but that do...

     Today I was dismissed form the PT program. My physical therapist told me that I had NO improvement.  I did the exercises she gave me everyday. I might have missed a day or two due to pain but that was it. I did the exercises religiously!! She said that until I get the sciatica or joint pain resolved that the exercises can't help me.  She said that she felt bad that I didn't get any improvement and that my pain got even worse. I wish it would have worked at least a little! I am still in so much pain.  I asked the PA I saw yesterday what type of medication was in the SI Joint injection I got last month. . She told me that it is called Depo Medrol injection     Depo - Medrol  is a  steroid  that prevents the release of substances in the body that cause inflammation.  Methylprednisolone is used to treat pain and swelling that occurs with arthritis and other joint disorders. This medication may also be used to treat v...

         I am trying to live my life as normal  to possible that I can! I try to ignore the Parkinson's symptoms whenever I can/ My sciatica pain is so much better since my SI joint injection. I am scheduled for another shot next month. I had to see the PA today because my pain management  doc had a death in her family.  I really like the PA,  she explains everything in detail and then I can come home and google it and find out all the info I want to know!  She was telling me about a radio frequency SI Joint procedure. They don't do that at my doc's location but they know a doctor in Willow Grove who specializes in the technique. I can only get three more steroid injections so I am hoping that I can be a candidate for this procedure if the shots don't really lessen my pain.         Today I went to a chair yoga class. Most of the people are quite able to do all of the modified yoga poses.  My Parkinson's made me ...

        On Fri. night I heard a rustling sound inside our gas fireplace insert. Everyone had gone to bed! I looked at the side of the insert and an animal arm or leg was crawling up it outside of the metal insert. It didn't look like a mouse leg or arm but I yelled at it, the animal disappeared. I went to get a flashlight but the noise had stopped. I was sort of spooked by it so I went to bed. The hand or foot was black and furry but bigger than a mouse hand. It wasn't in the insert, it was between the frame and the fireplace wall. There is a  small tiny space between the tile and the edge of the frame, that is where the foot came out and went up the wall. This is the foot that I saw!!! It was black and furry! I told Dan about it the next day and he sort of just shrugged it off. Last night I was getting ready for bed and I heard Olya scream, and slam her bedroom door as she ran out into the hallway!  She was yelling that there was a bat in her room!...