Krukar
Forum Replies Created
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Hi Ally,
Fraya and I use our Ipads with the different work-out programs. I use the Blessings Health Care website they have several LSVT programs that are specific for Parkinson’s. Fraya does a program called Grow Young almost daily. We purchased an exercise bike which I try and use often. We also have several hand weights which are useful. Our cats love it on our decks. It is so important to just keep moving. Good question. Blessings, Mike
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Lori,
My Parkinson’s journey began officially 10/20 but we guessed I have had it for quite awhile longer. Journaling (writing) on these sites has been a great outlet for me. I am retired so just sitting around waiting is not the best course of action for me. I had a good career so these writings keep my brain percolating still. Thank you for your reminder of that. You show lots of courage in your various endeavors. Blessings, Mike
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Mary Beth,
Where I live Sedona,Arizona I have 2 pals with Parkinson’s. Dan is a decorated Viet Nam Veteran who shares Parkinson’s with me and also significantsobriety. We meet for breakfast every week on Thursdays at 9:00 am. Then my friend Tom and I meet for lunch at 1:00 every Tuesday .What I have found is that it takes too much effort to get a group going in this setting. So we meet in pairs…which is good. Blessings, Mike
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Mary Beth,
I have gotten all the shots. I still got the virus but we believe it was more mild than it would have been otherwise.
I will get the next shot the CDC recommends
for sure. I remember that the virus is not political. Very good question because we will all have that choice soon enough.
Blessings,
Mike
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Hi Ally,
One of the great things about returning home from Alaska was the greetings we received from our cats Tom and Jeri. Jeri our 3 year old kitten shows her love by biting. Tom the 11 year old Male licks to show his affection.
Both add a dimension to our lives.
When I was first diagnosed Jeri insisted I pick up my feet by lying in front of me. What does not kill you makes you stronger. Blessings, Mike -
Mary Beth,
The wedding was great. Everyone had lots of fun. We will go up to Big Lake in the Ma Su valley for our last party then Saturday home to Sedona. My big problem is my stiffness which is on going and hard for me to ignore. It will be good to get back to my therapeutic routine.
Here it is colder and movement is more challenging. Blessings, Mike
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My wife and I are currently in Anchorage where we had lived for a very long time. This morning I had breakfast with my retired Judge pal who was my partner in a court program that he created. During breakfast he informed me that his Son had been diagnosed with early on set Parkinson’s at 43. He is now 50. His wife also has Parkinson’s.
We came to Alaska to attend Our granddaughters wedding on the Kenai Peninsula , the wedding Saturday was a thing of beauty. It went by without a hitch. We took them all to a family dinner last night which went extremely well.
I am discovering that Parkinson’s can be a major part of my life….but it is not the only thing.
Blessings,
Mike
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Hi Mary Beth,
I try and do hand exercises on a regular basis. I do struggle with my writing some. What I prefer to do is type on my I-pad with a stylus. Most importantly for me is that I continue to write on a couple of Parkinson’s websites for my brain. No matter how I do it the point is I exercise my mind and thought process. Thank you a lot Mary Beth for continuing to ask the questions. Blessings, Mike
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Hi Alan,
I am not a Medical Professional. I can not over emphasize that. I began Sinemet in 10/20, I started with 5.5 pills per day. Today I take 6 pills per day. My Neurologist has encouraged me not to increase my total pills. My last dose 2 pills that I took at 4:00 pm she suggested I split them up 1 at 4:00 pm and 1 at 8 pm, so far so good. I also do different non medical things that seem to work. My sleep is pretty calm. I take Melatonin which helps my sleep.
Follow your Doctors advice. They know academically. You of course know your body. Perhaps you can talk with them and share what your experience has been. Blessings, Mike
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Ally,
I have been participating in a Michael J. Fox study for about a year now. Still no results but I like the idea of sharing my experience with Parkinson’s. Blessings, Mike
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We were super blessed to be a part of the 30 day campaign. I was featured in day 4 and then my wife Fraya and I had an on-line interview with Ally.
When I spoke with my old pal Tim yesterday about my condition he said that it can give us renewed focus….and it has.
My life must be more than just my illness.
Also as a result of all these shootings I have begun my own campaign of calling my legislators asking them to advocate for gun control.
I really think it is all about taking my power back using multiple methods. Through exercise , medication communication etc. it has been possible for me to fight the demon that is Parkinson’s. Thank you for the campaign. Blessings, Mike
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Mary Beth,
I started 8/2020 taking 5.5 C/L pills per day. Currently I take 6 pills per day. There are ways to adjust the pills rather than increasing them. Also once you increase your dose it is difficult to reduce them. My Doctors encourage me to exercise more and try different strategies….IE Accupuncture, Qui Gong, LSVT to name just a few. I hope I have reached a balance and will work to not just take more medication!
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Hi Ally,
Fraya and I will travel to Tucson Arizona next Friday. It is a 230 miles east of Sedona our home. We have a niece and nephew there. Driving is easer for me to travel. In July we will fly to Alaska for our granddaughters wedding. Flying is more difficult because of mobility struggles. We have really enjoyed traveling in retirement but since our diagnosis it is more challenging. In October we will have a 11 day Staycation at a resort in Sedona. Mike
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Mary Beth
I have also added Qui Gong to my regimen combined with accupuncture. It is a new variation that seems to work pretty well. My new Physical therapist is all for it. For me it helps to have supportive therapists. So we are all ‘rowing’ in the same direction. I try and stretch every day. Blessings ,Mike
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How interesting that you would ask. On Thursday my wife and I received our 2nd vaccine I am 65 with Parkinson’s my wife is older with other health issues. For me there were more consequences from the vaccine than I expected. Friday I was extremely stiff and just stayed on the couch. Saturday I felt better but during the afternoon the stiffness returned.
Today we went to breakfast and I exercised on the Stationary bike. I also did a 30 minute Qui Gong routine. So that booster caused me some issue, but less for my wife. But when we answered a friend we both agreed that take the booster rather than risk the virus.
Thanks for the question Mary Beth, I hope you and your parents stay well. Blessings, Mike
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In 2 hours I will go for my 3rd accupuncture treatment. So far so good. My intention is to continue this treatment. For me in my struggle I prefer this natural strategy rather than more C/L. I am currently taking 6 pills per day and at 65 my hope is to not increase my dose. I do daily exercise and try to eat right. The way I figure it God has provided me with natural strategies. Accupuncture is just the newest vehicle. Blessings, Mike
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Jessie,
<p style=”text-align: left;”>I was diagnosed with Parkinson’s ‘officially’ 8/2020. I am 65. That Gauri has early on-set since the age of 41 is very difficult yet she has hung in there. She has returned to her avocations in a way that are inspirational. For me the initial shock of naming my condition has subsided as I have adapted to ongoing struggle. But there are joys for me with my wife , friends and my cats. Rather than focus on the problem I am shifting my attention toward my solution. Gauri you are a fine example of hope motivating solution. Blessings, Mike</p>
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Andrew,
I consider my self an athlete as well. At 65 my C/L dose has been going up. Today I am on 6 pills. When I asked the neurologist to up my C/L due to my stiffness her response was why not exercise more and keep the C/L at the same level. I already get massages every 2 weeks. I will also begin accupuncture every 2 weeks. Follow the research and don’t fall back on more pills. Blessings, Mike
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I just made my appointment for acupuncture this morning. I will let you all know how it goes! Blessings, Mike
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Mary Beth,
<p style=”text-align: right;”>Like most things in this struggle I battle hunching with exercise . I find LSVT especially use ful. Also have you guys checked out the free Stanford Parkinson’s Outreach it has a variety of sites that are good sources for Parkinson’s specific routines.
Blessings, Mike</p>
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What a great discussion on the benefits of C/L. I have been on the medication since 8/2020. It has been beneficial. My dose began at a total of 5.5 pills per day up to 6 pills per day. I do exercise daily and try to eat right. This Tuesday I met with my Neurologist, because of some stiffness I requested that I be bumped up to 7 or 8 pills per day. She looked at me and said why would you want to do that. “At 65 you are a young man and more medication could cause more problems.” So she suggested more exercise as the best way to deal with stiffness. “C/L is not the answer for every thing and it can have consequences.” Blessings, Mike
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Mary Beth,
I use a weekly pill container for my daily meds. For my C/L which I take 4 times per day I have Alexa ping at each time required. Blessings, Mike -
Ally,
Not much to share. These studies seem to be long term. For me the most important thing is to stick with it. Who knows when they will have good results. But I will be waiting with my best self! Blessings, Mike
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Mary Beth,
Acupuncture seem to have helped, massage is good also. Qui gong is just a new type of stretching. I have also begun working with a new Physical Therapist. None of it is too crazy just a little different. Blessings, Mike