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danrising

Active member
Joined
Mar 26, 2014
Messages
64
Reason
PALS
Diagnosis
07/2013
Country
US
State
SC
City
Gaffney
Today is my one year anniversary. I'm not sure if it is a time to celebrate? A lot has happen in the past year. I am in a wheelchair about 75% of the time. Can only walk short distances, have very little upper body strength, can hardly carry a cup of coffee. Can not dress or bath myself with the help of my wife. I never knew how many muscles it took to pull up your pants. Thank goodness my breathing is ok and no signs of bulbar at this point. My weight is still good. Starting to lose control of my hands and arms more and more each week. I'm a veteran and thank goodness for all that I have been provided by the VA. I have been turned down for A/A even though my wife has to quit her job to help care for me? I'm starting back to exercise daily to help with my swelling feet and numbness due to poor circulation. Will start slow on stationary bike and light weights every other day. I continue to fight everyday and work hard to keep a positive attitude for my wife and my 11 year old son. I pray for all of the PALS/CALS on this site and hope research comes up with a treatment/cure for this awful disease in the near future.
 
I know this year has brought a lot of changes in your life. I'm glad you are staying positive and are able to enjoy time with your family.
 
Well, you're alive! That's a good thing. lol
I think we will see some improvement with treatments soon, so hang in there, and enjoy what you have now.
Stay positive!
Casey
 
Hi Danrising!

Hang in there guy. . . you're not alone! I was diagnosed this past spring but have had symptoms since the beginning of '12 so we have similar histories although our symptoms differ somewhat - everyone's do, for that matter. Keep up your faith. . . this is the time to actually have it. . . not when things are good and easy. That is great for you to make a commitment to stay a bit active. . . . and bless your wife for her dedication! I've actually been engaged since Jan. to a VERY supportive lady. We are trying to sell her home before the marriage so I'm still living on my own. I'll be keeping you on my daily prayer list - it works.
 
Congrats Danrising, I had mine in June, funny how you think when first diagnosed that it is the end, we still have some time left, I have a birthday this month, last year I was sure it was my last.

Janie
 
Hang in there Dan! This is but one year of many to come.

Regarding the exercise, if you have access to a gym I would recommend exercise in the water. It's wonderful, I can still walk unaided in the pool.
The VA can set you up with a PT consult that could provide a set of water exercises. I go twice weekly and spend ~45 minutes.
 
Hi Dan,
That is a good idea that Greg had to try to do the exercises in water. But, don't ever get into the pool alone. That is rather on not one has ALS or not. No one ever should be in a pool by themselves. Otherwise, it seems that you have a great attitude and even though you've had some progression you are still doing pretty well for having ALS. I don't want to push religion on people on here that don't want it. But, I would recommend that if you do have faith to rely strongly on God to help you through the rough times. You will continue to be in my prayers. My son will be 11 in November. He still tells me that he loves me several times a day. I hope it doesn't stop anytime soon. Hang in there Dan. Kim
 
Great anniversary Dan!

I would ask you to get a PT that knows ALS to work with you on an exercise regime. You don't want to start speeding up progression by doing this wrong now.

There are all kinds of modified equipment like the stationary bike for example that will allow you to keep those legs moving but that may be easier to use and give more benefit.
 
Thanks all! I will take it easy on the exercise so not to over do it. Not doing is probably the hardest thing for me. As far as swimming, I have a pool but have already closed it for the season. I will have to look into the VA providing a PT for workouts.

Thanks
 
Do check out your local YMCA and also community recreation services for pool times. Indoor pools are so easy on your body, and usually a lifeguard is there for your safety.
 
> I never knew how many muscles it took to pull up your pants.

ain't it the truth! congrats on 1st anniv., hoping for many more!
 
Congrats Dan, as I am just over my one year as well. I use the local YMCA pool to work out, and go to their free group workout. If you have Medicare, you actually can get a free membership via their Silver Sneakers program. So it would be no cost to you. Also, all of their programs are free as well.
It has definitely been challenging to find new ways to do everything, especially getting dressed each day. Plus, I fully understand what you mean when you do not like it when you do not get to work out each day. As getting to the pool is pretty much the only thing I have left to look forward to each day anymore. Cheers Dan, I will pray for many more great days for your family and you.

Stephen
 
Thanks everyone, I live in a small town and our YMCA don't really have a pool. They share a pool with a local College and our high school with no life guards so that option is not available to me. I will limit my exercise to not over do it.
 
Regarding your question on aid and attendance: Here's from the VA site.
Aid & Attendance (A&A)
The Aid & Attendance (A&A) increased monthly pension amount may be added to your monthly pension amount if you meet one of the following conditions:
a) You require the aid of another person in order to perform personal functions required in everyday living, such as bathing, feeding, dressing, attending to the wants of nature, adjusting prosthetic devices, or protecting yourself from the hazards of your daily environment
b) You are bedridden, in that your disability or disabilities requires that you remain in bed apart from any prescribed course of convalescence or treatment
c) You are a patient in a nursing home due to mental or physical incapacity
d) Your eyesight is limited to a corrected 5/200 visual acuity or less in both eyes; or concentric contraction of the visual field to 5 degrees or less
 
all we can do is get up to a new day and hope for all mine more. i was thinking exercising was good, boy did i get that wrong. all i was doing was using up what muscles i did have lift.
 
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