Suggestions please

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scj1250

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My brother was recently diagnosed with ALS. At present he spends his days sitting at home by himself. I'm hoping someone has some ideas for activities he may able to do especially outdoors. Thanks much!
 

Ray Turner

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My brother was recently diagnosed with ALS. At present he spends his days sitting at home by himself. I'm hoping someone has some ideas for activities he may able to do especially outdoors. Thanks much!

I was diagnosed last month. It was devastating for the first couple ofweeks. However one of the things I decieded to do was continue to play golf, do the grocery shopping and any activity I could around the house. My arms are getting weaker and I cannot lift any wweight. But I can still do some chores. Keeping up with a noremal routine helpps stop the mind fromthinking about this horrible disease. P. S. I also am taking some anti depressants that work will. Ray
 

brooksea

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You say he was just diagnosed - how old is he and what are his symptoms? Can he get around OK without assistance? Can he talk OK? Is he single or does he have a fmaily? Give us a few specifics and we can give you some ideas!

I'm very sorry your brother has ALS. He is most likely in shock right now and it will take some time to get over it. Have y'all gotten in touch with your local ALS chapter? They can come visit with him and if you were there at the same time that would be great. They can give you information and have equipment he may need now or in the future.

One more thing - was he diagnosed at an ALS Clinic or by a local neurologist?

You are doing a wonderful thing by trying to help your brother.
 

terri

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suggestions

I'm thinking that since your brother is home alone and can get outside safely that maybe he can do lots of things. What would he think of good sporty remote control car to play with? Most men are still boys when it comes to toys with wheels! Even if he is in a power chair he might could entertain himself with that. Other possibilites might be container grown plants. Herbs and many vegetables can be grown in containers and place where they would be accessible to him. Just some thoughts. Let us know what he can do and what he likes and maybe we can help you think of more ideas.

Take care.
 

Shasta

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When he gets ready to go out....I know that most race car tracks usually have places where people that are wheelchair bound can sit and usually they are one of the best seats in the house. I know at most small tracks you can even talk to one of the managers or even owners and they could make a special announcement to him for making it to the races. Remember the greatest day Lou Gehrig's life? Him standing in front of thousands of his adoring fans. The very people that saw and acknowledged his strengths.

Let us know what his likes are and his capabilites are now. I'm sure everyone will have a special idea. There are so many kind people here that you'll probably be given more ideas than you know what to do with.

God Bless
Doug
 

scj1250

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Thank you all so much for your care and concern. My brother is 58 and was diagnosed in July, 2007. He is married, but no children and his wife works full time. His left side is most affected and his speech is somewhat impaired, but more so when he's tired. He has mentioned that the only pleasure he gets is driving which he manages quite well. He said that he wishes he could be useful in some way and would enjoy being outdoors. I'll give him the information you've already provided and again many thanks and blessings to you all.
 

John1

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SCJ,

If he enjoys animals I would suggest he get a small dog. While he can still walk, the dog will get him outside every day and, as a bonus, he will be needed. I just returned from a 4 mile scooter ride down to the ocean and back. I live in a rural area so there is little traffic. One of the great pleasures of my day is taking my dog for a run with my scooter. The fall colours here are at their glorious peak and the autumn smells are are wonderful too. And it's my dog that gets me out there. If your brother enjoys gardening, I would suggest he build himself some raised beds that he can use now comfortably while he can still walk and then later he can garden from a wheelchair or scooter. Again it will keep him involved with the outside world.
 

hboyajian

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Hi, I think the little dog idea is great (if he likes dogs of course). Dogs are so devoted and appreciative of someone not too busy with work to take them out for walks. if he can still throw a ball with one arm, fetch can be fun too. If they really can't take on a pet of their own, maybe there are neighbors who would be really appreciative of some attention for their dog during the day. My dad loved gardening, and we put some container plants on the patio table where he could reach them. A motorized wheelchair, if he does not have one already, can be freeing when his mobility is significantly compromised. He could go outside to do small errands like getting the mail, or depending on where they live, do a little shopping even if just to get out and interact with people. One more thought, just for variety of activities, if he has a physical therapist who has a therapy pool, this could be something to do for a change of pace and to help keep range of motion. Our local MDA had a really nice, warm pool for physical therapy.
 

esrich

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My husband has a couple of odd hobbies, just for a different suggestion. He likes to raise bees and chickens. We live in the country and he is still pretty mobile, although he does tend to fall a lot. Sometimes he has to have help with the bees as he has lost most of the use of his right arm. Most people aren't really into those sorts of things but he enjoys it and gotten me interested. Or what about a fish pond? We had koi at our last place and plan to build a bigger pond at our new place. They are fun to watch and it's very soothing. My husband used to sit and watch his for hours.
 

CindyM

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I have been teaching myself meditation. It helps with the stress, worry and fear, requires nothing by way of equipment, and when I do it outdoors it is especially enjoyable. Cindy
 

MtPockets

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I use to raise chickens and loved to work with them everyday. I bought them online as biddies and raised them myself. I guess they thought I was their mommy. When I would go out side they would all get excited and follow me around all over the property. At the time I had an old farm on about 8 acres. It was so funny to see me leading those chickens all over the place. I raised chickens for about 5 years until I got to where I was falling too often and had to go to a wheel chair.

That was where one of my funniest stories came from. My wife had gone to town and I decided to go"feed and play" with the chickens. I also had a cocker spaniel. She was really good about not letting the chickens get too far away from the pen where they spent the night to protect them from foxes and dogs.

Anyway, as I was going down a hill in my manual wheelchair it hit a tree root and flipped me over backwards. I hit my head, but the only thing really hurt was my pride. No matter what I did I could not get up. So I just lay there and watched the dog herd the chickens around. Then I imagined I felt an ant bite on my backside, and I begain to think, AM I laying in an ant bed? It's amazing how the mind can play tricks on you sometimes. I finaly convinced myself that I was not in one and decided to enjoy the view of the clouds in the sky.

What a beautiful day to be laying on my back in the dirt looking up at the sky and enjoying the day, until, it begain to rain. As the raindrops covered my glasses, I begain to wonder, How long did my wife say she was going to be gone?

Well, after about two hours she drove up and immediately went into the house not seeing me. After some time she came outside, calling AL where are you? And of course you know what she said when she found me, "What in the world do you think you are doing?" Oh I just thought I needed a bath and decided to flip over backwards to wash the front. (Here's your sign)

That ws several years ago and now I have 2 dogs. One just came in and got in my lap and tried to help type this message. She is a small Chia-Pom. They are great company. Especially when my wife has to go to town. Also, I 've learned to ALWAYS carry a portable phone with me, even when she is home.

Welome to all the new members. I'm sorry for the reason you had to come here, but welcome you and invite you to share, ask questions, vent, whatever. Just make yourself right at home. And yes, my vote is to get a dog for a pet to keep you company.

God Bless
Capt AL
 

cheryilyn

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Al,
Your grandson is so cute and looks like he is doing well.:-D
 

JohnKelly

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My Suggestion

This thread raises what I think is a very important subject for those newly diagnosed and I would like to share something with those like your brother.

I have limb onset MND (my ALS diagnosis is not yet official because of the possibility of an autoimmune cause) that started in my legs over 4 years ago. At the time of my diagnosis of lower motor neuron disease 3 years ago, I was 45 with a wife and two children, a new home and a new business. I was absolutely devastated emotionally and didn't want to do anything. But after a couple months I dedicated myself to my work and my family. For the next 3 years I went to my office virtually every day that I wasn't seeing a doctor. Driving my son to H.S. every day on the way in gave me a purpose and a duty, as did providing for my family. I progressed from leg weakness to a cane, then to a walker, then hand controls on my car, then to a Quickie wheelchair. I now don't have the strength to drive with the hand controls and I am stuck at home awaiting delivery of my motorized wheelchair, which I hope will allow me to get back in the office a few days a week.

I am fortunate to work in a professional field that allows me to work despite these physical limitations, and I also do not have any significant bulbar involvement yet. So I understand that my experience cannot apply to all of us. But my point is that I have been able to keep my sanity and to some extent spare my family from the emotional trauma of this disease by keeping myself productive and occupied. We must all find a purpose to keep us going. Although it sounds a bit old-fashioned (I guess I did learn something from my father), what works best for me is to acknowledge that I have a DUTY to certain people and to myself. No matter how difficult things get, we possess this duty until the end, when we will have the duty to die well and with dignity.

No one can be given this DX and not be devasted emotionally. In my opinion the only way to keep going is to have a purpose and PALS family members can help by showing the PALS how much they are needed and by helping them find a productive endeavor. The human spirit has unlimited power to overcome hardship for love and when duty requires it.

I read alot of military history and I find it useful to imagine a soldier in any war who is facing almost certain death in battle. What motivates him to keep fighting? His love for his family and his duty to his buddy next to him. It works in our situation as well.

John
 

MtPockets

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Thanks John for summing up what a lot of us feel, but do not know how to put into words.

Cheryl, thanks for your kind words. I have added a larger picture to my blog and an update on Lil Daniel's condition.

With that helmet maybe he can get a part in the next star wars picture.:-D

God Bless
Capt AL
 
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