Lower limb onset

[Micheline]

I have been trying to find posts in PALS with this discription, any posts really. What I am looking for is "how". How mobile, how active, how to deal with washrooms, I have many more. But I guess what I am trying to get at is, I am finding it very difficult to even get dressed some days. I guess it is the feeling of "it's a chore". I have been struggling with this, "too emotional" to say the least! Some days I just want to hide and never come out. Other days, I feel trapped in my own house, dependant on others to get out.

Maybe I'm looking for is how you have dealt with it? How do you get motivated to get up and go, but you can't move your legs? I see people in our community in wheelchairs, and I think "how", they look happy, I think I am more frusrtated than anything. I don't know!

Micheline

 

[CindyM]

Hi Micheline. Not bieng a PAL, I can only say what I have observed. I think it takes time to adjust, emotionally. I bet the others will say they had to get their minds around this, then maybe they screamed and cried and threw a few things.

You may also need to pace yourself? I ask because this is just a hunch. But if things take longer no wonder you are frustrated! cordially, Cindy

 

[tag0620]

Hi Micheline

My name is Tracy and my husband was just diagnosed with lower limb onset als on Tues. We have not had a second opinion yet and are waiting to get into the Mayo Clinic in AZ to get tests that have totally been left out of diagnosis...trying to not be in denial, but still hanging onto hope I guess.

Jim is still mobile in that he can get into and out of bed, struggles to walk with a bad gait, pulls himself up the stairs with his arms....I worry most about our house...classic mountain home on 4 levels with 3 sets of stairs...you can't even get INTO the house without climbing stairs.

Our biggest thing right now is working on maintaining whatever mobility we can. He's in the gym 3 days a week with a trainer to bring weights over to him, he's doing pool therapy once a week to keep the movement going (he ADORES this...says it makes him feel more normal), and pilates therapy once a week to keep stretching and try to control stiffness.

He's still able to drive so he hasn't become too dependant on me yet. I've been trying to read for suggestions on dressing and making simple chores easier...If I find anything...I'll be sure to share...

We wake up sad, go to bed sad...but have decided we're going to do all we can afford in the meantime...we're getting him in a disabled sit ski this winter, he wants to enter the wheelchair division of a 1/2 marathon that he used to run every spring, we're taking a couple trips and just planning to fill our time with as much joy and things we love as we possibly can.

Also..if you can try not to feel "dependant" on others as much as realizing you're allowing people to heal their own pain by helping, or that your helping them in THEIR ministry by being able to help...that may help you. BE STRONG (as much as you can because I know we'll have our moments too!)

You're definitely not alone.

Tracy

 

[sharonca]

I found that the way to get motivated to do more than feel sorry for myself is to find a way to help others. I did that first working with Stu Millheiser at ALS Guardian Angel Foundation and now working with ALS Matters web site. The idea is to find a way to have a reason to live. A motivation. I am very happy and satisfied with my life most days. I have a spiritual life that gives me hope for the future whatever that is. I'm not crazy about the process but not afraid of the end result. For me, after diagnosed life got better. Waiting for the diagnosed was just awful. There is a lot to do for ALS awareness and finding ways to help others. Both web sites I mentioned need help I'm sure.

Sharonca

 

[Micheline]

There is one other person in the town we live in tht also has ALS. Home care is passing on my email and phone #. He has had lower limb onset, but has progressed. I am hoping to get in touch with him and his wife.

I have had lots of support come in, social worker, OT, nurses. And has been advised there is hospice. That i helping me to at least get out of bed most days I am still working on the transferring, got the brusies to prove it...The nurses think that my "quaility of life" would be better if I have a cathiter(sp). I have such bad urgency that I do not go out as often as I should be. They feel it would take alot of stress out of my life. They did get the approval from my GP. They are going to talk to my urologist, as I have an appiontment on the 17th. So we will see.

I have been talking my meds, no "big" side effects.

Have a great day!
Micheline

 

[joelc]

Micheline, it seems to be hard for a lot of PALS to dig themselves out of depression and cope with the changes taking place. Things can change really quickly and that can cause a lot of anxiety.

I just take 1 day at a time and enjoy it to the fullest. I get out, go down town, get involved where I can and choose to be happy and not fret over things I have no control over. This may sound simplistic but it works. I don't worry about tomorrow or what I can no longer do, I give thanks for the things I can still do.

We need help doing just about everything now, I can't feed myself, dress myself, get out of bed, go to the washroom, etc. But we have embraced the changes and asked for help. Life is an attitude and Life is GREAT!
The ALS Clinic in Vancouver has been great! I hope you are in touch with them.

 

[brendapals]

Micheline,
I have to throw my little "recipe" in to you too. Yes, it is an emotional roller coaster for a while, time frame different for everyone, but it is also very dependent on how each person looks at it.

For me, the last 6 months have been an absolutely wonderful adventure! My hubby and I, and our 3 boys, have laughed more, cried more, traveled more, watched movies more, stayed in our pjs until noon more, even spent a week at the beach!

I also still drive, work 4 days a week because I'm one of those stubborn nurses, go to the boys' sporting events, however, I have learned that I feel much better when I pace myself.

The opportunity to educate so many people about ALS has been a blessing to me. I got very involved with the ALS walk that was in Sept. So please, please, don't think anyone has "a perfect fit" with ALS, I guess we just all make the adjustments we need, and then go live life to the fullest.
take good care,
talk soon,
brenda

 

[gifogif]

Lower Limb Onset

I started out with weakness in my right leg in 2003. I was still walking ,well I call it walking,when the second opion was given in 2005. Now I have been in a wheelchair for about 1 year. However I still work 4-6 hours a day and spend the rest of the time with my wife of 40 years. It did take some time to wrap my head around this challenge, but once I accepted the challenge my attitude also changed. I look forward to get out amongst my neighbors and enjoy their company. I also now enjoy just looking at a clear blue sky and other simple things. I guess I am now appreciating all the little things that I should have appreciated my whole life. I believe it's all about attitude. Once you come to terms you will understand that every day is a gift to be treasured and enjoyed. God Bless you and my prayers are with you and all other PALS