Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

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Kennedy's Disease Chat Transcript   03-03-12

Topic:  Open Forum

Host:  Lou Tudor

 

loutudor
Good morning Gary
Gary_KC
Good Morning Lou.
loutudor
I was hoping someone would enter the chat room!  :)
Gary_KC
It is a fine weather with 36 degrees in Kansas City this morning.
loutudor
That's good to hear...I've been checking with friends and family in the tornado states...
Gary_KC
Yes, it was some tonados in med-west in winter.
loutudor
Bruce lives in N GA and said the storms were all around him, but thankfully none hit his imediate area
loutudor
I have some business in IN next week...hope the weather stays clear!
Gary_KC
I did not know tonados in south area too.
loutudor
Yes, Spring is the most vulnerable time
Gary_KC
We don't have snow and cold weather this winter. Amazing!
loutudor
A friend in Louisiana told me their winter is mild, but it means lots of bugs in summer, due to no freeze
Gary_KC
What happens others this morning???
loutudor
I don't know...how are you doing?
Gary_KC
We are told the same. We may have lots of bugs this summer. :-(
loutudor
Did you attend the KDA conference in Baltimore last Nov?
Gary_KC
No, I did not. I don't have good health for travel.
loutudor
Sorry to hear you can't travel...that's the situation for many of our members
loutudor
Do you have a scooter?
Gary_KC
Yes, I have a scooter and two powered wheelchairs.
Gary_KC
One is portable powered wheelchair and another is regular size.
loutudor
The chairs are such a blessing...all my Dad had was a manual wheelchair...made going out so much more difficult
loutudor
Do you have a vehicle which carries your chairs and makes for esy access?
Gary_KC
I have two manual wheelchairs too.
loutudor
May I ask your age?
Gary_KC
I am 55 years old.
Gary_KC
I disabled 9 years ago because I could not stand up from chair level.
loutudor
My son is in his forties and uses a scooter and his car is equipped inside to carry and power lift...sure does help!
Gary_KC
That is great. I can't drive car any more.
loutudor
Gary, have you experienced any breathing problems?
Gary_KC
My legs are so weak.
Gary_KC
I don't have any brething problems yet.
loutudor
Has your Dr recommended any physical therapy?
Gary_KC
I visit an MDA/ALS clinic in this area once a 6 months. They don't suggest me the physical therapy.
loutudor
Many KD men find that some exercise (depending on what is appropriate) is very helpful
Gary_KC
I have weekness for my jow, neck and shoulders.
loutudor
Yes, I understand.  Do you find it helpful to have the KDA for communication and guidance?  I wish my Dad would have had this...
Gary_KC
I like exercise plans that Bruce made.
loutudor
Bruce has done an excellent job of sharing his experience and all he has learned thru investigation.  We are all very fortunate to have his voice!
Gary_KC
I tried some light exercise but I alwasys feel fatigue the next couple of day.
loutudor
You may need to start slower and work up your time as tolerated.
Gary_KC
I am sure that the light exrcise help to maintain our muscle.
loutudor
It really does, Gary.  My son has purchased a low bicycle that he pedals with his arms...
Gary_KC
I like Bruce's trial for dutasteride with exercise. I am taking the dutasteride for two years too.
loutudor
He has also lost some weight due to changes in his diet.
loutudor
Have you found any results from the trial?
Gary_KC
That is a good point. I have gained lots. I need the diet too.
loutudor
It has been over a year since he has gone to a fast food restauant!  He also gave up coffee and sodas...drinks green tea
Gary_KC
I don't drink soda either.
loutudor
The diet changes (lean meat, fish and vegatables, brown rice and tea, have given him clearer thinking in addition to better mobility!
Gary_KC
It is much easy to transfer from wheelchair to bath bench, bed and scooter if I lise my weight.
loutudor
Oh yes, I agree!  Do you live with someone who helps you?
Gary_KC
My arms and sholders are weak too.
Gary_KC
Yes, I aminly eat fish, chiken, soybean, and lots begitables.
loutudor
I suggest you ask your Dr at the MDA clinic for physical therapy to get you started and strengthen to be able to do it on your own...
Gary_KC
Thank you for your suggestion. I will talk to my doctor next visit.
loutudor
Sometimes we have to ask for what we need...it isn't always offered, unfortunately.
loutudor
Do you live a long way from the clinic?
Gary_KC
It is about 30 minutes drive.
loutudor
That's not too bad...some of our members have a 2 hr or more drive...
Gary_KC
I understand we don't have many MDA clinics.
loutudor
They are spread out in most states
loutudor
I assume the MDA has given you all the assistance in getting wheelchairs, lifts, etc..?
loutudor
Connection reset by peer
Gary_KC
Yes, they hels us very friendary.
loutudor
That's wonderful!
loutudor
Gary, it has been my pleasure talking with you this morning.
Gary_KC
I had a good chat with you this morning too.
Gary_KC
Thank you very much.
Gary_KC
Let's talk at the next chat. Please take care. Bye.
loutudor
Take care and here is my e-mail address   This email address is being protected from spambots. You need JavaScript enabled to view it.   If you want any more info about my son's lifestyle and diet changes
loutudor
Bye for now  :)