pattyb

Since I last talked to you I can no longer use the walker at all. My speech is very slow but understandable. But my breathing and swallowing are pretty good. I'm in Texas with my large family until the 25th of May so I'm being spoiled rotten! We're having a great time. Acceptance sure makes this a lot safer and easier. I'm sorry your brother is struggling. I had to fall numerous times before I gave up walking. It was hard for me to give up my independence. I imagine its hard for your brother too. Be patient with him. This leaves you with no dignity. I highly recommend the Easy Pivot Lift for easy one caregiver transfers. You can borrow one from your area ALS Association. Any lift leaves no dignity but an Easy Pivot Lift is easy for one caregiver and takes up less room. I hope your brother settles in to being taken care of. Let me know if I can help. Take care Patty!

Is anyone having problems with dizziness. My brother has been I guess you could call it light headed. When he sits up in bed, stands up he just feels like he's going to fall over. They said this is not part of the disease but its something he's had for awhile. He went to an ear dr thinking that was it but they said everything is fine. It's sort of like vertigo I think but it's not

Well we go to the clinic next wed so I guess we will know if any new studies are out there. My brother is slowly giving up and just sitting watching tv and its too bad cause he still can walk a little, talk and eat. He just doesn't care anymore as this is not what he had in mind when he retired. He was always the one who helped and now he has to be helped and doesn't want it. His wife still will not go to support groups, dr appts or talk to anyone. He needs a wheelchair soon but she says they don't have the room for a wheelchair. I have my own family but I love my oldest brother so will continue to go to support groups with him, take time off from my job to go to dr appts 2 hrs away and take him for rides. I'm not looking forward to what lies ahead but I will be there for him. This just plain sucks

Things are still the same around here. He's as stubborn as ever. He finally sold his truck which was a big deal As he hasn't been able to drive for almost 2 yrs now.he still dresses himself even though it takes him over an hour to do it. He still uses a walker in the house but we put him in a wheelchair for outside. It really is time for a wheelchair but he's not ready to give up one more thing. I'm so glad to hear your doing pretty good.

Hi Patty! I'm in my PWC full time now. I can stand to transfer so far with help from a walker. I need lots of help. It marches on. I'm still breathing, speaking and swallowing without too much difficulty. I have a pulmo appointment in the next couple weeks so we'll see. I'm in good spirits! How is your brother doing? Well I hope! And how are you holding up?

Well we missed the support group. My brother said he wasn't feeling well so we skipped it. We were going to go see the new hospice building that was built. I'm thinking maybe he wasnt ready to see something like that. We all keep moving on, staying positive and hoping for a cure.

Well it's been over a year since I've been on here. Been a real busy year I should say. My brother is now going in his 4th year. He's doing so much better than we expected at this point. I'm not saying he's doing great but he still uses a walker in his house but uses a wheelchair when he leaves the house. His hands are starting to be a little difficult for him but he refuses to be helped and still does everything he can do. He still goes up the stairs with the help of hand rails on both sides and dresses himself although it takes a long time to do this.. I just wish he would get out more. He hardly ever leaves the house except dr appt. I'm hoping when the weather get better he will go outside a little more.

You and yours okay Patty? We've been seeing lots of scary stuff on TV. Let me know how you're doing Dear!
Hugs,
Marta

Well things seem to be getting worse gradually. Ive tried talking my sister-in-law to go to the drs with me and my brother but she just says she cant handle it. Im just not sure what to do. He really needs to know he has her support but she gets upset everytime I try to talk to her about it. He still walks with a cane but has to be held onto most of the time when hes walking. He just says hes not ready for the walker but hes going to fall if he doesnt start soon.The research drug is making him worse so not sure what they are going to do about that. Im so glad your doing well. Its nice to hear some good news.

Hi Stranger! I'm sorry your brother isn't feeling well. I'm doing very well actually. I feel good. I do sense more weakness in my hands and legs but it's not bad. Life is good! I'm considering stopping work at the end of the year. As that time gets closer I'll know more. It's nice to hear from you Toots! How have you been other than very busy?

Well brother started his experimental drug and is not doing so good. He seems to be having alot of side effects that are getting worse everyday. I guess its time to think about stopping it. I wanted to be so hopeful about this but I knew the odds were against us.

Yes it would be wonderful! Keep us posted with that. Yes, it's hard to stay positive and upbeat all the time.

If you click on the "conversation" I think it is, your responses will show up on my page and I'll respond more quickly. I didn't see your note until just now. I guess I don't check on you enough or something. My bad. And if you want to start a new discussion, click on "New Posts" up above, then click on the group you want your message to show in like "People with ALS - PALS" or "Do I have ALS" or "Other" or whatever else there is. You find those links to the right of each post. Let me know if you need help with anything.
Hugs,
Marta

Well i havent been on much. Been busy helping my brother get is pool opened and flowers planted. Been to the drs a few times and as it is getting harder to walk and use his hands I see his jolly happy self fading away. We went to te research center and he has started a new experimental drug. Lets hope he can handle it and its a breakthrough. Wouldnt that be wonderful. Well ope everyone is doing as well as can be expected. Its great to be able to come here and talk about my feelings. Thanks everyone for your support

I used to work in a Children's Emergency Shelter in Dallas for 10 years or so. I understand what you're saying when you say that it's different when it's your own. The thing is, even after a diagnosis, we don't know how it's going to go for sure. Yes, most likely we won't last long. Most likely it will get difficult. But while we're still able to get around and are doing well, lets be happy. As carefree as we possibly can. Enjoying each other while things are pretty good. And then take things as they come rather than wasting time worrying about something that hasn't happened yet. Know what I mean? Make the best of life while it's good and then make the best of whatever comes down the pipe. That's my only goal now. I hope you can help your brother and his wife have a good time of it. It's life. You're a good sister. Keep up the good work. xoxoxoxo!

I think what scared him was knowing that would be him one day. Ive worked with handicap people for 20 yrs now so i guess thats why i know i need the support. Ive never worked with pals but just about everything else. Ive seen the decline and dealt with many deaths but its so different when its your own family. Well on my way to go plant some flowers at his house. I guess his wife doesnt do that either. He always did and now that he cant i guess i will. Anything to make him happy. Have a nice day