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Twitchy mama

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About Twitchy mama

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    Carnarvon Ontario- summer, Florida-winter

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  1. Twitchy mama


    I think it helps smooth out my symptoms and I now take it at 9 pm so the side effects are minimal. However, I think it has caused weight gain which is distressing, so I am wondering what would happen if I stopped taking it. I will have that conversation with my mds next visit. I am coping quite well with my pd and I don't want to mess that up. Exercise seems to be my best friend and c/l allows that to happen.
  2. Twitchy mama

    Good morning!!

    Jb49, your cheerleaders are ready al around the world. God bless you and keep you safe. We will all be praying for you! Twitch
  3. Twitchy mama


    I started on 2 mg Ropinerole ER when first diagnosed and then moved up to 4 mg. When that wasnt enough I tried 6 mg but started having hallucinations and terrible brain fog so I went back to 4 mg and added carbidopa/levodopa 25/100 3x a day and its working well for me. Good luck on your journey. Twitch
  4. Twitchy mama

    Loss of Smell?

    Smell is gone and just noticing diminished taste - and we eat really spicy food! I miss smelling the coffee in the morning, and a nice wine in the evening.
  5. Twitchy mama

    Good morning!!

    And dont forget the Robert Munsch books - I!ll love you forever!
  6. Twitchy mama

    Good morning!!

    Thornton burgess fables of the green forest ? I remember those stories!
  7. Twitchy mama

    Good morning!!

    Niagara Falls is lovely, so is Niagara on the Lake. Toronto is a beautiful city, if you like cities! Tobermory if you like getting away from the hustle and bustle. Gosh, there are so many wonderful things to do in Ontario, I don't know where to start. good luck, twitch
  8. Twitchy mama

    Diagnosed at 40 very scared

    I was started on Ropinerole ER 2mg when diagnosed and then moved up to 4mg. Side effects were terrible but the worst was having constant brain fog for months - I couldn't tolerate it. My dr recommended taking it at night and that helped somewhat, but when my dose was upped to 6mg I started hallucinating and I cut back to 4 mg. then I added sinemet, 1/2 tablet 3 x a day and life became so much better. I am now on 1 tablet 3x a day and still take the Ropinerole ER 4mg at night and doing quite well but I won't try taking more Ropinerole. if anything helps me feel up, it is the sinemet and exercise! Keep moving! twitchy mama
  9. Twitchy mama

    Good morning!!

    Merry Christmas to all and may we all do our best to support one another in the new year! Twitchy Mama
  10. Twitchy mama

    New guy here - a journey I'd like to avoid

    Hi Super - the only time I get tremors is when I am waking up and they are getting more pronounced lately - more like flapping hands and arms, and sometimes my legs go too. I often feel shakey inside but these are not visible - not sure if they are internal tremors. My PD is mostly stiffness and rigidity. after 2 years I am starting to accept my diagnosis and move forward - there is joy to be found in each day! All the best to you - twitch
  11. Twitchy mama

    Summer adventure season starting

    You are such a cool dad!! And hurray for your daughter!!
  12. Twitchy mama

    Good morning!!

    Hahaha what a fabulous journey that penny has taken! And now it is my turn to start a journey, not nearly as exciting but heading from Ontario to Florida so I get two thanksgivings! Be well and find a little joy in each day and keep on smiling! twitch
  13. Twitchy mama

    Summer adventure season starting

    Have a wonderful trip!
  14. Twitchy mama

    Summer adventure season starting

    Way to go, Stump! Quite an achievement
  15. Good morning Twitchy.  I am looking up Carnarvon.  No idea where that is, Big province, Ontario is.  How long do you spend here in in the summer?

    1. Show previous comments  1 more
    2. jb49


      Hi Janie,,  

      How are you today?  Are you American or Canadian? American I thought, or rather presumed.  Hurricane Irma is supposed  to be coming up through Florida in a couple days.  Will your place in Florida be ok?  Must be a worry for you.  I hope your place will be fine. My wife is supposed to go to Sanibel, (Fort Meyers) for a Parkinson convention of Researchers on Friday the 15th, next weekend.  She is waiting and hoping that it gets cancelled.

      Summerville, where did you get that place?  Nope, my address is Frankford. About 7 miles north of Trenton, which is on the hwy 401 about 100 miles east of Toronto. There we live on a small farm. I looked up Carnarvon.  I have driven through that area, Bracebridge,. Orilla, Lindsay, and Haliburton. Your town is about a 3 hr drive from here I think. 

      I did have an MRI done in Belleville 2 days ago.  Next Friday, I meet with the neurologist  in Toronto.  I am surprised that I am getting the DBS done, but I do have too much off time.

      Take care Janie, hope the hurricanes leave you untouched. Good health to you. 


    3. Twitchy mama

      Twitchy mama

      Hi JB, I am Canadian born in Middleton NS. We have lived in the US since 1994. Florida is a big question mark but if the house blows away to Kansas we can stay here. Don't know why I thought of Summerville- don't know why I think of lots of things!! Do know Belleville and Trenton (my dad was Air Force).

      if we ever get down that way, we'll try to find you - I have a brother in Montreal 

      there is a new subcutaneous delivery system for c/l . I can't figure out how to post it here but if you give me your email address I can forward the article.

      is your wife a PD researcher? We are just an hour north of ft Myers hope her trip is smooth and safe

      your positive attitude is such a gift to me and many others! Keep up your good works,JB 



    4. jb49


      Hello Twitchy,  I think that CFB Trenton is Canada's biggest Base. It was in place prior to WW2 and served as a training field.  It is home to a search and rescue squadron and the centre of air transport.  It is a major player in local economics. I picked up a cd of my MRI from the hospital in Belleville yesterday.  I will take that to my DBS consultation in Toronto next Friday.  My wife and a friend in Trenton have recently had DBS surgeries with good results.  I am heading down that path I think. Thank you for the input about the new delivery system.  I do know that many people with pumps are happy with the delivery of medicine.  My wife is expecting the conference to be postponed. Doesn't make much sense to be flying into an area that has been evacuated although the meeting is not until the 15th of September. She is not a researcher, but sits on a board as a dbs patient advocate.  That would be great to meet you if you were down this way sometime.  Have a good weekend TW.  jb