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Functional

Short term getting around, I'm slow and steady. Long term, I use a scooter. Depending on whether I'm tired or not, my fine motor skills come and go. I rest when I'm getting tired, even if it's just 20 minutes. Then I get up and try to get moving again. My body when exhausted will just stop moving...my voice get hoarse and slow...someone could just push me over. Kind of like tipping a cow.

I try to listen to my body almost like the motor on a car. We travel off and on with our business. When we do, I plan on resting the first day that we get there. We have a support network that I am still able to pour in to. At times I need help and haver learned to ask for help.

Heat, staying up on medication and supplements, stretching, pressure point massage therapy, attitude adjustments, good friends and family, help with days that are difficult and playing half as much as I work, since EVERYTHING is effort...go easy on myself.

I try to focus on what I can do and not look back on what I use to be able to do.

Thanks for asking. How about yourself?:cool:
 
Frizzel,

I'm very happy to hear at how well you are doing. It's fantastic that you can still travel for business and that you're still working.

Do you use a walking device to get around when not using your scooter? Do you have much limb pain? I noticed that you said you get point pressure massages etc. I ask because my mom's biggest issue right now is pain.

Thanks for sharing.
 
massage

Hot baths and massage in the pressure points help. I also heat up a sock with white rice in it in the microwave so I can put it on the areas that hurt. Talk with your doctor to see if there isn't something you can learn to help with the pain for you mom. For me? HEAT! Not too hot but just enough.

I use a four pronged cane and then use a scooter for long distances. I also am very slow. The tortise crosses the finish line.

Baclofen, heat and quinine help with pain. Also stretching and pressure point massage therapy. Hope that helps.

Frizz
 
Frizzel,

Thanks so much for your reply.

My mom does the hot bath with epson salts and that helps. She is taking balcofen but that is ineffective. The doctor said she is extremely spastic. He says that we really have to try to tone down her muscles. She has been prescribed zanflex and will be starting it as soon as she finds a pharmacy that carries it. We've tried about 6 with no luck. I'll be going to some bigger ones today.

She did physio yesterday and it went well. The therapist had her use a walker (wow!) and she walked much better. She said that most of my mom's pain is probably due to the fact that her knees are caved in because of the way she is walking. They are going to help her strengthen and stretch her legs. As for the walker, I personally think the quad cane would be enough.

Thanks again.
 
Time to Update Everyone!

Thank you all for the great responses and recommendations. I appreciate you time and insights.

Well, I fired my first PT group, canceled my future appointments and was just going to go to the YMCA.

After conversations here, on other forums, with friends, and my wife, I decided to try it again and another PT clinic on recommendation.

I started there on Tuesday with a second session on Thursday. Man am I psyched! These people are awesome and in no way in the same category as my first PT experience. I just love my therapist and how I'm being treated. A world of difference.

Nothing like being challenged physically and in a very good productive way. I just can't say enough good stuff about this new experience.
 
Craig,

Thanks for the update and for giving the PT another round. The difference in groups seems dramatic and I'm very happy for you. It's nice to know those folks are to be found.

Zaphoon
 
Pt

Most physical therapist deal with sports injury patients. I am going to one now that is a stroke specialty center located in the hospital. I'm getting disillusioned by the whole thing because I'm not seeing great results. I have repeatedly asked my PT is I can cut the sessions from twice a week to once. And she says no. I got mean and she said I didn't have to come this Friday. Also, she keeps accussing me of not doing the excercises a home like she has wanted. She wants me to get new leg braces to help with a hyper extending knee. Should I?
 
Update!

After firing my first out patient PT, which this thread subject is based upon, I was referred by my wife's friend at work to a new PT group. The difference is night and day. The new provider is awesome, professional, compassionate, very knowledgeable, the practice is multifaceted, and well rounded in services provided.

I spend an average of an hour and 15 minutes per visit and they work me out very well. The exercises are very focused and build on each other to reach a specific goal. I was just discharged this last Thursday and everyone can see a dramatic difference in my balance and gait. I actually road a recumbent cycle at level 4, 10 minutes, 82 rpms, and went 2.4 miles. What progress from barely being able to sit and balance on the thing in the beginning.

I will now transition to the local full facility YMCA to start aqua therapy 3 times a week and my PT will visit with me initially to coordinate with my personal trainer on transitional exercises and equipment. With my new membership I will receive three one hour sessions with a personal trainer to evaluate and learn the proper equip/exercises.

In contradiction to my original post here, quality and professionally administered physical therapy IS what it's cracked up to be.
 
Good for you!

That is great that you didn't give up! Congratulations!
 
So glad you tried a different group. My husband is newly diagnosed with PLS and is a PT as well. I know that everyone has different skill sets and the caliber of care can be different at each clinic just as it can be with any other discipline. So glad that someone was able to redeem PT in your eyes. :p The good ones are all about helping the patient, not lining their pockets and there are plenty of good ones around. I wish you all the best!
 
It's great that your husband is a PT. He will be the best person to help himself!
 
Hi and welcome Okiemom and my friend Sral,
I think that we all are brought to this board for so many helpful reasons. So much we can share and compare, I often get so sad when I think of these diseases before we could so freely communicate..
 
My husband went to PT for 12 weeks about a year ago and hasn't gone back for same reasons everyone has already pointed out, the cost and the fact that th exercises can all be done at home. Though I must say we haven't been as good about it. He can not pick his left leg up so I have to help. I like the suggestion of the rope and sitting against the wall. We'll have to try that. My husband is in no way lazy...he was a major athlete and work out nut before all of this happened. Now he is limited to a recumbent bike and hand weights. It is very hard for him to use the bike but he uses it for about 5 - 10 minutes every day. That's the most energy he can manage at one time.

Craig, if you have a link to the website you found the illustrations on could you share it with the group? thanks.
 
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