Hi Again

I've not been around here in awhile. I just wanted to check in with you all. How about I give you an update on my health and you give me an update on your health. My general attitude is that life is good, and I feel fortunate to have the family I do and the doctors I have. On my last visit to the clinic (3/27) she upped my Sinemet to 4 times a day (it was 3). From what I told her and from the examine she felt it was called for and I agreed. Also I was taking the Azilect in the evening and she switched that to the morning. (I know other treatments exist but I love the clinic I go to and I'm playing by their rules alone.) I got my Handy Capped placard so I can use those parking places now. My gait has definitely gotten worse and I am prone to falling when I rush, so I don't rush. Hope to hear from some old and new friends.

72 Replies

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  • Hi Theresa. It is so good to hear from you! I have had you on my mind. It's always a little disconcerting when somebody drops out for a while. But I know we all get busy and have other things going on. It's good to hear that you're still on your feet and hanging in there. I am well and very grateful also for family and friends.

  • I was just thinking of how much you were probably missing me right now. Well it certainly is good for you to here from me again. So did the family make it to Orlando yet? I was thinking that was a spring thing.

    HAL

  • Hi Hal....You bet I missed you. You are always fun to talk to Hal. I didn't recognize who you were at first. Why the name change?

    The family trip to Orlando is on for April 22, 2018 (6 nights). I like to plan way in advance. I had backed out of the trip but once I started looking for Dinner reservations and looking at the hotel features and all the new stuff that has been added to Disney World I just couldn't stand it and added myself back in on the trip. I'm thinking getting a scooter to get around and maybe asking my doctor to pump me up with steroids just for the vacation I'll do fine. Don't know if he will do the steroid thing. When I went in 2015 and was already feeling a great deal of fatigue I asked my GP and he did it for me. But at that time I was not yet diagnosed and the GP chalked my complaints to a litany of other things. I haven't had any steroids since so it's not like I'm getting too much of them.

  • So glad to hear it. If you are staying on site and you feel like you need a break it should not take more than a half an hour to get back to your room and rest. Just think of it as a marathon and do what you must to make it to the end. Now if your grand kids have any of those Nintendo 3Ds, they will never get a chance to street pass ( I know this is probably Greek to you ) so many people from so many parts of the World.

  • Our reservations are at The Beach Club Disney Resort. It is actually within walking distance to the entrance of Epicot. But we can also take a complimentary boat ride over to it. There is also a complimentary boat ride over to Disney's Hollywood Studio park. To get to the Magic Kingdom we can go to Epicot and take the tram. The only park we will have to take a bus to is Animal Kingdom.

  • Wow, did you remember my suggestions? That is the perfect spot if you have Parkinson,s. Although Epicot is within walking distance I would take the water taxi, it lets you off at the back entrance. Also if you splurge the seafood buffet is fantastic and worth going broke over.

  • We are getting the Deluxe Dinning package. I plan to eat well while there. So any really good restaurants I'd love to hear about them. Already I'm looking over all the restaurants and planning which day and which meal to make reservations for. I have a pretty long list already. There will be 9 of us so I'm going to make reservations for two or even 3 restaurants a day because we would never get seated without reservations and wind up doing fast food and I sure don't want to do that. Can't make the reservations until 180 days before the trip, but I want to get all planned out before then.

    Originally we were going to make reservations at the Saratoga Treehouse Villa's but I did change my mind because of the location of The Beach Club and the fantastic pool they have. I can't really remember if it was because of what you said or not, but something got me to look at the place and it didn't take long for me to get sold on it. My grandkids are like fish and we are planning a day of not going to the parks but just hanging at the hotel and the pool. The trip will be fly in Sunday, Monday & Tuesday parks, Wednesday down time at the hotel, Thurs & Friday parks, and Saturday fly home.

    This whole trip is going to cost me about half of what my first house cost in 1976 --- LOL --- but I don't care. Nothing is more valuable in life than good family memories.

  • Well then Great minds think alike. The pool will be a big hit, and the slide.

  • Good for you, Theresa. You should have such a good time in such a relaxed environment.

    I'm really happy for you!

    Although we can't see pictures of your trip (unless you have Facebook to share them) but, I am sure we all are going to be eager to hear about your vacation.

    Have fun! Relax! And enjoy yourself with the grandkids.

    --John

  • Wow! That's part of my problem that I just demonstrated with you, Theresa (confusion), but otherwise, I'm impressed with how well you plan ahead. Wow!

    Just saw my Neuro this morning and he upped my Carb/Leva a bit (but really at the suggestion of my wife and me). We told him that the effect of my meds seemed to wear off toward the late afternoon. I've been taking 25 - 100 MG (2 morning, 2 mid-day, 1 late afternoon, and 1 more with the rest of my night meds). Now, I will be adding another single dose in late afternoon.

    Since I have routinely had difficulty sleeping or staying asleep, he also upped my Trazodone dosage at night from 50 MG to 100 MG.

    He also is finally arranging a sleep study and a possible referral to a doctor who specializes in movement disorders.

    At long last, it really seems that I'm making some progress and that my Neuro is actually proactive now instead of just plodding along to see what happens next. Yea!

    --John

  • John I changed from my regular Neuro to a Movement Disorder Clinic and I am so glad I did it. That was last November. I go there every 3 months and each time I go I get a very complete neurological exam. Where I go is a teaching hospital that also does research. UAMS (University of Arkansas for Medical Science) I have not volunteered for any research though. Each appointment takes about an hour and a half. I feel I'm really getting all the possible help I can.

  • Hi Enidah, it's good to be back.

  • Sorry Enidah I think I replied to you. Well I am sure it has been a treat for both of you.

  • Good luck.I am suffering from the same problems(falling down when I am not paying attention to where my foot is and let arm restlessness). My doctor has upped my LevPropane to four pills with each meal four times a day

  • I live in Canada and have seen doctors at the Parkinson research institute at the university of BC

  • Hi Alwarid,

    my husband suffers from Parkinsons and we live in Kelowna. What is your experience with the Vancouver facility of the university?

  • Please call me at my home number.it is listed with the phone company.

  • I envy you your Health System in Canada. Here in the US we have a big mess and from what I hear it is going to be getting worse in the near future. So sad.

  • I am happy to be livi ng In Canada.i have already seen three neurologists. Vancouver at the Univrsity of BC Maed School in addition to my GP.I will fight any government which wishes to put corporate profits ahead of my health.

    I know we are lucky and Canadians take pride in our Medicare System.

    Good luck to you.I had a boss whose name wasTagak

    Curley in the North West Territories.He is an Inuk from Eskimo pointing the Central Arctic. You are not his lost cousin!?

    PS . I had Cancer in 1994 and wa treated for it at the BC CNcer Agency and it did not cost me a penny!

  • Well since Curley is my husbands surname which I took when I got married I can safely say that I have no familiar connection to your boss. But who knows --- my husband might. Go far enough back aren't we all long lost cousins?

  • Good to hear from you. I'm glad your doctor is working with you on some issues. I'm doing ok. My dad had surgery last Wed & wasn't doing well this weekend but he's doing better today. The stress from that has made my symptoms worse but I'm sitting in my recliner tonight & boy does it feel good!

    Glad you got to hear from Hal today. 😜

  • Hi Laglag...Oh Yeah...recliners are the best! I park myself down on mine in the living room and say no matter what happens I'm not getting out until I have to got to the bathroom.

  • Prayers for continued healing for your dad.

    Get some rest, Deb. Tell your body you deserve it!

    --John

  • Laglag I hope your Dad is doing well. Stress with our disease makes all the symptoms worse.

  • Thanks Theresa. He is doing much better than he was over the weekend.

  • Hi Teresa you haven't mentioned what exercise you are doing. pD warrior definitely helps and improves walking and falling if done regularly, as does fast walking. The WII is also good for balance and gait and good fun too.

    It's been proven that regular exercise is as important as medication and it's definitely slowed down my progression and need for extra meds.

  • Hi Bazillion....I know that exercise is good but I find it a touchy subject and would rather not get into it. My exercise is walking my dog every day and I am refusing to even disgust any additional. I've tried and I've tried and just will not try anymore.

  • Damn it Theresa, you have Parkinson's!.........

    I feel alcoholism and Parkinson's are both maladies you get yelled at for having.

  • An amusing anecdote,

    My son takes the bus home from College. His stop is about a half a mile walking distance to our house. He calls and asks if he can get a ride home and my wife who is making him a sandwich asks If I could pick him up and I say sure. I go upstairs and put on my socks and shoes and go down to the garage just in time to see her pull out and go to pick him up. When she returned she was upset with me for taking so long so she just went to pick him up herself. She then asked if I could be a little faster next time.

    I started laughing and she asked what was funny? my reply was " you, suck as a care giver." Then we both started laughing. But yes, alcoholism and Parkinson's, the only disease you get yelled at for having.

  • LOL

  • Ziddy, from Delay the Disease got in touch with me.

    After I finish with my PT for my neck in another couple of months, I'm going to contact his trainer, for the initial evaluation.

    Looking forward to it. Just need to wait till I can pay for it, but it's in the works.

    --John

  • Hi John

    My dog odes is PD..My neck is really uncomfortable and I can not sleep.I have seen three different physio therapists and two masseurs.....please help

    By telling me what and who worked on your neck and the results so far!6? 🇨🇦

  • Sorry the Auto Coorect program in my I Phone changed'I was diagnosed with PD' to 'My dog is pd '

    Sorry!

    Shakir alwarid

  • Don't you just hate when that happens. It happens all the time to all of us.

  • What is the PD warrior and how do I get hold of an instructionsvideo

  • Thanks for the update, Theresa! Your post encourages me, because what is important to both of us is an attitude of gratitude; the increased symptoms are just a PITA that can be addressed medically, if imperfectly. It's pretty simple, as you say; if you are prone to falling when you rush, don't rush! My blessings go to my partner, who does most of the housework and he gives great neck and back massages!

    Since I joined about a year ago I have gained strength and lost about ten pounds ( deliberately) through working out at the gym, mostly Pilates, aerobics and yoga classes with walking, weights at other times. Unfortunately, I have noticed increased fatigue and slowness and weakness doing simple tasks. It takes longer to dress and I get back and neck pain when I stand for too long while preparing meals. I compensate by allowing more time to do everything and I have mostly given up on evening events as I am just pooped by dinner time. Still work one afternoon a week, see family and friends, book group, stuff that I enjoy.

    So far I just take rasagaline, finally has gone generic, and supplements, but when I see my neuro in June, may be open to other meds. I do find that a mostly plant based diet, no alcohol or added sugar, with turmeric pepper mixture added to almond milk and a bit of coconut oil helps with the pain. I also have arthritis. And yes, I occasionally cheat!

    I admire your spirit as well as the encouragement of everyone here. It's all about attitude!

  • Rasagaline has gone generic? In the US? I need to check on that. The Azilect is major expensive.

  • $ 10 dollars a month now. Man I sure hope it is doing something.

  • It's still somewhat pricey since only one company holds the generic patent for a short period if you have to pay full price but fortunately my insurance copay is $7. Here in the US seniors get caught in the "donut hole" that kicks in when the total cost, not just what the patient pays reaches a threshold. I hope that the price comes down before then. As of now generic rasagiline is only around $200 less than when Azilect was the only option. Best to check with your pharmacist and insurance company.

  • Hi Teresa

    I forgot to mention thatmost Canadian Provinces pay all or most of the costs of Meg's.I do not even know how much my medications cost although. The pharmacist prints out a receipt showing how much anymed costs and how much the Govt pays and how much the patient does pay....I live in the Yukon (next to Alaska,But saner!)...the Govt here pays the whole costs of mess,doctors,dentist for regular visits and cleaning ,etc

    YEs,We live better than US Cotizens(on the UN Wellness Index)

  • Alwarid Now you are rubbing salt in the wound. Believe me the people of the US would love for our government to get it right, but politics have gotten ridiculous here.

  • Have a good trip to Orlando. Painting anything? I am off PD prescriptions, following Silvestrov's regimen. The things I replaced Rx with are costly but I feel they are safer long term and they work better in may ways. Glad you are posting here again. Be well, kind and helpful.

  • hi Buzz, so what are you taking?mary

  • I am taking L Dopa capsules made by Source Naturals 4 times (usually) a day. I take 3 to 5 each time, depending on my need at the time. I take them with fish oil, EMERGEN C, vit C or an orange, and caffeine free green tea extract for the 1st and 3rd doses. I take them with quercetin/bromelain for the 2nd and 4th doses. I avoid coffee and sodas, I drink tea. I also take a few supplements recommended by my cardiologist, I don't know how that impacts PD but they are ubiquinol vit D3 and cal/mag (not with L Dopa). I also take twice a day morning and bedtime a compound called Dr. Stephen Langers Glutathione Precursor Complex-it has some NAC and cysteine...etc. that is supposed to help us

  • thanks, been off line

  • Mary Isn't L-Dopa a PD medication. That is what Sinemet is. It is L-Dopa for the dopamine replacement and L-Carb to curtail the nausea that the L-Dopa can bring. So my point is, if you are taking L-Dopa you are not off PD meds.

  • I understand. I wrote, "I am off PD prescriptions"...and stop calling me Mary. :)

  • I haven't painted in awhile. My hand does not like to hold on to a pen or a paint brush. Thanks for asking Buzz. It's not that I can't do it, but it is more work than I want to put into it.

  • Theresa,

    Just thinking:

    I wonder if it would help you to have "weighted paintbrushes." I don't know if they even make weights that would go over the brushes.

    I use weighted pencils for writing. It's not perfect, but my writing is a little more controlled and legible.

    It's a shame to have to give up something you love so much. That's the way I felt about giving up my guitar and banjo. My fingers just wouldn't do what I wanted of them.

    Also glad to hear you are still driving.

    I had to give that up, tough to do, not solely because of my PD, but because of my neck injury. I can't turn my head enough to see around me (even with mirrors), to be a safe driver.

    But, my wife takes me everywhere I need to go and I go with her when she needs to go somewhere. It really makes for quality time together that I cherish.

    --John

  • Oh John I'm so sorry you are not able to drive any longer. That's something I'm not looking forward and hope it is a long time off.

    I could paint in short time frames if I were inclined. It's amazing how one hour after my Sinemet how I can do most anything I want to do (except exert myself), but then it goes down hill in a couple of hours. That's why the doc increased the number of times I take it. Makes me really feel like a drug addict but I can live with that. (not looking for alternative folks...just stating my reality).

  • Hi Teresa , I have long enjoyed your posts. They have always been thoughtful. I thought of writing to ask why we haven't heard from you. You are missed. We have 5 grandchildren and one of the worst parts of this disease is not being able to do the active things I would like to do with them. I wish you much success on your planned trip. Please keep in touch and good luck with your treatment. Maybe one day we can celebrate a cure and the elimination of PD.

  • Hi Diane. I have 5 grandchildren also. Four girls and one boy. Ages from 4 - 10. They sure do wear me out but I have found since I take Sinemet I have a lot more patience with them. Isn't that funny.

  • You need to try Zoloft, you might find that you even have enough room in your Disney Hotel to let a couple of the rugrats sleep in the bed next to yours. But then again you did want to enjoy your vacation.

  • I do take Zoloft - 100mg once a day. Have for a very long time. As for the rugrats sleeping in my bed it wouldn't bother me. Asleep is when they are at their best behavior.

  • Hi Theresa good too see you back. Funny, or not so funny, thing has been happening to me lately. I awaken each morning with thoughts of insurmountable and overwhelming feelings about PD. And I feel like I am going to be demented soon. In essence I'm projecting what an awful future lays in store for me. Then I take my PD pills and a half an hour later things reverse and I get on with my day. I take 5 Sinimets a day and I guess my body is yearning for 1 at 6:30 a.m.

  • Hi tmjennings, I think that what is probably happening to you is that the PD symptom of depression is showing itself when you are having off time from your L-dopa. I probably should not be saying this, but just between us PD folks I have no intention of having a miserable future. If I become incapacitated I have no intention of sticking around (if you know what I mean). I will not burden my family financially or emotionally with having to care for a demented incapacitated Nana. And there is no way in this Universe that my grandchild will have to change my diaper. That just me.

  • Believe me there is no way a grandchild of yours will ever change your diaper. They will throw money into a pot and pay someone else to do it. So make that Disney Vacation a trip for them to really remember.

  • I'm glad you are back too. My foot has been a problem lately. I checked it out and learned it was not broken, fractured or sprained. The foot doctor's assistant thinks it's a bit of osteoarthritis or tendonitis and prescribed a Powerstep Pinnacle orthotic with arch support and 6 weeks of PT before seeing the foot doctor in 8 weeks (he did my bunion surgeries. The therapist thinks I only need 3 weeks of PT and now I have only one week left. I am not supposed to go to tai chi until he evaluates me next week. My right foot has developed some cramping, but I seem to have solved that by using a toe spacer between my big toe and next toe. You can buy them in the drug store where the Dr. Scholl things are. Anyway, that is what I have been going through lately :-).

  • Hi Hopedope I'm so sorry to hear all the foot problems. I hope the PT helps.

  • Hi! TheresaCurley,

    Even in the midst of bad tHings happening, you always share the brightest glow of hope and encouragement. You've done that for me since I arrived here. I am so grateful!

    Now then, I want to hear all about your Disney trip with your grandson's.

    I'm sure, with all the planning you did for them and you, they had a wonderful time, in the pools, taking part in the fun educational experiences and "slamming down" some good grub.

    I don't know how many people have ever heard of Yelp. Most people believe that the members only do restaurant reviews, but that's not quite the full spectrum.

    I've been involved with the group for quite some time now and I love it. . . even before my accident.

    When I was going through my Speech Therapy and OT, trying to get my thoughts and words together it was tough because of the brain trauma I experienced.

    But, when my wife and I would go to different restaurants and businesses; (Doctor's, insurance offices) I found that writing my reviews again, helped me to grasp words I wanted to use.

    That helped me a lot. I've read about the number of people here who have been able to restore that spark of life that we need by writing; poetry, verse, creative writing, short stories and the like.

    It really does help to keep both the body and mind active.

  • Hi Wolfman, I seemed to have confused people about my Disney trip. It isn't until April 22, 2018 (next year). I'm micro planning it. We have hotel reservations already because if you want to get what you want at DisneyWorld you need to make your reservations a year or more in advance. I'm researching every restaurant in Disneyworld that one can make reservations for. We are a family of 9, so we will need reservations if we ever want to get seated in any restaurant. I'm making a list of the uniqueness of each restaurant, the rates, the types of food, and any other pertinent information and sometime before September I will sit down with my two daughter-in-laws and we will plan which restaurants to go to which day and make the dinning reservations. To me the planning is half the fun....I live the trip in my head every time I go through all the information on the Disneyworld site.

  • Glad your foot was not majorly hurt, hopedope.

    Happy to hear that the toe spacer is working too.

    -John

  • TheresaCurley,

    I also have not been here for a bit because I've been very busy with my PT, which has been expanded to four days a week, while I'm finished with my SP and OT. Yea!

    I'm also happy that you like your doctors and the medical care you are getting. The handicapped placard should be a hep to you, too.

    Personal Tirade Follows:

    However, I hate seeing kids (teens and twenties and those who, in my estimation have no reason to park, using their parents, or grandparents handicapped placard just so they can get into the cinema easier and faster, or a store, or even to ride an electric cart.

    I'll get off my soapbox for now. But, many deserving people need those spots and the electric carts in grocery stores. Oops! Sorry, now I'll get off the soap box since "I'm preaching to the choir,"

    In any case, I'm glad that now your life should be a little easier!

    Hope so!

    --John

  • Actually it is illegal for anyone but the person the placard was made for to use it but we all know that isn't enforced...I agreed that it should be. I don't know if it is done everywhere like they do in Arkansas, but here in Arkansas they put a medical symbol on your driver's license and on the back of the license is the number of your placard(s). So it would be very easy for a law enforcer to know if the person using the placard is the person it was for. But like I said, I never heard of it being enforced.

  • HI Theresa, good that you are going to go with your family. Your grandchildren will remember this trip forever, you can do this, just take the day at your own pace, nap mid afternoon because you have got to see the fireworks display .Get a photo of yourself with Mickey and post it. Life , what a ride this is.

  • Thanks Gymbag. Good to hear from you. Where we will be staying I can easily go back to the hotel by myself and nap in the afternoon and I just might do that.

  • Hi Theresa. Good to hear from you. I just got back from 2 weeks in Florida with my sister and her husband. It is a big trip for me, since I find flying difficult for many reasons. IT is a short flight and it went ok both ways. I then had a 3 hour drive to their location. The sun was great. And I enjoy a change of scenery. It's been a long, grey winter here in Ontario Canada. You will have a great time I am sure. Rest where possible.

    Robyn

  • Hi Robyn, I love hearing about people's vacations and I'm so glad you were able to make the trip and enjoy some fun in the sun.

  • The only issue you may have staying at the Beach Club is the half an hour to get to Disney World. The park is the farthest away but everything else is nice and close.

  • Hal I'm not understanding. I'm betting you meant to say the half hour to get to the Magic Kingdom part of Disneyworld. I was thinking that to get to the Magic Kingdom we could go over to Epcot and take the Tram. I can see that it would take at least a half hour to do that. But honestly compared to the last time we went that is nothing. We stayed at the Art of Animation and we had to take a bus everywhere and that in itself was at least a half hour.

  • Yes, about a half an hour but it will take a bit longer during opening and closing. I also forgot about Down Town Disney, that also is a half hour to get there when busy.

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