Jump to content


  • Content count

  • Joined

  • Last visited

  • Days Won


jb49 last won the day on April 24

jb49 had the most liked content!

Community Reputation

731 Excellent

1 Follower

About jb49

  • Rank

Profile Information

  • Gender
    Not Telling
  • Location
  • Interests
    Garden, horses, painting, talking, family, friends

Recent Profile Visitors

4,161 profile views
  1. jb49

    Good morning!!

    Thankyou, Sean and Em for your concern. Thanks Linda for painting a nice picture of hopmecoming. I think things went well in Toronto. trains, schedules, hotels, restauraunts and such things tire me out. We returned home on Sunday. Monday was a write off. But I think everything is ready for surgery on May 8 to install probes and then on May10 they will install the power pack in my chest and connect the wiring. Today is Tuesday. I will be in the OR 2 weeks from right now. So in the next 2 weeks I will get my suitcase packed, some books picked out to read. Squirrel away some snacks into my backpack, um lots of gum I think. Also I will try to get some of the springtime jobs completed around here. Maybe even get some potatoes planted in the garden. Sadness in Toronto today. A young man for unknown reasons drove a rented van up onto the sidewalk along Yonge street yesterday and killed 10 people and injured many more. I shake my head in disbelief. Be strong and diligent my friends.
  2. jb49

    This & that!

    Hello everyone, Exercise and then exercise some more. Go for a walk to the store instead of driving and take the long way. I always found that my lazy days where I had little activity lead to my most uncomfortable nights. I used to say an hours robust activity was worth a handful of pills. Having said all that, it can be very difficult for some to even get out of bed for a meal. That is the catch 22. you need to excercise to move free, but you have to be able to move to exercise. TAKE CARE. JB
  3. jb49

    Good morning!!

    Hi everyone. We know that you are close Pathfinder. Thanks SoCalGal. After a flurry of phonecalls, head scratching and "waiting to hear", two metal hip replacements that I had done 10 years ago have been deemed safe for the MRI image that I am booked for this weekend. Yesterday I arranged transport, lodging and farmsitting and tomorrow I do a pre op meeting and blood testing and signing on the line for surgery in a couple weeks. Saturday night they put me in the capsule and MRI my head. Concerns were raised over my hips and whether they would perhaps get too warm with a 3T (MRI machines are mostly 1.5 but the new generation of them are upgraded to 3. as I understand them) The technical people reviewing the composition of my inserts have decided that my hips will be far away from my head and therefore safe from overheating. I trust them. I hope that they don't assume I am 6'6 tall or something. I'm a shorty at 5'7 and that shortens the distance. MRIs are strange. I would not be surprised if when the thing stops, and I emerge, I will be stepping onto the surface of the moon. Gotta run, calls to make things to do. later, take care, jb
  4. jb49

    Good morning!!

    Good morning everyone, Linda, I wish al the best for you. As you deserve it! THANKS go out to you Linda and everyone else who follow our lives and care about the outcomes. I am humbled by the concern shown for each other here on this forum. All the best to all of you and I thank each of you. jb
  5. jb49

    Good morning!!

    Good Morning everyone. Hello Mireille, well, as it turns out, things have been accelerated. Get your running shoes on and hang onto your hat I say to myself. I asked my Neurologist last year if he would pass me along to the Toronto Western Hospital for a DBS procedure. After a wait of only about a couple months, I was contacted by Movement Disorder Clinic and was given a date to come to Toronto for an assesment to see if I fit the "Candidate Profile". That first meeting took place in September of last year, 2017. It was a 2 hour test and interview at the clinic by a neurology Resident Doctor. I was not available for a scheduled followup appointment in the fall, and with the Christmas break approaching I was put over into the new year. The next meeting was a 2 day Neurological testing session that took place in January of this year. It also had a testing of my motor skills with no drugs in my system. We stayed at a nearby hotel, I took my regular levodopa at about 7 in the evening and arrived to be tested at about 9 the next morning. After doing the motor tests that you all have done , I was given my regular tablets of levodopa. We waited for them to absorb into my bloodstream to gush out my arteries and back through my veins as my heart pushed the blocks of Dopa into my waiting brain where they were assembled and waited like a bunch of couriers, awaiting thier turn to deliver a message to my muscles. I repeated the motor tests, scored much higher, and that was a good thing. DBS is more effective on candidates who respond well to Levodopa. Later that day, after the extensive brain power testing to establish my cognative ability, or lack thereof, the assessment team told me that I would be discussed at a meeting but I was 95% into the que for DBS. At that time, August was suggested as the date. They would be in touch. And they were with a phone call asking me to attend a meeting with the surgical team in two days to replace an appointment time that another person had to cancel,. That was about March 3. At that time it was thought that the summer would impact the schedule and I should look towards late September, perhaps even October cautioned a resident as I was leaving. Two weeks ago they contacted me with an appointment for an MRI. I wondered why so early and when I enquired about that a week ago, I was told that the surgeon had been alloted more surgery hours, a schedule had been redrawn and could I be available for the DBS on May 8th. I just learned this at the end of last week. I have to go to my family doctor tomorrow for pre admission documentation, to Toronto on Friday for pre op teaching and blood testing, and posssibly an mri on Saturday. It seems a bit sudden now, but it will eliminate a summertime of worrying about it. I have lots of support here for rides to Toronto and help at the farm. The surgeon and his team inspire me with confidence and there is a wonderful Lady in the DBS department at the hospital who has control of the calendar to co ordinate all things. I am getting a Boston Scientific unit with the new style of directional leads which will hopefully allow the programers even tighter control of the stimulations. I am also taking part in a research trial as to the effectiveness of the new directional leads. I am hoping that I get good results, as in a smoothing out of my off and on cycle of drugs. I hope that I can remain still, and calm for the operation. It will be in 2 parts with the leads being installed into the "gray matter" on the 8th of May and the control implanted into my waiting chest 2 days later on the 10th. At that time I guess they will also be pushing the wires under the skin of my neck and between my scalp and skull right up to my new attenaes, still freshly rooted into my brain. That means 2 operations but it will eliminate the 12 hour marathon. I am a little worried about it all. I would be crazy if I wasn't worried some. But I also am happy that this should improve my life, help the doctors learn new skills and methods and hopefully I won't be as drug dependent. Worried a bit yes, but I am approaching this with a positive outlook for treatment of what is proving to be a nasty disease. I gotta get busy here, things to do. Like shovel snow off my steps.! What rotten weather we have had the last 3 days. Be safe everyone, jb
  6. jb49

    Good morning!!

    Em, I felt like giving the James Taylor Carolina song a listen today. I hope I can get it to link up here for others to hear it as well. Tis no wonder that our resident Lady Superhero, Shera, who works by day in Atlanta but resides in her cabin in South Carolina and whoaa? Oh, I just checked that out on a map, and that looks like a lot of driving, maybe I got that wrong. Anyways, this video is very nice to watch and no wonder People enjoy North and South Carolina. Now, if I can make the link work. .https://www.youtube.com/watch?v=4z8lS--AyBU
  7. jb49

    Good morning!!

    Hi Peace, I look forward to reading your posts. I think Elmer Fudd is a little more like "vewy, vewy, quiet". I think that the geese have forward scouts that realize the northern lakes and artic regions ofCanada, where they breed and live for the summer, are still froze up. The forward geese then try to stop other flocks from continuing north and things just backup and get crazy. Like if Chicago's airport closes up in a snow storm. Speaking of which, Southern Ontario has been tied up in a springtime ice storm. My ground is covered with a few inches of ice pellets. Or sleet. The roads are awful and in the Toronto area 500 car accidents were reported to the police yesterday. The weather is as bad today and most flights in and out of Toronto this weekend were cancelled. Uuuugh, .. It is time for me to pull my hat down over my ears, put on parka and boots and do the Parky Shuffle to the barn. The horse is watching the Ktchen windows, knows I am up and Max wants his breakfast. Have a good day everyone. jb
  8. jb49

    Good morning!!

    I knew you would catch that one Em, Freezing rain and sleet here today. Housebound I am, not that there is any shortage of stuff to do in here. uuugh! jb
  9. jb49

    Good morning!!

    Good morning, Last night when I let the dog out for a goodnite whiz, I heard a sound that I have been waiting to hear. The springtime peepers. Little frogs calling out to each other, restablishing relationships interrupted by 4 or five months of Canadian Winter. When springtime is close to arriving the Red Winged Blackbirds arrive and sing rap music, individuals with a song to sing about how happy they are to back to the bullrushes and ponds of the open countryside. The Peepers on the other hand sing in a huge choir in 3 part harmony directed by some Froggy dressed in a tuxedo waving a baton. This year the RW BBs came back during a warm spell on the ill fated advice of some sleepy eyed grounhogs who likely were stunned by the tv cameras and carrot sticks on Feb 2.and have3 froze thier asses off. But the spring peepers have a weather Guru, or some insider information of some sort because they know when true Springtime is about to spring. And there was no frost last night, finally. And this morning the sun was greeted by an air temperature of about +4 cel, Now, don't go planting the garden yet. The peepers will have a short run of warm evenings, and then freeze up again, 3 times in fact. The next thaw will last longer, then a shorter freezeup and then a third frost period maybe covering only a few nights during the full moon in May. Then they begin again with the evening music. Then it will be well into the month of May, and you can put bean seeds into the soil and cutup potatoes into long straight rows. Okay Catchup time: -I was at a funeral last week where the minister read aloud the Munsch book :Love you Forever. -So Cal and Lad, thanks for the different ideas on signature completions. -Linda, hope you are well, thanks for encouragement you give me when I get around to posting. -yes Beaus Mom Dianne, You can dream, please do Girl! What a beautiful generous heart you have. Many people would dream about a garden that produces lots of stuff to store for later use, but you Dianne can't wait to share the product of your garden with everyone else. big hug to you. -LAD I read your blog. You have a very positive outlook. -Dianne. you say that you have anxious moments. I have some some as well. I know that you do too Em, and I am feeling more stress than I want to. Maybe there should be a joke of the day published by Marcia, so that we start the day with a chuckle. I vote Marcia. -My Mom is in a nursing home and she is beginning to have some confused moments where ....actually she isn't confused. It is all very plain to her. At age 89 she slips back to the 1940s and she is a young Lady, boarding in town through the week at a boarding house house with her school mates to attend High School. But why isn't she going back to the farm on the weekends like she always did. And why do people around her go home on weekends but they aren't back on Monday. And then she will come back to year 2018, and everything is back to normal, and she isnt so happy being there but understands that this is where she can be best looked after. My sisters Sue and Jane visit her often and us 4 boys do as well, and the place is starting to bother me somewhat because sometimes I see me being helped into the car to go to Easter Dinner, for a drive, dr appointments but I don't want to live at the Manor and I am not planning to: Yet it is "the best spot for you Mom" and she receives wonderful care and sees lots of people. When asked though who was in today Mom often has forgotten aslready. I am not dwelling on my future, but I wish Mom was a bit happier with her situation, but I understand her thinking. -Swamper, The dragon is a good ideal. I should investigate. I could then swamp the Swamper in the swamp with reams of paper articulating my life and thoughts there of until you recall the dragon lest you get buried in my dictations. uum, stilla good idea??? -Shera , I still will send you snow if you want it. Your love for your cabin is apparent as your love for where it is situated. I have a close cousin who just yesterday told me he really enjoys travelling to Carolina. Do you like that " Carolina in my mind' song by Neil Young.(I think it is) And finally, the big thing coming up for me is DBS. The date jiggles around like Jello on a spoon. But it will happen soon, Can I sing this to a tune? With the peeping tree frogs to the Moon? With chords played by the dog on an electric Bassoon? I best end this before it gets all Cat in the Hatish. Nope, it is escapism, I think. I'm a little bit worried by the upcoming dbs surgery so I divert my writing every which way. I am ok now. - -Mimmilaster: I need to thnk you. You have posted a couple times giving me encouragement and confidence in the team that works at the hospital in Toronto. I have been there and met the doctors, most recently the surgeon, and I am confident in the abilities that they have developed. Wow, such clever and talented and confident young men and women. I have heard that dbs patients do have weight gains following the surgery. I don't have a date yet. We thought it was going to be awhile yet but recent exchanges indicate it may be sooner. We will see. Meanwhile I am glad to hear your praise for that hospital and the team of professionals and any other advice you wish to offer. Okay, have a great day Mirreille, and Everyone else. Be safe and take good care of yourselves. jb
  10. jb49

    Good morning!!

    I was awake, I was shuffling round the house when the morning laser rays of the sun started to nibble at the lid of a big old coffee can which had contained us throughout the night. It took some work for the sun to pry up the eastern edge and the sky began to take shape. I guess the sun had done this before and he knew how to gho about it. Happy Easter everyone. jb
  11. jb49

    Good morning!!

    Good morning to all of my Parky forum friends, I let too much time go between postings. I am sorry for that. My days are longer even though I accomplish less each day. My evenings are a crash on the couch into a tired poor quality sleep that I wake from, do what needs to be done, put wood on the stove and the dog out for a whiz, and then off to bed thinking I will gety caught up on correspondence tomorrow. Caught up becomes elusive. I need to revise my goals to match my capabilities I sometimes think, But with my muleheaded stubborness I continue to push on. The sap has run really well this year. The woods are free from snow and gathering has been the easiest ever. But it has tested my body. I have had times this season where I have had to walk away from situations where I can't do a task. My brothers and neighbours who have helped in the past, now shoulder more of the work although I give up shares of the responsibilities with reluctance. So my thinking has evolved some with those surrenders. I need to make the process easier and so I made a double snatch pulley to lift up pails of sap 4feet to dump into the boiling pan. That saved a lot of shoulder and back strain. I realize that I am now living within a 60 year old body that has been pretty physical and the joints are getting worn and muscles strained. I don't pin all of my limitations on Parkinsons, I know some of it is due to regular aging. Im not complaining, sorry, I guess I am. It is pretty hard to stand there at the end odf the day and have to ask your brother to help you get your coat pulled onto your shoulders. But then, 11 yearss into this crappy disease, I am happy to be able to do what I can do. I have, correction, we have bottled 67 litres oif maple syrup. And Happy St. Patricks day to Em and Sean in Ireland and all of the other Irish folk. Enjoy your big day. Nice to hear from you Peace. Hello Dianne, Linda and Marcia who may be still looking for some good snow to make as snowman. Be safe, be strong, be kind to others and ................. I sit here pondering that last phrase. What do you think it should finish with. Good days to all. Be safe, be strong, be kind to others and .................
  12. jb49

    Good morning!!

    Bard, Em and Sean, Linda, LADy,, Dianne and Miss Swampette, thank you all for the birthday wishes. jb
  13. jb49

    Good morning!!

    Hello Everyone, When I grow up, and develop better work habits, I hope to become more disciplined and attend to required paperwork in a timely manner. I have had the papers here to renew license sticker on my car for about 2 months. It can be done online or at a government office. I renew mine at the office usually but decided to do it online this time. You can do it online up to the date of expiry which would be midnite tonite. It took me about 25 minutes and had about 30 minutes to spare. Next year I will do it at 6 oclock on the day of expiry instead of waiting until 11 pm. Linda, the hospital is a teaching hospital affilliated with the University of Toronto and there are many wonderful and clever minds at work there. The group that will work on my brain take referrals from neurologists from all areas of the country. I think that is the way they keep things in order, in Budget and organised. Your cousin could contact the hospital, Toronto Western, and ask for the neurology department and make a request for an appointment but it would be a long process. Most specialists take new patients through your family gp which partially sorts out cases and they see the proper doctor. Does this help you any? Good to see and hear you She Ra, Cabin in the mountain sounds great to me. If the thought of snow excites you Sheila, I will swap you a farmhouse for a mountain cabin down south for 3 months next winter. Hi Dianne, sounds like a rough weekend for you. That tube is bugging you again! Still? Sorry for that. THE VIEW SOUNDS LOVELY. I'm sorry it will take awhile yet to get the dbs device but that is the way it is here. Oh well. Good Luck to your son LAD y for his singing. As of this week, I am now 60 yrs old. I can't believe that. Good nite my friends jb.
  14. jb49

    Good morning!!

    Good Evening Everyone, I have not posted for a week or so. I sometimes get lost in my own little world. LADy it must be fun in your household to have such a talented singer. I saw the weatherr in Ireland on the news the other day Em, it certainly looked gnurly for the Emerald Isle. Im glad that you found those ice grippers helpful. It hasn't ben icy here much this winter. I think I put the grippers on my boots only once, She Ra, how are you doing? Linda; I googled Billy Blaze and it looked like a good set of books.a As always Mighty Marcia, your stories are sweet and to the point. I was planning to get DBS done in Toronto in late August. I am an approved candidate by the overseeing group as of January and it was at the end of that assessment, that I chose the surgeon from the list and they thought he likely would be able to do it in August. Last Friday, I took the train to toronto for the 230 appt. and met the surgeon and some of the team. They quizzed me, and ran the usual little tests , filled out some paperwork and I am signed in. I don't have a firm date yet, but he did say that the oversight committee were too optmistic with the August. So it sounds like it will be later into the fall. The maple sap has run very steady this season. My brother retired from his job last year and has helped out a lot and made it more fun. It still leaves me tired out and if I tried doing anything on the computer at night, I would fall asleep and face plant into my laptop. I did go to bed tonite but couldn't get all my tired aching pieces, joints and muscles to relax and let me sleep. I am quite dyskinetic now. I sleep poorly, my balance is not very good for walking in the woods, or bending over to tie laces. I am really hoping that the stimulater addresses some of these things at least partially. Hey, I still feel pretty good for the shape I am in. I could also walk away from the rest of the syrup season but i will push on. One thing I do realze is the safety of a given situation. My dyskenesia is making it dangerous for me and anyone else helping bottle up the hot syrup, Next batch I will teach my brother. And on that note I will try sleeping again.Be strong everyone, Hey Dianne, and everyone else. jb xx . .