Old 04-01-2017, 05:39 PM #1 (permalink)
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Unhappy New to site

Received mnd/als dx in dec/2015. Began in spring 2015 during tennis and bike ridingwith left foot drop and gait and balance problems and fatigue. After seeing multiple docs, went to neurologist, had EMG kand was told I had mnd. At that point was using cross country sticks to help with balance.

I am 72 and had been very active. Began taking L-serine in feb 2016 and worked up to 30mgs. In April, I fell and broke four bones in left dropfoot. Wore a boot and was non weight bearing til sept 2016. I was directed to get rid of crutches and needed a walker to ambulate.

Fast forward to now (march 2017), I still use a walker, but use wheelchair for outside and shopping trips. No longer drive or do laundry or cook due to muscle loss and weakness in both hands. Take modified Deanna protocol and the l-serine. Balance is gone and many days I feel like a weeble who wobbles and might fall down! Also have a wheelchair ramp and a used stair glide to get to 2nd floor.

I attend Bone Builders (weight bearing exercises) in the wheelchair once a week, have pool physical therapy once a week, and am trying to learn wheelchair tennis once a week.

Feel pretty isolated as I know no one else with this disease. Signed "artist"
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Old 04-01-2017, 09:10 PM #2 (permalink)
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Default Re: New to site

Hi Artist,

I'm glad you found this site. It's very helpful and friendly. I had been very active as well. I played all kinds of sports, scuba, ran, and always walked 5 miles a day. Now I carefully walk to the pool or my car. I had a bad sprain back in September in my "good ankle." It never really healed although it got back a good range of motion but still hurts. Prior to that my gait was very good and I could still walk a mile a day.

For those of us were were very toned and active, I think trying to continue doing something like pool is very important. I'm glad you are still involved in these types of activities.
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Old 04-01-2017, 11:28 PM #3 (permalink)
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Default Re: New to site

Welcome Artist. I think you be glad you came on this forum as there are a lot of knowledgeable and supportive members. I am my husband's CALS and felt very alone and isolated in this journey until I found this forum. Kate
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Old 04-02-2017, 12:13 AM #4 (permalink)
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Default Re: New to site

Welcome, Artist. Staying as active as your body permits, without exercising to exhaustion, is one of the best things you can do for your quality of life. As for meeting P/CALS nearby, you might see if your local MDA or ALSA chapter has a support group.

Best,
Laurie
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Old 04-02-2017, 09:30 AM #5 (permalink)
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Default Re: New to site

Hello there Artist, this is certainly the site to be at if you want friendship,a few laughs, and an abundance on information. There is very knowledgeable folks here and I don't mean just pertaining to ALS. Folks here can discuss a wide range of topics. My situation is somewhat like yours, using a walker and a wheelchair for outside trips, anyway this is the hand we were dealt so I guess we will play it to the end of the game
Al
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Old 04-02-2017, 10:53 AM #6 (permalink)
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Default Re: New to site

Welcome artist, best to keep active and positive. What type of art do you do?
I was a performing artist for yrs, trained in theatre, circus, street performance .
Post often and you'll meet some really nice folks
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Old 04-03-2017, 11:20 PM #7 (permalink)
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Default Re: New to site

Welcome Artist. I would contact your local als association and see if you can connect with others. The meetings can be helpful. I was diagnosed last October and was a pretty active hiker and biker. I fell in August and broke a rib. Cycling hurt so I transitioned to swimming. ALS has knocked me back several notches but I do pt once a week and aquatherapy in a heated pool 3x a week. I am pain free and have excellent range of motion and I believe that is do to the pt and pool work. I focus alot on my hips and ankles. I think the activity also keeps your mind sane and I like to meet people at the pool. The kids are wonderful.
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Old 04-04-2017, 12:51 PM #8 (permalink)
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Default Re: New to site

Welcome--ditto on the comments above on the helpfulness of this site and the people who make it work. I'm just a little younger than you at 70 and was a masters swimmer and very active taking care of our old house and acreage. I echo the advice about staying active within reason--I still swim, fewer yds and slower, and do stretches and work with bands as prescribed by a PT. I understand your feeling of isolation--I go to a support group (ALSA sponsored), but most of those attending are caregivers or people who've lost someone to ALS, but it may be different in your neck of the woods. Wishing you the best,

Ed
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