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Meeting dates

Directions

Minutes

Contact Bill or Maureen

Please note this is written in reverse order, with latest dates first....

2004 Tentative Meeting dates

We will be meeting in the Southdale Library and can only make arrangementrs for the room quarterly. AND the library and the county have first dibs on the meeting room, should they need it on those dates.

Tentative dates are:

August 7 - Definite date. Dr. David Walk will Speak. Check in from 9:30 until ten. Meeting startes promtsly at ten.

November 6- Hope to have OT and PT to speak

All meetings are on Saturday mornings from 9:30 or ten 'til noon

Please contact Bill or Maureen with any questions about the group- see below.

Directions to the Southdale Library

7001 York Avenue South

Edina, MN 55435-4287

 

The Support Group will meet on the second floor meeting room.

 

 

From Highway 62 Eastbound or Westbound

Exit Highway 62 at Xerxes Avenue. Go south on Xerxes. After a few blocks the road curves to the right and becomes York Avenue (at 66th Street). Cross 66th St. and follow York Avenue to 70th Street. (Southdale Shopping center will be on your right.) 70th Street is the third traffic light after 66th Street. Turn left onto 70th, enter Library parking lot on right just before the top of the hill. Library is the white building on tall round pillars.

 

From Highway 100 Southbound

Exit Highway 100 at 70th Street. Take 70th St. East to York Avenue. The Library will be straight ahead. Cross York Avenue and enter the Library parking lot on the right just before the top of the hill. . Library is the white building on tall round pillars.

 

From I-494 Eastbound or Westbound

Exit I494 at France Avenue. Go North on France to 70th street. Turn right onto 70th Street and continue to York Avenue (first traffic light). Cross York Avenue and enter Library parking lot on right just before the top of the hill. . Library is the white building on tall round pillars.

 

From 35 W Southbound

Take 35W to Highway 62 West. Exit Highway 62 at Xerxes Avenue. Go south on Xerxes. After a few blocks the road curves to the right and becomes York Avenue (at 66th Street). Cross 66th St. and follow York Avenue to 70th Street. (Southdale Shopping center will be on your right.) 70th Street is the third traffic light after 66th Street. Turn left onto 70th, enter Library parking lot on right just before the top of the hill. Library is the white building on tall round pillars.

 

From 35 W Northbound

Take I-35 W to I-494 West. Exit I494 at France Avenue. Go North on France to 70th street. Turn right onto 70th Street and continue to York Avenue (first traffic light). Cross York Avenue and enter Library parking lot on right just before the top of the hill. . Library is the white building on tall round pillars.

 

Meeting Minutes

Minutes Twin Cities CMT/HNPP Support Group Meeting

May 8, 2004

Southdale Library.

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32 People attended

9:30 - 10:00 was sign in time. A time for people to sign in, get a refreshment, check to hand out table and talk with others.

We began the meeting at 10 am.

Jodi Castillo from MDA spoke first. She encouraged all those who have not registered to register with her. Today. MDA can assist with leg braces and wheel chair costs, visits at MDA sponsored clinic, getting equipment form the equipment lending library and Quest magazine. We can register in person at the meeting, via phone, or by taking a form home to complete.

‘Stride and ride'- one of the largest fund-raisers for the area will be help July 10th. Jodi was looking for us to form a team/group. ‘Stride and ride' is one fo those fundraisers where you get pledges in the form of an out right donation or a certain amount per block/mile that you walk or ride. We need someone to head this up. No one spoke up at the meting, but several took information about it.

Summer Camp starts the first full week in June. MDA is looking for volunteers to come for the entire week. Must be at least 16 years old. You can email Jodi if you are interested (minneapolisservices@mdausa.org).

Next, we went around the group identifying ourselves and sharing something we had learned since the last meeting. The following are some, but not all, of what was said:

Pt 2-3 times a week has helped to keep muscles active

Try to stay active( I feel better, but know when to stop

Don't' give up

I can dance in braces

Working out once a week is my limit

Keep busy as I can, look for mor answers

Do lots of dancing- My balance is better when I am dancing then when I am walking as I have someone to hold on to.

Got handicap parking sticker

Exercise class 30 minute, 3 times a week- keep muscles up so able to do more

Raised bed gardening is great - height determined by gardener. This one about table height and 14 inches deep

Wear hiking boots

Schuler shoes really good and comfortable Dale there is a specialist worth seeing.

For quite a few, fatigue was a big factor and daily rests/naps were needed.

Take clothes home to try them on, rather than in a dressing room at the store.

There was a discussion on Statin drugs, especially Liptor. One person had sore legs and could barely gt out of bed after a month on the drug. Others have taken it for years with no problems

Jenny Walsh, Program Director form Courage Center Sports and Recreation Department was our speaker. She spoke about the adaptive Recreation programs they offer. Their goal is to"enable people to get out into the community and have fun".

Racing via a cycle

Track chair is a racing chair. Both ambulatory and W/c athletes use them for racing. They do go to some national competitions. The cycle is custom fit to you. On the track, the cyclers can really fly. While a runner in a marathon may take 2-3 hours, athletes using these chairs are done in 1 ½ hours maximum.

Down hill Skiing is offered in 5 sites in Minnesota. It is their largest program. One can stand and ski with special poles called outriggers. The poles have sort of shoe-like attachments on them which help with balance.. They also have the ‘sit ski'. It looked like a low chair on skis. For this one sits in it and minor body weight shifts turn the ski. There are no brake on a sit ski, so an instructor follows behind with a rope tethered at all times and uses the rope to stop the sit ski. Ski equipment is loaned out. There are 250 instructors in the program to help you learn t adaptive ski.

Biking- Jenny showed off a three wheeled low sitting bike with hand pedals for the bike gears and hand brakes. She said bike vendors have a full range of bikes available and they are geared to individual needs. The bike club meets every Wednesday and they go out on various bike trails for about 8 miles. The is a fast group and a slow group. The bikes coast start at $2500 on up. Courage center has some bike available theat they lend out for the season. She recommended using an orange flag is riding the low bikes.

Therapeutic Pool heated to 92 degrees. They offer swim lessons, individual lap swims, therapeutic exercises and 2 different programs with oriental sounding names I won't attempt to spell. There is also competitive swimming for kids. Pool has stairs to get into it as well as a ramp to take a special wheelchair into the pool. If you use a wheelchair , you would transfer to the pool chair to get down into the pool. There is dressing assistance if needed and unisex and well as men's and women's dressing rooms.

Fitness Center is new, opened less than a month. They offer a full range of equipment geared for the disabled,

Wheelchair basketball- programs for kids, adults, men, women and the visually handicapped. This program is open to anyone who is ambulatory also.

Sled hockey- very low chair type on ice skates. Use short hockey sticks with picks.. The picks grab the ice to move you around.

Martial Arts. A father daughter team of instructors has been teaching this for ten years. They will accommodate whatever ability. Good for balance skills and self confidence. There are tournaments. Even in a chair, one person earned a black belt

Shot put,

Discuss

Softball,

Adaptive Tennis

Archery- year round in a heated garage.

Each of the programs costs about 40-50 dollars for a 10 week session, except down hill skiing. Down hill skiing is 9 weeks of lessons for $150. This includes use of equipment and lift tickets. The equipment is lent out for almost all these programs.

After Jenny spoke, the group moved about, and talked among themselves until breaking up at noon. Many commented that this was the best part.

Our next, meeting is Saturday August 7th. Check in from 9:30-10:00. We will start promptly at ten.

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Minutes Twin Cities CMT/HNPP Support Group Meeting

January 31, 2004

 

Southdale Library.

 

24 Individuals braved the 12 below zero weather, and prediction of snow, to attend the second meeting of the Twin Cities CMT/HNPP Support Group.

 

The meeting was held in the Southdale Library. The room is about 4-6 times the size of the room at the University where we first met. There was plenty of room to spread out. THE elevators to the second floor are right inside the North door. The accessible bathrooms are just a few feet away from the meeting room. All in all a great place to meet.

 

Multiple handouts were available in the back of the room.

 

Dr. Parry was due at ten A.M. to answer more questions. While we waited for him to arrive we again introduced ourselves as about a third of the group was new.. Many were able to add quite a bit to their previous stories.

 

Dr. Parry began his session by talking about the three main types of pain that we experience.

 

First was Pain due to motor nerves

Pain caused by motor nerves produces cramps or spasms. They are very common. The muscle tightens up, maybe a knot. One may actually see it. Common times are first getting up in the morning or cold hands. A sudden uncontrolled stretch causes the cramp. Silly as it may sound, a prolonged stretch will help ease the cramp. As the disease progresses, foot cramps disappear as the muscles weaken.

Treatment-

Many patients have used Quinine and swear by it. But studies show it doesn't work.

 

Vitamin E is something safe to try for cramps. Its highly effective and virtually no risks ( there may be some loose bowels, but people with CMT tend to be constipated anyway). Highest dose in one pill is 1000 International Units (IU). If the cramps are mostly at night, start with 1000 IU at bedtime. If cramps more persistent, try 1000 IU two times as day. Can increase the dose up to 2000IU or two pills two times a day maximum. But if that doesn't' work then stop. Don't go any higher than the 2000 IU twice a day

 

Secondly, Pain due to sensory nerves

Sensory Nerves cause the burnings stabbing, electrical shocks kind of pain. It is the hardest of all forms of pain to treat. If you had a broken leg the pain might be 8 out of 10 and narcotics would be quite effective. But for a nerve pain at 8 out of 10, narcotics would not be nearly as effective as for the broken leg.

Treatment

Antidepressants are effective and some seizure drugs are somewhat effective. Antidepressant drugs are used to treat the pain . Many patients think we are saying they are depressed when we prescribe the antidepressant drugs. We aren't saying they are depressed. We are using them to treat the pain.

 

Third is Pain from Strains and Sprains from joint instability/muscle strength

The stability of the joint is dependent on the strength of the muscle. Braces are the best help. Wear them early to prevent excess movement of the joint. The excess movement leads to pain of the joint capsule or tendons which eventually leads to arthritis.

Treatment is bracing

 

When you walk funny you strain all different body parts. When you first get braces you will walk worse at first. Stick with it. I tell people to start with 30 minutes at a time at first until you get used to them. Braces shouldn't hurt.

 

The sprains and strains are best treated the anti-inflammatory drugs Vioxx Celebrex Motrin Naprosyn even Aspirin works well, though it all these can lead to stomach problems,

 

Regarding exercise. Definitely not a ‘no pain- no gain situation. Choose different exercises you can do. Do it in small amount and repeat frequently. Has to be a minimum of 3 days a week for any good to come of it. 4-5 days a week would be better. Preferably not every day of the week.

Water aerobics are good. Gives supportive resistence.. Prevents pounding and jarring of the joints. But you have to work harder. Just try walking back and forth across the pool twice and many will be in a sweat. This hard work

 

Overuse is a problem

 

Dr. Parry then answered questions on a variety of topics. How the question was asked has been altered to protect the identity of the person asking the question.

 

Eyesight

CMT rarely affects the eye muscle or muscles of the larynx. Extremely rare to lose vision. Double vision means the eye muscle are not working together. We can all make ourselves see double.

 

Alcohol use.

The drug toxicity list mentions alcohol as something to avoid

To damage the nerves, one would have to drink ½ to 1 full bottle of hard liquor a day. If malnourished, the amount would be somewhat less. But you would need to drink enormous amount each day in order to damage the nerve.

In patients with nerve problems, their balance is not good. They need every one of their faculties honed to the finest edge in order to maintain balance. Even after two drinks, with a blood alcohol level at .04, wouldn't want to walk or drive,. Someone with CMT would probably be on the ground.. Besides people with CMT walk like a drunk anyway. The occasional drink or even one every day is not harmful to the nerves

 

Emotional

IS getting down or depressed every now and then OK?

 

Parry responded that we are dealing with a lifelong illness and it's a damn nuisance. Trying to deal with it every day can be very wearing. You cope and cope and cope and then something sets you off and you fall apart for a bit. That' a natural reaction to dealing with a chronic illness.. Grieving is a process and a healthy process. When it disturbs sleep or appetite (eating too little or too much) or snapping at everyone then it becomes pathological. Women love to feel sad. Sadness is a healthy emotion.

 

Journaling

What about Journaling as a way of coping?

Parry said he was ambivalent about journaling. It works for some people. Others get almost pathologically introspective, They examine every twinge. Writing is more right for women. Be careful that it doesn't become the reason for your existence.

 

Fibromyalgia and CMT

Fibromyalgia is a syndrome. And what is a syndrome? . A syndrome is a collection of symptoms and signs that have certain characteristics. In fibromyalgia most hurt, have pain in their muscles, trigger points and burning and tingling. We really don't' know what it means.

In CMT we get those symptoms more than the general population. Is it fibromyalgia? I don't care. You treat the symptoms. Symptoms are managed with Physical therapy, massage, exercise. Heat ultrasound. Chiropractors are extremely helpful for this.

 

How often to see the Neurologist.

Parry says minimally once a year. He wants to see and know his patients . Not just see them when something has happens. Also things continue to be learned. New treatments or approaches come up, and if you see the neurologist less often, you won't hear about them..

 

Honeybee Venom.

This enormously controversial, Studies show it s doesn't work

This all began about 30 years ago and continue to surface from time to time. Bee venom has never bene shown to be beneficial. Don't underestimate the power of the mind. The more elaborate or painful the procedure the more powerful the perception that it will work. If anybody persuades you that it will help, it will.

In ALS patients (Lou Gehrig Disease) patients on placebos all lived longer than patients who were not in studies

 

Numb hands and Carpal Tunnel Syndrome (CTS)

Numb hand can be CTS. There is as slightly greater risk of CTS.

 

Blaming everything on the CMT

There is a tremendous tendency to blame everything that happens to you on the CMT. We (including Parry) need to be constantly aware of that tendency and look for other things as well when something goes wrong.

 

Next Meeting is May 8th from 10am (sharp) to12, noon, in the Southdale Library. Check in begins at 9:30.

 

Note: We have started a lending library.

 

If you have books in any way related to CMT ( such as disability, coping and grieving) and wish to donate them to our library, please bring them with you next time. Please call or email Maureen ahead of time ( phone 651-690-2709 email mphorton@qwest.net). She needs the name of the book and author for a very easy to use sign out sheet.  

 

 Contact Bill or Maureen

2003 Schedule

The frst meeting of the Minneosta- Twin Cities CMT/HNPP Support group will be held Saturday Spetember 27th form 10a.m. unitl 12 p.m.