POSITIVE with PARKINSONS

I am so thankful for our gas insert because I am so cold all of the time! http://feeds.feedburner.com/PositiveWithParkinsons FOLLOW THE LINK ABOVE TO FOLLOW THIS BLOG  I am going to stop posting on Facebook sites in a few weeks so please copy and paste the link above if you want to read my blog and are not my friend on Facebook! I will still post on my own Facebook page and on People with Parkinsons because I am the Administrator of that page.  I have never been a particularly warm person but since my diagnosis last year, I am always freezing. I have an electric blanket that I use every night and during the day I run the gas fireplace almost all day and into the night.  I always have a sweater on and when I leave the house, I need to wear a warm coat, scarf, hat and gloves. I remotely start my car in the garage because it is just to cold for me to ride in immediately, I have to warm it up first.  I don't like cold drinks anymore, I now prefer room temperature wat

        I am in the early stages of Parkinson's.  I don't have tremors or shaking yet. However, I have severe balance issues and I have severe problems with my gait and with my legs freezing in place. I don't have tremors but I do have the pitch forward. I have the shuffling gait, am unbalanced, and walk in small steps. I have masked facial expression, rigidity, stooped posture, and reduced arm swinging. Yesterday the phlebotomist at the blood bank was annoyed that I took so long to get up when she called my name.  Today I had an appointment with my oncologist. I had breast cancer about 9 years ago so I have to see an oncologist once or twice a year.  I went over all of my meds with the NP before the doc came in.  After he came in, he looked over my chart. Then he said to me, "Are you still taking the Sinemet?" I said , of course I am, I still have Parkinson's! I wanted to say to him  ...Is there a cure I wasn't told about?  Last time I was

     I have always been proud of my brain and my knowledge! I easily did very well in school. I did well on tests and had a fabulous memory! I never found learning or remembering difficult at all!  I had great short term and long term recall. My body easily moved the way I wanted it to. I could make a plan, execute it quickly and be done with it. I could get up in the morning, shower, put on make-up, get dressed and be out the door in less than 30 minutes!!   Now I make a plan, have to really think it through, then it takes me three times as long because my movements are so slow.  I feel angry at my brain. I want my old brain back. I want my life back the way it was. I want to get out of bed and not have to stand there for a few minutes to gain my balance and to make sure I have feeling in my feet.  I want Parkinson's to take a hike and go away!! I want my memory back and I want to be able to move quickly and not to have sciatica pain.  Why, oh why, don't we appreciate good hea

        Thank you to everyone who gives me feedback on my blog, especially about their experiences with medications. I almost always get weird side effects from medications so it is especially helpful to me to know what to look out for!  This PD Journey has not been fun but it has proven to me that there are so many wonderful people in the world.  So many people are willing to share their personal medical issues. I mean if you can discuss constipation with people, you know that they're people who want to get and share info with others!         Today I am going out to lunch with two of my best friends!  I am so excited! I even put on make-up!  The Topiramate medication that I am taking for Sciatica has decreased my appetite.(That in itself is a miracle because I LOVE food). Almost three years ago, I lost twenty pounds over a year long period by working out and eating better because my daughter Renee was getting married. Since that time I have put back on about 8-10 pounds and I ha

https://www.youtube.com/watch?v=OdarTCcCnjM&feature=share&fbclid=IwAR11oSZmzh3YEQmh-er6eZjE5aAu6yZbmGZgC-pd83TkhsMBLAWH5Rh-J1g      I have no idea whether or not this is a valid video or if it is fake. But if it is real, I would love to have the procedure done. I am in so much pain today.  It is the spinal stenosis that is causing my sciatica. I would LOVE to get rid of just 50% of my pain. It is so hard to live with this constant pain.  My pain management doctor put me on new pain meds. I just started taking it and I have been reading about it and it seems to have terrible side effects. I am going to call him tomorrow because the side effects seem over the top for a pain med. The name of the new pain medicine is Topiramate 25mg tablet.  I have been reading about the drug online and it doesn't say that it is used for pain management.  It also says that it shouldn't be used for people with eye problems and I have Macular Degeneration.  I think I am going to take

         I am having so much difficulty getting up and down from chairs, toilets, couches, beds, etc.  It is not easy getting down but getting up is terrible and it is becoming more and more difficult.  I have to pull and push and grab onto something to get up.  The lower the seat, the more difficult it is to get up. Sometimes I wonder whether or not I'll be able to get up. If I am on the floor, I have to crawl over to a heavy piece of furniture  and grab on to it and try to pull myself up! In bed I sort of have to roll over to the edge of the bed and lie on my stomach and then push myself backwards, then turn around and get up.  It is an ordeal! I may have to get one of the lift chairs if I keep getting worse. I know that my friend with PD had a bed that inclined and moved up and down and that really helped her.  It reminded me of a hospital bed but it was a double size.      I have been looking at some chair lifts and I think I will look into purchasing one.  I was chatt

          Today I am going to try to look at everything in my life that is positive! Normally I post about PD and Sciatica and my issues surrounding them.  I think it is important to take some time and take stock in what is working in my life even though I have those two issues!  I have wonderful family and friends. My sister drove to my house to pick me up to go to the Shiva the other night even though it was in the opposite direction.  My friend Jackie always offers to pick me up for book club or wherever we are going.  And last night I slept for a continuous four hours, woke up, was awake for about an hour and then went back to sleep for four more hours! It was heavenly!! I usually have such bad insomnia so it was so wonderful this morning to not feel sleepy!         When it was Olivia's 18th birthday, the girls in our family and a few friends did a flash mob dance to the song Happy!  Olivia cracked up.  She pulled up to the restaurant and we were all standing outside in

         I know it is important to exercise if you have Parkinson's Disease.  Before I even knew I had Parkinson's, I use to go to the gym 3 times per week and walk on the Treadmill or ride the exercise bikes. When I developed Sciatica, I thought I had pulled a muscle and stopped going., I thought I would feel better in a few days or a week. The pain was so significant that I had to stop going to the gym(that was in April 2018).  Any type of exercise that I did, even PT, only exacerbated my pain. I was diagnosed with PD in Nov of 2018 even though I am certain that I had it many months before my diagnosis. I just attributed all of my issues to Sciatica!         I had planned to get more PT because I knew I would exercise if I did, I am definitely a rules follower! If the PT tells me to do the exercises everyday, I would definitely do them.  My Sciatica is so awful, the pain is just tearing through my hip and down my leg my foot on the left side. I am afraid to start

http://feeds.feedburner.com/PositiveWithParkinsons FOLLOW THE LINK ABOVE TO FOLLOW THIS BLOG I found this diagram when I was searching for info about Sciatica and PD.  I think I have one or more issues with each one of these highlighted areas.  In the Central area, I definitely have Anxiety and Dizziness.  I recently posted about my eyes and how they involuntarily close  during the day and I have to force them to open in the morning.   In the Mouth category, I have a soft voice and some difficulty swallowing.  In the Skin category, I definitely have increased sweating.  In the Lungs category I have difficulty catching my breath some days.  In the Muscular category,  I definitely have weakness and aches and now I am dropping things like crazy!  Definitely in the Intestinal category, I am totally constipated daily unless I eat a banana or take a stool softener.  And in the Systemic category, I have trouble moving or walking, impaired balance, small and difficulty to read handwrit

       PLEASE FOLLOW MY BLOG--I AM Thinking of Making It Private          Last night when I was at my friend's Shiva service, I ran into a woman who I had known from Olivia's cheer leading days.  She was serving the refreshments after the service.We had to take Olivia out of cheering because she had several severely herniated discs and she was in constant pain.  She eventually had a spinal fusion and she is much better now after years of severe pain. Anyway, my friend Leslie has a sister named Stephanie and after I recently saw Stephanie we became Facebook friends. Leslie's and her family lived up the street from me when we were kids! The woman I chatted with last night is also a Facebook friend of Stephanies and I asked her how she knew Stephanie.  They had gone to a private elementary school together!  When Leslie and I became Facebook friends several years ago, her friend Bridget asked her how she knew me. Bridget was the principal of a high school that I had worked a

        Tonight was my friend Dianne's Shiva Service.    My sister called to tell me because she and Dianne were  neighbors.(Shiva is the week-long mourning period in Judaism for first-degree relatives. The ritual is referred to as "sitting shiva" in English. Traditionally, there are five stages of mourning in Judaism. Shiva is considered the third stage, and lasts for seven days. Wikipedia).  I feel so bad for her family, she was such a kind and loving person and family member.  I didn't think I would really know anyone at the service but there were several people I knew.  The caterer was a parent from Olivia and Olya's cheer leading days! Two other band parents(from Joe, Amy and Renee's high school days) were also there. The parent of the boy who was Renee's co-lead in Guys and Dolls in high school was also there.  A dad from Indian Princesses, who had been in the group with Dan and Renee, was also there. And Amy's friend Rachel's parents

        My Sciatica pain is definitely less than it has been.  For almost two years , it was always 8-10+.   But now it is a 5-6 on most days.  Today I had to go to Macy's to return a coat i purchased online. Since I knew I would have to park and walk,  I took two Tylenol and the pain was almost gone for about two hours!  IT WAS WONDERFUL!! I totally had forgotten what it was like to be pain free!!   I am not permitted to take much Tylenol and can never take Aleve or Motrin because I have had Pancreatitis a few times by taking too many over the counter meds.  I am thinking of cancelling the  shot I am scheduled for in my back. I can only get three  shots a year and I don't want to get one until I really need it!         After I returned the coat, I stopped and ordered a pizza for lunch! My friend Priscilla was coming over to help me sort through a box of photos and she generously has offered to scan the photos for me so I can put them on my computer!  I went into Acme to get a

        Last year when I got diagnosed with PD I was nervous because I never knew anyone who had had it. Then my friend told me that her good friend had PD and she was also someone I knew.  Dianne had been my department head at a college where I had taught many years ago and she was also my sister's neighbor. When she found out that I also had PD, she invited me over and gave me so much valuable information.  She invited me to the Rock Steady boxing class that she had joined. I went a few times but had to stop due to my extremely painful Sciatica!  Sadly, Dianne passed away last night due to pancreatic cancer.  I think that she most likely attributed some of her cancer symptoms to PD, such as indigestion, etc. I originally thought all of my PD symptoms were only Sciatica symptoms.  There are no definitive answers when we get diagnosed. We don't know exactly how our disease will progress.  I will never forget how kind Dianne was to me and how she shared all the info she had.  Sh

       It was a snowy day today! I think to myself, gee I am afraid to go out in the snow because I am afraid I will fall because I am off balance from PD.  I can usually tell when I get out of bed in the morning if it will be a bad or OK Parkinson's day.  If I can get out of bed and start walking towards the bathroom WITHOUT holding onto the furniture then it will most likely be a decent PD day.  If I have to sit on the edge of the bed first, and try to bounce up,  and then slowly get up and hold on to the furniture it usually means my balance will be off most of the day.  I usually wake up a few times during the night because I have insomnia. If I get out of bed, I am always wobbly because of my balance issues.  I usually try to just stay in bed and go back to sleep but that rarely happens lately  I have been cleaning out drawers and closets in my bedroom because I would like to move in about a year or so.  I started doing that during the night when I have insomnia. There is j

        Today I went out to breakfast with my friend Amy.  Her kids were in all of the music programs with my older kids so we were band and orchestra and choir parents. Amy is such a nice and good person.  She recently lost her husband.I feel so bad for her, she and her husband were such a loving couple. Amy lost her mom when she was only 15 years old. And now she again is grief stricken. I had made cookies for my friends for Christmas but I didn't get to see Amy so I froze some of the dough and made a few cookies for her yesterday. While we were eating and chatting, I once again forgot all about my Sciatica pain and that I have PD!   This may not sound like big news to others BUT I COULD STAND in the SHOWER for the first time since April 2018!!!  I have had Sciatica since April 2018, almost two years!! I don't know why or how but things are less painful. I have a shower chair that I have used everyday since the end of April 2018 and I had bars installed on the walls. I stil

     I don't know if anyone experiences itching as a side effect of Carbidopa-Levodopa. I sure do!! I am usually OK during the day, I'm a little itchy. However, at night, I am crazy itchy. It has gotten worse. I have generalized itching, it is all over my body from my scalp to my feet. I looked up the side effects and one if them is itching!  I forgot to mention it to my neurologist last time I was there.  Itching is a common side effect of Carbidopa-Levodopa! And it is so annoying! I take a Zyrtec tablet everyday  because of allergies but it doesn't seem to help with the itching.  I found the info below online!  I don't want to take Benadryl because it knocks me out and I spend the day napping! Itching is a symptom we have all experienced. Nevertheless, itching can be difficult for a person to describe to others. While itching symptoms vary, it typically leads to a peculiarly uncomfortable skin sensation. It may feel as if something is crawling on (or i

        Last night, as usual, I woke up to go to the bathroom about 3 a m.  I had such a strange sensation when i got out of bed. My leg was stiff and hurt but it was NOT throbbing! I was sort of scared to stand on it and walk on it. But when I did, I had so much less pain!!!!!!!!! I don't know why, I don't know what I did or didn't do yesterday.  I hope this is finally a sign that things are going in the right direction for once!  I wish I could bottle whatever I did yesterday so I could use it again and again.  Before I went to bed, I spoke online with my friend Laurel.  She has had an ablation and it worked!! She had SI Joint pain just like I have.  So after I get the shot from my pain doc, I may have to move onto another doc who is willing to try the ablation for me.  Maybe I won't even need it if my leg pain continues to lessen. If my sciatica stays the way it is, I would just live with it. My pain today is so tolerable, it is so nice! A 9 a m today, my pain is sti

         Today I went to the pain management doc to see about getting an ablation. I was so so excited! (What kind of idiot gets excited about going to a pain management doctor??) He was my last hope for some major pain relief. The doc said that an ablation is not a fix for my pain because it is my sacroiliac joint that has the most pain.  He said that an ablation wouldn't work for that.  He is going to give me another injection. I said OK because I have nothing to lose at this point.  am fairly certain that some of my blog readers told me that they had an ablation after they had sciatica pain in their sacroiliac joint. I think my friend Laurel told me that she had an ablation for sacroiliac sciatica pain.  I am counting on the shot working but I have had 8 shots already and they only worked for a day or two at most. I am going to research it online and see if other providers think it would work. He said that there were other things we could try if the shot doesn't work. He