Good Morning All !!
I decided to take a break from BLOG writing for a little while. I got a notification from my blog service (don't know who or what that is) I think Google....will be making changes....don't know what they are....
Maybe I should take some time to actually learn how to use the computer and phone as well. I went to Apple last week because I thought I was having a battery problem. I didn't . As the very kind and patient young Apple guy was showing me 'stuff' I could only think "who knew....really ? ....I had no idea....",
In general life is fine. That means as a person with PD. Good days, challenging days, meds that work, meds that don't work. I can drive, which is a huge factor in maintaining independence . Unwavering support from family and friends. Using equipment more such as walkers and canes and grabbers . I move sticks and stones and bricks. I am ok.
If you want you can always write to me for questions and comments at dianegtunis@gmail.com. I give advice and opinions freely. (only when asked !!)
Diane
******* BREAKING NEWS **********
I have a Urinary Tract Infection !!!!!!!!!!! And that is why I have had SO MUCH trouble the last few weeks with the new med I had been taking to alleviate PD problems and symptoms such as dyskinesia and gait and balance issues.After numerous attempts of adjustment my internist (and neurology team) ordered blood work and a urine analysis.
It took a week to get the results. The urine test showed that I have a
UTI which considering I experienced NO SYMPTONS certainly came as a surprise. I have since learned that a UTI can disrupt all PD meds and behaviors. I am on an antibiotic, off the new med (for now) and slowly getting back( PD wise) to where I was in December.
**** VERY IMPORTANT lessons learned. The most important one is that if your neurologist is part of a university practice FORGET reaching them on a weekend or holiday...there will be only 1 neurologist on call for ALL patients who are seen at Georgetown clinics plus anyone coming into the hospital for emergencies. I NOW know better and more effective ways to communicate with my team M-F and that my internist is the go to guy on weekends.
**** PD is complicated and variant and tricky and confusing and stupid and annoying. I never know what to expect. Even though I have been around PD my whole life it seems like everyday brings surprises and challenges.
I am sorry to report that I cannot thank the new med that I have been trying out for the last few weeks.The pills, which were supposed to improve all kind of PD symptoms, did not improve them at all and in fact, unfortunately, made them worse.
In addition to that I had a terrible time reaching my doctor because he is part of Georgetown University and therefore is not available on weekends. It was last Saturday and I waited more that 7 hours for the hospital on call neurologist to return my call.....I was able to reach my primary care physician meantime and he reduced the dosage and when I finally was able to talk to my neurologist Monday we discontinued the drug. The lesson learned this week is that if your neurologist is part of a Movement Disorders practice at a university then best of luck reaching them other than 9 to 5 M-F
I have begun to collect names of other neurologists in private practice should I decide to make a change.
Good news !!! Maybe a little snow this weekend!
Good news !!! Since I don't drink wine anymore and have cut way down on sugar I am at ALMOST my goal weight which is the weight that is on my drivers license !
Good news !!! Since I moved the bird feeders indoors at night no more deer. I also have the feeders higher from the ground and away from trees so the squirrels are having a harder time.
Good news !!! I can still drive, walk, talk, and complain. No recent falls.
And still feeling Whatever !!!!
I have had a very interesting learning experience over the last 10 days .....I have started yet another PD drug. Its supposed to minimize dystonia ( involuntary movements) and other PD symptoms ......there are many. Mine includes losing balance, trouble getting my legs to go forward, not sleeping peacefully, nighttime trips to the bathroom, short term memory loss (did I just take that pill?) , some OCD, anxiety and the list goes on.
Fortunately (not really) some of these issues are age related .I know because my friends of a similar age say the SAME THING !!!
But since I am on a new med my neurologist made me promise to use my walker at all times, in and out of the house, until I become accustomed to it. And this is where I experienced things I had never paid attention to. I have many different walkers, one for each floor, one for the car, and one for walking outside. Now I will pay attention to where I am going, such as a mall, and where their elevators are located. Montgomery Mall has elevators at far ends of the mall, very inconvenient for anyone with wheels. I remember when the mall had an elevator right in the middle of the center.
Another thing I learned is walking with a walker in the neighborhood is tricky. Streets and sidewalks are uneven, and the curbs do not always have a safe way to get up or down.I never noticed that when I walked without a walker.
I'm not trying to complain but I have certainly are more aware of the numerous challenges for those who need wheels to get around.Before now I didn't think about it even though my mother used a walker and wheelchair because it wasn't ME.
Happy 2019 !!! and of course WHATEVER !!!!!!
I'm tired of posting only moans and woeful groans and so today I am writing about happiness!!!! I have always loved denim.....jeans and jackets and purses and shirts and vests and furniture and so now, while it is true that I live in jeans, I now think I can die in jeans......!!??? I have a new cover made of old jeans that I had saved ("stitch T "is the company). It is soft and warm and comfortable and I was thinking it would be a great shroud !!
I bought 2 new squirrel proof bird feeders. I had to reposition the pole and hangers and to do that I needed to remove years and layers of duck tape. Done. Squirrels are challenged. Birds are pleased. So am I.
Thats all. Watching the rain make puddles.Yes I'm weird.
Whatever !!!!!!
This squirrel finds food from a lady who enjoys watching them nibble and scurry and move in a hurry.
A deer enjoys moment of peace .
This tiny little mouse figures out how to get to the birdseed in a closed metal bin and wasn't worried about getting out.
What do these pictures have to
do with PD ?
appreciate friends, family and old ladies .....don't give up .....
relax and breathe ... keep busy.... have goals......
WHATEVER
When I was teaching Head Start we enjoyed a book and song called Today is Monday . It was a repetitive song about food....Monday string beans, Tuesday spaghetti, Wednesday soup, don't remember the rest of it......but sometimes when someone asks me "How are you doing today ?" (especially if they know about my PD) ....the song pops into my head because on any given day my Parkinsons manifestations are different..........like this:
Today is Monday
Today is Monday Monday shaky
Tuesday lethargic
Monday nausea Wednesday steady
Tuesday unbalanced Thursday tired
Wednesday okay Friday happy
Thursday sleeping well Saturday in despair
Friday anxiety Sunday hopeful
Saturday happy
Sunday no falls AND AGAIN
Then it starts again
Monday sleepy Monday frustrated
Tuesday energetic Tuesday stumbling
Wednesday sweating Wednesday funny
Thursday forgetful Thursday thankful
Friday peaceful Friday clear
Saturday calm Saturday serious
Sunday moving rocks Sunday brilliant
The days, weeks , months, years
Always different, always the same
For me Parkinson's is an interesting guessing game.
Diane "whatever"
