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Lee
Member
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Posted: Fri Feb 20th, 2009 00:46 |
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Gee I can relate to alot of this too! I was 60 a few months ago and have been "working at the MP" for four years now! I am so clumsy,always bumping into folks and "hard things". I hit my head on things that are just too obvious to others. My peripheral vision has always been lousy and my eye docs say my left eye looks like it belongs to another person ... I have extremely narrow angles in both eyes but the left one is much worse. The good news is my vision is better since the MP and I am not as clumsy! But I cannot wear my contacts yet.
I also have the dropsies. I drop everything especially in the shower. I cannot feel my finger tips. This maybe due to aging and I sure hope the MP can help this too! I have numb places in my back and when I herx real bad they itch like crazy! I am sure these muscles were full of CWD. I am muscular in weird places from doing gymnastics. I taught gymnastics up until almost 40. So the itching is proving to me the feeling is coming back there .... I love it! I will be doing cartwheels again real soon! Thanks MP!! Lee
____________________
2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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Debz
Member
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Posted: Sun Apr 19th, 2009 22:09 |
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Deb Grebatz,
When I was practicing for my drums lessons, I would have to take a break out in the lounge on a couch for a half an hour or so. Sometimes I would toss my cookies; which might have included a severe headache. I would sun myself outside or get a diet pepsi to stay awake and alert. The drum coordination was challenging and the typing was a fast of slow thing that took allot of repetitions, certainly not competitive. A year of MP made a difference.....until C hit, but I have good days.
Debz
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Dx-Sarc(collagen disorder)/Herpes Whitlow 03, Neuro,sinus,Hyster,ear. Mr Muscle-hayfever,acute/chron bronchitis, pneumonia,hilar adenopathy,liver tumor&lesion,lg spleen,strep throat,thrush, psyco Mp:4/8/08 mino & Noirs,4/28/08 benicar
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Deb Grabetz
Support Team
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Posted: Mon Apr 20th, 2009 22:20 |
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Debz
It sometimes felt like I was trying to read a foreign language when I tried to read music. Now it has become possible again! I did notice one week when I was having some strong IP and struggling with an increase of my abx that I was not sight reading as well---and I think it had more to do with my fatigue level than anything. It seems when we are fatigued it is our body choosing to take care of the important operations of running the human body---the good stuff like energy, just isn't as important and seems to be the first to go as the body works hard to heal.
So, do you still play?? Deb
____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Debz
Member
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Posted: Tue Apr 21st, 2009 15:49 |
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Deb Grabetz,
Ya know the PH3 is a Clyndi brain fog on D2-5, for me. I can sit all day to read and find myself wanting to know more about MP "Theoretical Biology and Medical Modeling." Balance, reflexes, sensations, smiles, moods are better. I'll have to start playing again, bet it won't put me to sleep in 15 minutes like it use to.
What about you these days?
Debbie
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Dx-Sarc(collagen disorder)/Herpes Whitlow 03, Neuro,sinus,Hyster,ear. Mr Muscle-hayfever,acute/chron bronchitis, pneumonia,hilar adenopathy,liver tumor&lesion,lg spleen,strep throat,thrush, psyco Mp:4/8/08 mino & Noirs,4/28/08 benicar
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HeatherK
Member
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Posted: Tue Jan 12th, 2010 12:22 |
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I just found this thread. I am 53, almost 28 months on MP.
I had given up playing the piano before the MP, tooo fatigued, and it got worse in the next year and half while on the MP. The fingers would not respond, and also the sight / brain fog sure affected my ability to read the music, and the brain would not transfer that message to the fingers...weird it felt, as the music pieces were familiar to me for years....
I actually gave the my Yahama keyboard to my daughter for a couple of years but have it back now, and play it abt once a week, encouraged that I WANT to do it and can now and enjoy playing easier pieces so far. I have a ways to go but there is improvement in motor skills. I still am dealing with photosensitiviy still so the light usually gets me before I really want to stop playing.
Like Freddie , I too just notice recently my balance is better when getting dressed, I can stand on one leg again!
And I can climb and descend stairs without the railing now most times, depending on how much IP is going on of course...
Heather
Last edited on Tue Jan 12th, 2010 13:18 by HeatherK
____________________
CFS for 5 yrs+ /started MP Sept20/07;( 25-D=24ng/ml, 1,25=47.5pg/ml.).. Dec/07(25-D= 14.4 ) Started Phase Two Mar 4/08; Dec 09(25D= 6); In blackout home/ wearing NoIRs/ Presumed celiac, wheat,dairy free.
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Deb Grabetz
Support Team
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Posted: Tue Jan 12th, 2010 13:05 |
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Heather,
What an accomplishment that must be fore you to even attempt! Good for you, it seems with me that anything that I can push myself to do consistently really helps with my cognitive function. I have no trouble doing repetitive things, they are easy on my brain but "new" things seem to go round and round in my brain, even little things, until I can grasp the idea. So I make lists which seem to keep the focus.
About a year ago, even though I still deal with some neuro, I decided to go back for lessons, since I have not played in quite some time. It has been fun, yet can be challenging at times. Three years ago I would have been unable to even think about getting to the lesson, much less trying to play! Some days I am right on and other days, well let's say my piano teacher is very patient with me But I think it is great therapy...
We are the same age...!  Happy Playing! Deb
____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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HeatherK
Member
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Posted: Tue Jan 12th, 2010 13:26 |
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Wow Deb, piano lessons??!! Good for You, I had not ever considered that!! Not yet anyway... I am not out and about yet. Love the Piano smiley icon Cute!
I am allowing myself a dream though, I want to visit Scotland some day, thats a big goal I know, maybe 10 years away but just like Susan Boyle, we can Dream a dream eh? When my light sensitivity allows on the computer, I have and do genealogy research and have traced my family in Scotland and know where I would want to visit now. The research has kept my sanity many, many times...
I did not know we are the same age, always thought you were younger .... now I really admire you being able to work again on those night flights. Bravo!
Heather
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CFS for 5 yrs+ /started MP Sept20/07;( 25-D=24ng/ml, 1,25=47.5pg/ml.).. Dec/07(25-D= 14.4 ) Started Phase Two Mar 4/08; Dec 09(25D= 6); In blackout home/ wearing NoIRs/ Presumed celiac, wheat,dairy free.
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Deb Grabetz
Support Team
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Posted: Tue Jan 12th, 2010 13:28 |
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____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Debz
Member
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Posted: Tue Jan 12th, 2010 16:17 |
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Hi Debbie,
Ah.....memories of drum practice room right under the incandescent lights and a closed door authorizing little oxygen. I thought I was feeling pretty good @ 1yr 9months MP, so I tested my muscles on the small skii hills at Bittersweet...yup, I have a ways to go! My keyboard in the livingroom will do as my motor/neuro skills are alot better. ~Debz
____________________
Dx-Sarc(collagen disorder)/Herpes Whitlow 03, Neuro,sinus,Hyster,ear. Mr Muscle-hayfever,acute/chron bronchitis, pneumonia,hilar adenopathy,liver tumor&lesion,lg spleen,strep throat,thrush, psyco Mp:4/8/08 mino & Noirs,4/28/08 benicar
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
| Status: |
Offline
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Posted: Fri Jan 15th, 2010 04:28 |
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Heather, I've been planning a trip to Europe almost since the beginning of starting the MP. One, my cousins--my closest family members other than my mother--live in the U.K. and I want to go for the summer, but two, I've wanted to go to Italy or Greece and so I want to go there for a week or two before heading to the U.K. I finally decided on Greece. When I'm visiting one cousin (will stay one week on three or four separate occasions throughout the summer with each of my three cousins in N. Ireland and probably a week in Scotland), she plans to take me to one of her favorite vacation spots for a week. I'm hoping it is the south of France, but it could be Istanbul too. I'm going to let it be a surprise.
I've purchased two suitcases and over time I'm buying little things to pack in the suitcases and keeping them new until I can use them for that trip. Hope I have some money left by then! I was hoping to be well enough to go the summer of 2013, but it is looking more and more like 2014 or 2015. (My turning the corner seems more like my taking the long way around a slow curve .) I hope not... I certainly hope it is not 10 years either, but I will take what I can get.
So maybe we'll both be well sooner than we think and run into each other!!! Stranger things have happened.
Claire
P.S. I think some of us when well ought to organize an MP dance (I keep calling it a Prom or a coming out party) every other year somewhere in the world. Of course, they ought to be coordinated with MP conferences that are going on (oh yea! that's what that dancing was on one of the vimeos)
Last edited on Fri Jan 15th, 2010 04:30 by eClaire
____________________
42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Jan 16th, 2010 18:49 |
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We haven't had a get-together for quite a while... a dance might be a bit ambitious, not just from the ability to balance, but also from ability (or lack of it) for the average Th1 to mix 
The 2005 and 2006 conferences took a huge amount of organization, and quite a bit of financial risk, and so I haven't been rushing to repeat them  But a number of regional get-togethers, of whatever format, might be a good idea to start thinking about. My own schedule in 2010 is not going to be as busy as 2009, and we should start thinking about some regional gatherings, I think. I need to meet you all
I have had some suggestions from the Europeans, but why not some ideas from the US? From Australia? Where are the centers of MP membership? Or maybe we should just look at teleconferencing?
What do you think?
..Trevor..
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Barney
Support Team
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Posted: Mon Jan 18th, 2010 14:19 |
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Trevor,
Are you going to ask this on the Study Site for all to see? Not many people on MP know of the Lifestyles or how to get on this site.
Get togethers would be great! I was at every conference and would love to be involved.
Barney
Last edited on Mon Jan 18th, 2010 14:20 by Barney
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HeatherK
Member
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Posted: Mon Jan 18th, 2010 15:47 |
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I like the idea of regional get -to -gethers, but realistically I would not be able to attend ...YET...
Claire: My second choice of a trip is a Greek Island Cruise!! For now I cruise the internet and love the pics. Just google Greeks Islands and then in the top left menus of the search results , click on Images... fun!!!! This is how I ' travel' in Scotland. I like your idea of buying suitcases..... incentive... wow.
Heather.
____________________
CFS for 5 yrs+ /started MP Sept20/07;( 25-D=24ng/ml, 1,25=47.5pg/ml.).. Dec/07(25-D= 14.4 ) Started Phase Two Mar 4/08; Dec 09(25D= 6); In blackout home/ wearing NoIRs/ Presumed celiac, wheat,dairy free.
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
| Status: |
Offline
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Posted: Mon Jan 18th, 2010 19:11 |
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I'm not ready to attend any get togethers yet either, but it would be nice if they got going... officially. I know when I am well enough to have reliable, sustainable energy, I'll be more than happy to be involved in the process. I think combined with conferences--including medical conferences--we, as a recovering group, could be a real testimony to the MP. The researchers and docs attending could be invited to the dances (whatever) where they could ask one person after another about their experience on the MP. How sick they were, how far they've come.
Claire
Heather, I have toured the Greek islands in the same way. I love going on all the various maps and various online images. For a while, the image on my computer was from Santorini.
Last edited on Mon Jan 18th, 2010 19:13 by eClaire
____________________
42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Debz
Member
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Posted: Thu Jan 21st, 2010 16:37 |
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Dr. Marshall,
Dr. Ken Havrelock mentioned to me that he would like to go to one of you're conferences. I was thinking of Cadillac ski resort lodge where you can bring crock pot food, plenty of parking, skiing for the docs/party for us. Just make a reservation date on the MP calendar, for Saturday and Sunday at the Holiday Inn (bring a humifier). There are movies, restraunts, fresh air, and it is peaceful. Medical personal hang out there and the resort is 2hr away from all the lower Mi cities, and it is next to a national forrest with snowmoblile trails.
They get to know us personally, ~Debz
____________________
Dx-Sarc(collagen disorder)/Herpes Whitlow 03, Neuro,sinus,Hyster,ear. Mr Muscle-hayfever,acute/chron bronchitis, pneumonia,hilar adenopathy,liver tumor&lesion,lg spleen,strep throat,thrush, psyco Mp:4/8/08 mino & Noirs,4/28/08 benicar
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Jan 21st, 2010 16:59 |
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Debz,
The sunlight, snow, and high-altitude, might cause difficulty for some of our members, however
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marysue
Foundation Staff
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Posted: Thu Feb 4th, 2010 08:18 |
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Regional get-togethers do sound like a good idea. Regardless, I think that teleconferencing and/or webinars occasionally would be helpful too. I know it's not the same as being able to gather in person. However, there will always be a large number of people who are in no condition to travel primarily due to light sensitivity, herx, or both. Those who are able to travel will--and I for one, look forward to that possibility. But, in between, the teleconferences would be a way for folks to share, ask questions and be updated on ARF/MP progress.
Marysue
____________________
CFS/FM '95; restrict light/D Oct08; 125D70 25D30 Feb09; Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09) Marysue on Benicar
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
| Status: |
Offline
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Posted: Thu Feb 4th, 2010 17:36 |
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Hey, I'm looking for a party when I'm well enough to party too!
And after years of isolation, who would I want to party with but friends who have accompanied me on my MP journey.
Hugs, Claire
____________________
42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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marysue
Foundation Staff
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Posted: Thu Feb 4th, 2010 18:35 |
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That is so true Claire. It's always more fulfilling and rejuvenating to be with people who truly know what we've been through. I look forward to being there too when you are finally able to celebrate!
Marysue
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CFS/FM '95; restrict light/D Oct08; 125D70 25D30 Feb09; Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09) Marysue on Benicar
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Lee
Member
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Posted: Fri Feb 5th, 2010 15:19 |
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High up on my Bucket List is to get to meet as many MP'ers as I can ... Lee
Last edited on Fri Feb 5th, 2010 15:20 by Lee
____________________
2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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