New member saying hi!

[gbrown]

I started reading this forum a couple of weeks ago and like it better than any I've read. I started having ALS symptoms in the summer of 01' and was finally diagnosed with ALS by Dr. James Caress at Wake Forest University Medical Center in Winston Salem, NC, in July 06'. I worked until August 07' and retired after my speech got so people had trouble understanding me. I am now on Medicare Disability.
My disease is very slow progressing, but it does get a little worse each year. With the help of my loving wife and caregiver (bless her), we designed a physical therapy program that I can use every day and we modified the inside of our house to accomodate what I need. I have also started using some supplements to help me from reading about them on forums like this. I use a BiPap each day and a Cough Assist machine occasionally. I also use a respiratory muscle builder inhaler which has built up my lung capacity 13 % since October.
I go to the WFU/ALS clinic every three months and am scheduled for another one in July. Hopefully my lung capacity will still be building. I am still able to walk inside the house with the aid of a walker. Other times I use a power chair which is a great help.
Everybody please keep posting and helping each other and maybe we'll be able to beat this dreaded disease.
Gordon Brown
Bassett VA USA

 

[CindyM]

Hi Gordon- welcome to the forum. Glad you decided to join us. I like the description of your therapy room. Sounds great. After you have been with us awhile and have full privileges you'll have to post some photos!

BTW, what do you use for a respiratory muscle builder inhaler ? Is it something that the ALS clinic prescribed? Cindy

 

[fiddleplayer51]

Gordon,
Thanks for joining the forum. I'm glad you found us.
It's great your ALS is progressing so slowly and you've had time to adapt your living area to your needs. I really appreciate your listing some of the equipment you use and other practices you have found useful.
All the best to you and your wife,
Jane

 

[gbrown]

Cindy:
The one I use is the "Ultra Breathe Respiratory Trainer". I found it on the website "www.fulloflife.com. Item # is 70363. Price is $39.98.
I asked the respiratory therapist at WFU/ALS clinic about it before I bought it. She said that in years past they had not recommended it but as of late had found that it was helpful for building lung capacity. I think we have proven that it works. She tells me that PALS are expected to lose 3% of their lung capacity per month as the disease progresses. Mine has increased 13% from October until April. After my next visit in July I will let you know where I am.
Make no mistake, I'm not trying to sell any product, but you asked.
Cya,
Gordon

P.S.
I have pictures of all my exercises and help items. I will post when I get the privilige.

 

[CindyM]

You are right, Gordon. I asked. Members are allowed to make recommendations about products they have found useful. Advertising is when the person posting the information stands to gain financially. Thanks for the information.

PS: How are you able to build strenght? I always read that when a muscle starts getting weak it cannor recover.

 

[gbrown]

Building Strength

Cindy:
I don't really understand it about the building lung capacity. The respiratory therapist said it was very unusual to be able to do it also. My theory is that my lung capacity was so low from smoking for 47 years that it may be building up to where it should have been.
As far as building muscle using my physical excercises, I don't really think I'm building muscle, just maintaining what little I've got left. I don't think my physical condition has gotten any worse since I started going to the ALS clinic last July. I attribute that in part to the excercises I do everyday. The only progression I see is in my speech. I am still able to talk but my speech is nasal and slurred. It is hard to make myself understood sometimes. I am supposed to be getting a computerized speech machine soon. That way I can practice using it before my peech goes completely.
Cya
Gordon

 

[CindyM]

I tried to take up walking again back at the first of the year, but found I was too short of breath to cope. Plus I got so light-headed and nauseous that I was miserable all the next day. Any activity sends me over the edge, so I have learned to do a little and then take a rest. Maybe things will get better when I get my Bi-pap.

 

[gbrown]

Options to Walking

Cindy:
I can't walk much either, so I use a motorized bicycle to work my legs and arms. It has three different speeds and forward and reverse. I can also set the amount of time for it to run up to fifteen minutes. I use it for an hour each day for my legs and an hour for my arms. It doesn't make you strain to use it. It just keeps your limbs moving to help maintain muscle tone. My MD had a physical therapist come for some home visits last fall to see if he could help with excercises that would help me and he thought it was a great idea. He was even going to suggest to some of his other patients that they should get one. The good part is I sit in my recliner and run it up and pedal away. When I work my arms, my wife sets a small table in front of me and I put on my BiPap and got to town. The respiratory therapist said it was great to be doing some form of exercise while using the BiPap.
I wore my first one completely out and am well on my way to wearing my second one out. The one I am using now is a "FreedomCycle". You can find them in most health stores or order them online from one of the health catalogs such as Dr. Leonards.
Good Luck
Gordon

 

[CindyM]

What you are saying makes sense. I like your unique perspective, Gordon! It is like "thinking outside the box."

 

[gbrown]

I don't know about thinking out of the box but I like to think postive and try to come up with ways to help myself or someone else who has ALS. I have always been an optimist and try to think the best of all situations and people until proven otherwise. My wife is a pessimist and always thinks the worst first. I guess that's what makes us so good together. We always look at both sides of he problem and usually come to a compromise.
Gordon