POSITIVE with PARKINSONS

        We went to my husband's family reunion in Wisconsin for a few days! It was really nice but my sciatica bothered me more than usual and usual is an 8- 9 pain  on a good day! There was so much walking and my sciatica was killing me! My husband spent all of his teen years working on his uncle's farm in the summer. His cousins still live there. Dan's mom was from Wisconsin.  On the way to the farm, we stopped at the cemetery where Anne's husband Johnny(Dan's cousin) was buried.  He was buried in a beautiful small cemetery next to an old church. Bats were in the rafters!! Lots of fun on the farm!! Adam went for a ride on the ATV and was gone so long!! I wasn't  worried because he told me that he would take off for long walks when he was a little kid!  After awhile Dan and his cousin went out to find Adam.  The vehicle had stalled and Adam was pushing it back!! We all had a big picnic in the barn!  There wer...

     Today was a VERY painful sciatica day.  Yesterday I was in pain  and had an appointment with my pain management doctor.  She thought that my pain was due to the rainy day. It is not raining today and I AM IN TERRIBLE PAIN from sciatica!!  I had to use my walker all day long! I have only had to occasionally use it for the past few weeks but I really need it now. It seems as if the shots don't last very long, maybe two weeks for me and my doc won't give me another one until Sept. I have a CAT scan scheduled for next week so the surgeon can see if I have a fracture in my joint somewhere.  I feel as if my life is now being spent in doctor's offices or going to get blood tests and scans and X-rays done.        I had my speech therapy this morning. I feel as if my voice is louder. I really like my speech therapist, she is so sweet and so adorable.  Speech was my second career choice if I hadn't become a reading specialist....

        Today I had an appointment with my pain management doctor.  I really like her because she really listens to what I say. She also answers all of my questions.  Today was wet and rainy in the morning.  My sciatica was really bothering me and the pain was terrible!!  When I went in to talk to my doc, she told me that the rainy weather was probably affecting my sciatica and give it a few weeks and then get back to her. It stopped raining this afternoon and my pain is the same or worse.  It seems like the injections only work for a few weeks for me. After my next shot, which she won't give to me until September, I will go to the pain management specialist who does radio ablation which burns some of the nerves.  I can only get one more steroid injection for this year so I don't want to get it until I can barely move from the pain!  When I spoke to my neurologist about having no Parkinson's symptoms for almost a week after my stero...

        Last night I was sitting on the couch finishing my book. My two cats kept going over to our gas insert fireplace and just staring into it. Olivia thought she heard fluttering. Eventually the cats went away and Dan fell asleep on the couch and I started typing my blog.  The cats went back over o the fireplace!  YIKES, THERE WAS A BAT IN IT!!!!  I could sort of see the bat's movement but I thought I was safe because it was in the space between the fireplace door and the glass insert.  I just thought it would fly up the chimney and out!! All of a sudden I saw a small black blob come out of the side of the fireplace. It looked like a huge water bug.  The cats ran after it and then I saw the wings. I SCREAMED at Dan to wake up and I kept yelling about the bat!! It started flying around. Dan went to get a paper bag and two cups and he eventually caught it in the two cups. PHEW, I thought!!  That thing was UGULLYYY!! I put tape all arou...

        On Thursday I took Olya to the beach to see her boyfriend Matt and his family.  We all just love them because they are the nicest people ever!! They remind me of my son-in-law Adam's family! I could be friends with them even if  Olya  and Matt didn't go out together. They are easy going, friendly, and kind.  The only damper to the three day visit was that Parkinson's came along with me!! Sciatica came too but I kept taking Tylenol and that kept Sciatic calmer than normal!!  Olya and I stopped at  Acme and got some snacks and some food for the gigantic and delicious breakfast that Matt's dad Ken made for us on Friday morning!!! Olya loves to visit Matt's family but she especially wanted to go to celebrate Matt's birthday with him. (My sister Kathy LOVES breakfast foods so I had to rub it in to her......she kept saying OMG, it sounds fabulous, I love all breakfast foods!)  We stayed in a hotel next to their condo building....

         Today is Olivia's 22nd birthday. Last night I crepe papered her door so she would have to walk through the crepe paper to get out of her room.  I hadn't done that for a few years so she didn't expect it at all!  She had to work today and they had a cake for her and her stylist she worked under gave her $50.00.  She was beyond thrilled!          This morning Parkinson's was right there when I got out of bed. I had to do the 2 and 3 step shuffle to get to the bathroom. I took my pills right away hoping they would kick in as soon as possible.  I took them at 8 am, showered, and got dressed. My speech therapist came at 9 am and I was still shuffling!! I was so annoyed at Parkinson's. I put out two bottles of water before my therapist came because I didn't want her to see me doing the Parkinson's shuffle!!  She is the nicest person ever but it is still embarrassing to shuffle in front of her! After she left,...

        Today, July 17th is Olivia's 22nd birthday. Where did the time go?  We adopted her at age 9 and now she is 22!  What an adventure our lives became after adopting her!!!          Yesterday I had speech therapy in the afternoon. I am in the LOUD program. I feel like I have to shout to get to the decibels that my speech therapist wants me to be at. I think my voice has gotten softer because people have asked me 'WHAT" recently.  So I have to make an effort to speak up but when I do, I feel like I am shouting or really  loud!!! Renee came over and took me out to lunch. Renee had to help me get up from the chair. I couldn't even get up when she was holding the table still!   The waiter asked me "what" when I was ordering. I am just starting to notice that my voice must be a little quieter or softer than before. I spent most of the day practicing my speech lessons and then baking a cake for Olivia. After I b...

       Today I  had an appointment with the neurosurgeon.  He is the same surgeon who did Olivia's spinal fusion about 4 years ago.  He is so  hard to get an appointment with because he is such a well known and respected surgeon who gets excellent results. I had to wait about 3 months to see him and I was cancelled twice and they rescheduled me.  Today was the day!  He read all of my records and asked me a lot of questions and pulled up my MRI test of my spine. He examined me and then we chatted. He showed me exactly where he thought the problem was.  He thought my MRI looked pretty good! The doctor gave me a slip to get a CAT scan. He said that he thinks I have a fracture inside  one of my joints in my spine.  If I  do have a fracture inside one of my spine joints, the only fix is a spinal fusion.  That scares me because I remember how terrible is was for Olivia and she was young, healthy, and thin! It took her ...

      Today I went to my niece Natasha's baby shower.  Of course, Parkinson's trailed along in the car. Dan and I always go to the cemetery first on Sundays.  A few days ago, I was at Walmart and bought a tiny ceramic horse painting kit for Amy's grave. I asked Olya to paint the horses for me and she did. I had forgotten about the horses but she brought them into me this morning all painted. They looked really cute and I know Amy would have loved them if she were alive. We took the painted horses and a solar sunflower light to Amy's grave We sat there and chatted for awhile. I was so sad today because I knew how Amy would have loved to be at Natasha's baby  shower. Dan dropped me off at the shower because I would NEVER have been able to carry the gift bags down my sister's driveway.  Parkinson's was in charge of me today. It seems  that whenever I am upset, Parkinson's becomes much more powerful!!   I got to my sister's and Dan wen...

    For the past two days I have been helping my sister get ready for my niece's baby shower This shower started off as being 10 people and grew to over 40 people!! I did all of the decorations and a lot of the set up!! I tried to put Parkinson's on the back burner because I was busy and had a lot to do in a short period of time.  Parkinson's was right there with me all day but I kept trying to push it away.  Most of the time I was so busy that I forgot I had Parkinson's until I moved around from room to room or just moved period!! I tried to stand up on a chair but Parkinson's reared it's nasty head and refused to let me stand up or even get up on the chair. When I am planning any type of party, I start setting up at least a week in advance. I clean first, and buy and/or order everything I need. I start decorating as soon as I finish cleaning.  My sister is much more of  a last minute type person. My sister started getting ready on Thursday for a shower...

         I still have sciatica!!! I have done almost everything possible to make it less or to go away. I went to a chiropractor, had physical therapy, take Gabapentin, and got steroid injections. NOTHING IS WORKING!!! I am at my wit's end, I just don't know where to turn or what to do.  I never thought I would consider surgery on my back but I think I am finally there. I have lived in pain since April 2018 so that is 15 months. I know that the Parkinson's is here to stay and I can only control some of the effects but now it seems that sciatica is doing the same thing. I think they are becoming one and the same to me. Wherever one is, the other isn't far behind.   I have an appointment with the surgeon who did Olivia's spinal fusion a few years ago. She had such a hard rime and so many complications. That is what really scares me. I'm not afraid to die but I am afraid to live with more pain and/or complications. Once you bury a child, death holds ...

      I usually send Dan food shopping or I take one of the girls with me. Due to my sciatica pain, I can't carry bags that are heavy at all.  I dropped Olivia off at work and then I went into Acme market to send money Western Union to Olya's sister in Ukraine.  Every now and then I send her $100 because they are really poor and I know it helps. While I was waiting in line I looked at the sale paper and thought I would pick up a few things.  I always have a cart with me because I need to lean on it or I need to take my walker in the store. I know it is my issue but I think people stare at me when I use my walker. The few things turned out to be a  shopping cart load! I got two cases of water and lots of other stuff I didn't need. I got lunch meat for the girls and Dan to make sandwiches.  While I was there, I wanted to get vinegar to kill my weeds. My friend Deb sent me directions for a natural week killer that uses white vinegar, Epsom salts, ...

      SPEAK OUT! ®   is a highly effective speech therapy program developed by Parkinson Voice Project.     Yesterday and  Today I had speech therapy. The therapist comes to my home, I like her a lot!  She thinks my perception of how I sound is off.  Everyone's perception is their reality. With Parkinson's, everything is off.  I think she is loud when she is speaking but she says she is using a normal conversational voice. My ears sort of hurt when she spoke in what I considered a loud voice!  I am doing the SPEAK OUT program.  ( SPEAK OUT! ®   is the first step in Parkinson Voice Project’s two-part therapy approach.  SPEAK OUT! ®   typically consists of twelve individual speech therapy sessions conducted by a speech-language pathologist. Together, the patient and the speech-language pathologist work their way through a series of speech, voice, and cognitive exercises outlined in a comprehensive work...

        Today my daughters and I went and got manicures.  Parkinson's got in the car with me, of course but it was quiet while I was driving.  When I got out of the car, Parkinson's immediately got out with me. I wish I could ditch him but he is always there just waiting to trip me up.  We went into the nail salon and I sat down with a manicurist right away. Parkinson's would not let me just sit down, he kept making me feel unbalanced so I felt like a doofus sitting cockeyed on the seat!  The other problem with Mr. Parkinson's is that I never know how rough he will be.  He really tripped me up when I had to walk to the car! I hate when I have to lean forward to go forward but he forced me to do that to be able to walk.  Olya went into Manhattan Bagel where she works and got lunch for herself and Olya, I just wanted a plain bagel.   After the manicures we went home and had lunch.  Parkinson's joined us for lunch, I was off ...

         I thought with great hope that just maybe my Parkinson's symptoms would be on hiatus for a bit. I had my SI Joint Injection on Wed. July 3rd and my Parkinson's symptoms had sort of been in remission or dormant. All day long they have been slowly creeping back. I am back to walking with the two step shuffle, difficulty with writing and major difficulty getting up and down from the couch, chairs, bed, etc.  I want to speak to my neurologist about what happened to me. I can't keep getting steroid injections but perhaps I can take some steroids by mouth .   I googled Parkinson's and oral steroids and found some interesting information. Although viewed as alternative treatment, some docs are prescribing steroids for their Parkinson's patients. Maybe the steroids only mask the symptoms but it feels like a worthwhile treatment.        Parkinson's came back full throttle right now on Monday morning. It is back in charge and as ...

        My Parkinson's symptoms are still sort of quiet right now.  A few people messaged me and told me that steroid shots are anti-inflammatory and that they suppress the brain's reaction to symptoms but they will surely come back.  That is awful but I will take the break!   Others told me that chelation therapy could help clear toxins from the body system and that could reduce Parkinson's symptoms. I added the article title in the next line if anyone wants to read about chelation therapy. I think it is IV infusion of a mixture of vitamins,  other agents, etc.    I will ask my neurologist about it when I see him later in the month. I think he will blow it off to be honest.    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2783151/?fbclid=IwAR3BAyL9G65w2TT9bACkyRT43XMM2x0lqTFLFCWgpxDXHf86hScVC8106zo    I am by NO MEANS whatsoever an expert on Chelation and Parkinson's but I have been reading about it and it make...