New? Introduce Yourself - Say Hello

Leroy Houston said:

I am a new member. Glad to find forum site. Going to take some time and get aquainted . LEROY

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Hi LeroyWelcome. good to know you. EM:twisted:

Welcome...

Frizzel

Welcome njgal and Cape Cod. The best thing to do here is first try the search feature to try to find what you are looking for. If that doesn't work just ask away.
AL.

Welcome to all who have just discovered the forum. I'm sorry you have to come here, but we are all facing the same problems. Feel free to jump in with any questions.

Frizzle, about the wheelchair question;

I have used manual wheelchairs for the past 12 years at least and I like their mobility. They are easy to store in the trunk of a car or in a back seat. Almost all fold up for this storage and are relatively light compared to a motorized wheelchair.

I have been in a motorized chair for about 8 months now I guess, and had to buy a new vehicle just to carry the thing around. I had to buy a vehicle that had a class III trailer hitch to mount the lift mechanism on. My chair weights close to 300 LBS, and I use a rear lift rack on my car to carry it. The cost for a van that you can drive a wheelchair into was too much for me, $50,000 as I am over 6 feet tall and needed the raised roof type. Of course you can find them cheaper used, but there were none around my location when I needed one, thanks to hurricane Katrina. I am in Gulfport, Mississippi.

With the arm weakness you can use the cheaper and lighter manual wheelchair until your arm strength is gone, or have someone else do the pushing I guess.
I hope this helps.

God Bless
Capt AL

wheelchairs

Hi Captain!

Thanks for the info on the wheel chair. We rented one for a month. Lighter, fold up with a gel cushion just to see how it will work for me. A little sportier looking than the hospital looking ones. My husband says I go so fast compared to the trying to walk with my walker that he's going to have to start working out just to keep up with me. ha! I'm going to the Certified ALS clinic in at Providence Hospital in Portland the first week of April. They are going to evaluate me too. They got me in in a week. Wow! COuldn't believe it. I am soooooo grateful. Feel like I'm on the right track with how to take care of myself and the progression of the PLS. Spent most of the day running around in my chair. Felt like a free bird let out of her cage. For now, I am so grateful to the Lord for the opportunity to feel this way, even if just for a season. I want to keep my arm strength up as long as possible.

Take care of yourself Captain Al. Spring time is almost here. I learned how to cook southern years ago. Many wonderful memories. some of the best people around are from the southern states.

You are so right about the cost of the vans. Doggone, we could almost pay off our house for what they cost. One day at a time. Blessings and Joy! Have a great week and God be with you as you forge ahead on this 'Road Less Traveled'.

Frizzel

Hi, new here ALS about 6 months now.left foot started to swell today any advse TIA

Welcome to the site REMSENBURG. Usually the best thing for feet swelling is to elevate them if it just inactivity that is causing it. As the muscles atrophy they don't pump blood back to the heart as well. Have you ever had clotting problems.? That could be another scenario.
AL.

Hi, I'm Adele...new here...glad this site is here....my mum has ALS...I'm not coping well with it & neither is she. Moved across the country so I can be close to her. My stepfather quit his job to take care of her but their son, my half-brother is Autistic. Now my mum wants to go into a chronic care home so that she's not a burden to them. My stepfather & I don't get along, he has kept me from visiting her. Last time I saw her was late Jan. &she was on a feeding tube & needed help to walk. She can't communicate any more, so no more emails or phone calls. I'm constantly worried about her. Once she goes into the care hospital, I'll be able to see her but it hurts to see her in so much pain. I feel so helpless. I appreciate any support or advice. I'm seeing a shrink for coping skills but it's not helping me. Thanks for letting me vent. Adele

Hi Adele,

I hear your frustration with trying to be with your mum. It sounds like you really want to be with her. Maybe in some way, moving to a care hospital, if that's what she's asking for is her way of being with you. Just my opinion...I don't know the circumstances. She's still the same mum inside her body... What a gift you have given her to move close to be with her. That speaks volumes.

My suggestion is to get support for you. If one counselor doesn't work, try another or go find an ALS support group in your area. While, your mum still can, maybe she can go with you. You can make it a little fun by doing something special like going for a drive in a pretty area of town. If it's a nice day, bring in some outside air. FOr me in the car I have to keep my legs warm so I bring a blanket to cover them. Sometimes I place a hot water bottle at my lower back. Just make sure to screw the top on tight. Believe me, I know....ha

Thank you for sharing Adele.

Blessings and Joy~ Frizzel

Good Morning all,

Just rolled out on the back porch and enjoyed all the beautiful wonders of spring. The flowers are blooming, the trees are getting new green leaves, and my grass is no longer dead looking. It's amazing how beautiful God makes things look after such a drab winter. It makes me appreciate having another day to enjoy what I have before me.

Yes, I hurt so bad I could not get out of bed without my wife pulling me, yes the swelling in my legs hurts, and I could focus on so many other negative things that are trying to distract me from the beauty that surrounds me every moment. Life is a wonderful gift and I will enjoy every moment of it, one day, one hour, even one minute at a time.

As our fearless leader AL says, "Live today like tomorrow may never come". By the way thanks for that AL.

To those new to the forum, I know your scared, we all were when we first got our Dx. There are several steps we all go through in the process of having this disease, if you have been to counseling you have already heard them many times. But for the benefit of these who have not they are:

Denial
Bargaining
Anger
Depression / Anxiety / Grief
Acceptance

We each work our way through these at different speeds. We even sometimes back pedal and go through them again at some point. If you get to the end of it, then you have to decide on your attitude about what life you have left.

Your choice can be:
1. Be negative and be miserable until the end, and in the process make all those around you miserable or
2. Have a positive attitude and live one day at a time. Enjoying life each day like it may be your last.

How do you want to be remembered by those around you?

I know it's hard. I know it's painful. I also know God will give you the grace to make it to the end if you will ask Him. May God bless you with special peace this day and each day to come.

If you need any personal help in getting through this, send me a private message and I will be glad to talk with you. Just left click on my name MtPockets and chose personal message.

Here is a hug for the hurting.

God Bless
Capt AL

My friend has it....and I'm worried and don't know what to expect

Hi. I just found out a very good friend has this, and I'm so worried and don't know what to expect or how I can help. Any advice would be appreciated. I love this person very much.

Welcomed freespirit -

I think it's fantastic that you're taking this much initiative to find out how to help your friend. One thing that may help, although it is time-consuming, is to start browsing through all the old threads here. You may want to pay particular attention to the caregivers' contributions. And feel free to post any questions that you have. No matter what the issue, somebody here has "been there done that" and can share their experience. Nice to meet you.

Liz

The most important thing is dont give her pity We dont need that we need encouagement Wait till she is really to talk Dont bring it up until she is ready. Thats how I felt and my friends always waited for me to talk about things Follow her lead she will tell you if she needs help Take her out shopping lunch shows theater thats what makes me feel normal . and laugh laugh laugh alot. And be there for her good luck pat

Glad you found us FreeSpirit. You came to the right place for help. The advice the others have given is right on. The search button above the message section will help direct you to any subjects or question you may have and you can see how others have faced the situation you are in with your friend.

Laughter and a positive outlook on each and every day we have left here does wonders to help us get through this horrible disease. We have a thread here called cheer people up which is nothing but jokes and funny things to keep our minds off this disease. Something like that maybe in emails to her when you can't be there in person would help.

God bless you as you help your friend through this time in their lives. They are blessed to have someone like you in their lives that cares.

God Bless
Capt AL

Hi everybody...

Hi,
I'm a new member, and this is the first forum of its kind that I've joined...so please bear with me...
My mother is suffering from ALS, diagnosed in 2003...her condition has deteriorated...now I feel the need of belonging to some kind of group which will help me in finding and giving help & support...