dennis-turner
Forum Replies Created
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Jennifer, I am 59 year old who was diagnosed with Kugelberg-Weilander disease when I was 15. Didn’t have the internet and didn’t really know it was a MD until I was in my thirties.
I walked until about two years ago, but progression/lost has been very rapid since that time.
This is a good group of people and a good community to be part of.
Dennis
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Did your sermon get recorded?
I co-pastor a small house church and sometimes need to preach, but never feel good about it. My wife does most of the teaching and preaching.
Good on you for getting up and going for it.
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I drove without any modifications for many years, but when I could no longer feel that I could reliably stop when I need to, well that was that.
I haven’t driven for two years now.
Modifying a vehicle to enable my motorized wheelchair to get me in and then making it hand operable is far beyond my budget.
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Blue tooth mice are easily obtainable and wwill work with iPhone, iPad, or any tablet. You would still need to find out what works for you.
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This topic is just ripping me apart. We all want the best for our children, but deciding which treatment/therapy is the best is difficult.
I am a 59 year old man with SMA3 and was able to walk/drive until a year ago.
When I was diagnosed, there were no therapies and little hope for a normal life (whatever that is). Yoday I have a wife, three sons, and a beautiful granddaughter all of who are healthy and SMA free.
Kyrie, I pray for you and your family as you try to decide what to do for your daughter. Any decision you make will be the “right” one for her. Prayers also for your next child. You and your husband are both doing everything you can to help make their lives better.
You are good parents.
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Thank you for the heads up! I have requested this package, it looks great.
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PT not pet
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Many different times. Basically my body failed when I pushed too far or tried to do what I was able a few weeks earlier. No treatment for most things because if I was put into a splint or walking cast, I was immobile and I wasn’t willing to do that until I had no other choice.
Funny story with lofstrands, a young new pet decided these would be great for me. As I tried them for the first time, I went down and she ended up falling on top of me. No one was hurt, and we decided not to try again.
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Broke all four bones on the top of my foot, two bones on the back of my left hand, shattered my ankle (twice,some one), broke two ribs, and cracked my head open. Only let them treat the ankle and the head. Stitches for the head, plates and screws for the ankle. The six weeks of recovery for the ankle helped me lose mobility and pretty much forced me into a chair.
Bone density showed that I had issues, but they simply started me on calcium supplements, which made me nauseous. Fun times.
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“Fully accessible” according to transit authority. Reality is that it is an older system in need of much upgrading.
Currently only the busses are fully accessible. Trains and subways are mostly accessible if you live in the city. Outside of the city stations are far less accessible.
For a number of years I took public transit to work in the city. I needed to climb or descend 32 steps and then climb aboard the train. A fourteen inch step.
If you live further away you may need able to qualify for public wheelchair car pickup, but it needs to be arranged several days in advance and is very unreliable.
A couple months ago I was gifted a van for my own use. It has made life so much better.
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Living in the greater Boston area I can say to that most of the “historic” areas are totally inaccessible. If you visit Gloucester for example most stores have a single step to even enter, and they can’t add a ramp or anything because of the historic importance.
Most homes in this part of the world also have steps to enter. This means I can’t expect to just be able to visit friends without knowing in advance that I can get into their homes.
Still, I have it much better than some others.
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I used to live on coke. Then switched to coffee. Therefore I can honestly say caffeine helps with life.
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Update from my Neurologist. Apparently there are no adult trials going on in the Boston area. He is currently working to start the process.
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I meet with my Neurologist Tuesday. Thank you all for your encouragement.
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I am also following this topic.
I was diagnosed with SMA3 in 1975 and was able to walk much of the time until about 5 years ago. I am now 59 years old.
My Dr. is talking with me regarding spinraza.
Maybe/hopefully I will get treatments once approved by both him and my insurance.