ATAXIA MEETING
Tuesday, October 21, 2014
Independence LIBRARY at 6:30 pm
We do have a guest speaker, Lori Nagy, who is an independent insurance agent, who specializes in health care. With Medicare enrollment beginning Oct. 15 and running for 6 weeks, the window is tight if you are contemplating changes. She also specializes in the Affordable Care Act. She is unbiased and has really helped multiple friends & family of ours make sense of a very complicated subject. For example, one person was quoted over $800/month for coverage on the phone and she was able to get it for under $100/month for the same plan by just talking to the right person. Like Ataxia, every case is different. She will cover general guidelines in her talk and meet individually with folks as needed.
As always, family, friends and care-givers are welcome.
- Carmen
Website for the National Ataxia Foundation Northeast Ohio area support group
Monday, October 13, 2014
Tuesday, September 16, 2014
Upcoming meetings Tuesday, September 23 at 6:30 Tuesday, October 21, 2014, 6:30-7:30
Social gathering- suggestion, Appleby’s Rockside Rd Tuesday September 23 at 6:30
Next meeting- Independence Library Tuesday, October 21, 2014 6:30 - 7:30
Next meeting- Independence Library Tuesday, October 21, 2014 6:30 - 7:30
Tuesday, July 29, 2014
August meeting
Our next meeting is Tuesday August 26 at 6:30 at the Parma-Snow library. We will likely have several new members, have interaction, and demonstrate some of the exercises Tom passed along. The room is large and the library allows us to bring in some equipment. The meeting will be interactive, so dress accordingly. Participation will be strictly voluntary but you will gain beneficial knowledge either way.
Saturday, April 5, 2014
Social Event
Social event- Tuesday, April 29, 6:30 at Applebee's at 4191 Rockside Rd, Seven Hills, OH 44131; (216) 328-0376
May Meeting info
Hi all,
As indicated our theme for the May meeting is education. Since so few local doctors know much about Ataxia, bring your articles which discuss the disease. its symtems, treatments etc. Since we have not scheduled a speaker, discussion is open. Sue attended the annual conference in Vegas, and she has much information to share with us.
Dr. Tom Clouse schedule is below:
D
Cleveland, OH Jul 23 – Aug 20
Wheaton, IL Aug 21 – Sep 18
Fargo, ND Sep 19 – Oct 17
St. Louis, MO Oct 18 - Nov 17
We still lack a location. His needs are below:
A place for us to work. A large room with lots of floor space and an empty wall or two.
i. An empty 20 x 40 foot room works but bigger in this case is better.
ii. The floor needs to be clean, hard and smooth. Tile, concrete, laminate, hardwood or commercial grade
carpeting
are ok.
iii. Normal carpet in the normal home has too much cushion for these purposes.
iv. Open floor space! We require open floor space. And don't forget the bare walls to at least head high.
The larger the open space that we have to work in the better because we will be using the floors and the wall along with balls, like throwing, rolling, hitting and kicking them… open space.
v. Try your best to keep me out of a place with pets. I have allergies to cats, dogs and especially mold.
vi. My reaction to them is "brain fog" and fatigue and it screws me up for a couple days after a good dose.
vii. The room doesn't need to be fancy, just functional, and if it's not empty we'll have to make it that way.
viii. If needed try asking your church, YMCA, health club or whatever.
ix. Your garage is ok if that is where we have to be but without the criteria above we're wasting time.
x. We will be doing some outside work towards the end of the sessions and I'll pick that area when I get
there.
xi. An outside area for the beginning stuff doesn't usually work out very well. Trust me.
Ø My schedule while I'm there is very flexible (with very few exceptions) and you are normally the
only reason I'm coming there.
i. I will find a RV park within your area to set up my motor home while I'm there. I'm always home that
way.
ii. For those areas where there is more than one of you please try to get one place for all of us to work out of
if possible. (individual sessions)
iii. An exception to my flexibility is I normally don't care to work late in the evenings.
iv. With some exceptions I normally work with you every other day.
v. The off day is for you to process the information and practice and use what we cover. You often also
need that day to recover physically.
vii. Each session will be somewhere between 1-3 hours depending on your "stamina" and how many people
I'm working with that day.
viii. I video record as much of this as I can and therefore will provide you with a "release form" to sign to
document your approval of the video recording.
ix. The video recorder is another reason we need the bigger room.
x. The videos are also the documentation and proof I need for the people we're trying to show "this stuff
works".
xi. What can you do before I get there? Tone up, exercise and get off your butt if you aren't already.
xii. What's the one big comment I'm routinely hear going into the 2nd session? "I didn't realize I was that out
of shape."
xiii. Are we going to be doing strenuous stuff? NO.
xiv. We're going to be working on the basics of movement and how to apply them in everyday life.
xv. When I'm in an area where there are a number of people wanting to work with me I often work them in
both group and individual sessions.
xvi. How many sessions will you need? That depends on where you are in your disability and movement
issues, but it's normally 5 or 6... but could be more and it could be less... and we won't know until I get
there and see what I'm working with
If you have a contact that can help, let us know. The other question is how many will attend? The Ataxia Foundation will email contacts locacally anoucing Tom's visit. So it's still open.
More at the meeting.
Best,
Carmen
As indicated our theme for the May meeting is education. Since so few local doctors know much about Ataxia, bring your articles which discuss the disease. its symtems, treatments etc. Since we have not scheduled a speaker, discussion is open. Sue attended the annual conference in Vegas, and she has much information to share with us.
Dr. Tom Clouse schedule is below:
D
Cleveland, OH Jul 23 – Aug 20
Wheaton, IL Aug 21 – Sep 18
Fargo, ND Sep 19 – Oct 17
St. Louis, MO Oct 18 - Nov 17
We still lack a location. His needs are below:
A place for us to work. A large room with lots of floor space and an empty wall or two.
i. An empty 20 x 40 foot room works but bigger in this case is better.
ii. The floor needs to be clean, hard and smooth. Tile, concrete, laminate, hardwood or commercial grade
carpeting
are ok.
iii. Normal carpet in the normal home has too much cushion for these purposes.
iv. Open floor space! We require open floor space. And don't forget the bare walls to at least head high.
The larger the open space that we have to work in the better because we will be using the floors and the wall along with balls, like throwing, rolling, hitting and kicking them… open space.
v. Try your best to keep me out of a place with pets. I have allergies to cats, dogs and especially mold.
vi. My reaction to them is "brain fog" and fatigue and it screws me up for a couple days after a good dose.
vii. The room doesn't need to be fancy, just functional, and if it's not empty we'll have to make it that way.
viii. If needed try asking your church, YMCA, health club or whatever.
ix. Your garage is ok if that is where we have to be but without the criteria above we're wasting time.
x. We will be doing some outside work towards the end of the sessions and I'll pick that area when I get
there.
xi. An outside area for the beginning stuff doesn't usually work out very well. Trust me.
Ø My schedule while I'm there is very flexible (with very few exceptions) and you are normally the
only reason I'm coming there.
i. I will find a RV park within your area to set up my motor home while I'm there. I'm always home that
way.
ii. For those areas where there is more than one of you please try to get one place for all of us to work out of
if possible. (individual sessions)
iii. An exception to my flexibility is I normally don't care to work late in the evenings.
iv. With some exceptions I normally work with you every other day.
v. The off day is for you to process the information and practice and use what we cover. You often also
need that day to recover physically.
vii. Each session will be somewhere between 1-3 hours depending on your "stamina" and how many people
I'm working with that day.
viii. I video record as much of this as I can and therefore will provide you with a "release form" to sign to
document your approval of the video recording.
ix. The video recorder is another reason we need the bigger room.
x. The videos are also the documentation and proof I need for the people we're trying to show "this stuff
works".
xi. What can you do before I get there? Tone up, exercise and get off your butt if you aren't already.
xii. What's the one big comment I'm routinely hear going into the 2nd session? "I didn't realize I was that out
of shape."
xiii. Are we going to be doing strenuous stuff? NO.
xiv. We're going to be working on the basics of movement and how to apply them in everyday life.
xv. When I'm in an area where there are a number of people wanting to work with me I often work them in
both group and individual sessions.
xvi. How many sessions will you need? That depends on where you are in your disability and movement
issues, but it's normally 5 or 6... but could be more and it could be less... and we won't know until I get
there and see what I'm working with
If you have a contact that can help, let us know. The other question is how many will attend? The Ataxia Foundation will email contacts locacally anoucing Tom's visit. So it's still open.
More at the meeting.
Best,
Carmen
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