Waiting/dreading Dr. DX.... What can I do as a caregiver?

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Hope1935

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We met with the ASL doctor today and after he looked over all of my grandmas previous tests he was upfront and honest with us and says that he believes it is ALS we will have a repeat EMG tomorrow. He also said that although her weakness in the arms and legs was real he thought it was caused by something else. Has anyone else had this? Today was a hard day on me.... And I know it was horrible on my grandma but she was desperate for answers. Not looking forward to the road we have ahead of us but want to be prepared. I know every PALS is different but is there anything I can do from here on out to help. How fast is the progression of this. I know everyone is different and this question cannot be answered quickly I guess I am just wanting some feedback. Thank you.


Thanks for the recommendation for the ASL clinic. We felt muchore comfortable and the doctor seemed to take it much more serious.
 

KC2U2

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Re: Waiting/dreading Dr. ALS diagnosis.... What can I do as a caregiver?

Sorry for the diagnosis.
 

notme

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If he thinks the weakness is something else--perhaps when he retests her he'll find it's something other than ALS. Remember, it can be a multitude of things--ALS can only be diagnosed when all those other possibilities have been ruled out.

My thoughts are with you. Until you get a confirmation one way or the other, all you can do is be there for her if she needs to talk.

ALS tends, unfortunately, to progress faster in some older folks--but not always. Write a list of your questions and ask the doctor and/or clinic staff ALL of them. It helps to have a list of them written so you don't get home and realize you forgot to ask something important.
 

Hope1935

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Sad to say that the doctor gave us the final diagnosis of ALS today after the repeat EMG. Sent us home with some books and to write down questions. My grandma is very down over it. Wish there was something I could say or do... But as much as I've held back the tears and played the positive we will get through this card... I'm just as down and lost over the diagnosis. Any advice/prayers are needed.
 

Ms. Pie

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Hugs are good Hope. There are no words to make it better. Just hug her. I'm so sorry.
 

Zaphoon

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Re: Waiting/dreading Dr. ALS diagnosis.... What can I do as a caregiver?

I had pretty severe weakness in my arms that occurred over several months followed by weakness in my legs. The arm weakness was eventually attributed to bilateral frozen shoulder syndrome and the legs to PLS. An EMG 3 years ago cleared me of ALS.

My right shoulder is still pretty much toast my the left made a good recovery.

Frozen shoulder syndrome usually hits folks over 50 and I was right at the 50 mark.

I just read where your grandmother was given the diagnosis of ALS. I'm very sorry for this but what Liz wrote below is so valuable! Take Liz' advice and run with it!
 
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LizT

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hug her. kiss her. love her all the same. make sure she knows that this doesnt change a damn thing when it comes to the way you feel for her. this disease is horrid, but dont let it define her. she is still her. remind her that. often. and like I said- hug and kiss her. its amazing what physical contact can do for someones psyche.
So sorry you guys are having to deal with all this.
 

susanf

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We were all down when we heard our DX. Tell her the things in life to go on, family, friends and things she enjoys. I refuse to wake up every morning depressed. It's a tough road but with family and friends she'll get through it.
 

Hope1935

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Talked to her a bit ago and her mood seemed up some! She has been wanting to trade off her SUV for awhile now... Would y'all recommend getting a van first or trading for something and then getting the van later? She doesn't want a van right now but at the same time she wants to be sensible. Any advice?
 

notme

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She may not need a van at all--if she likes the SUV. There are lifts that will work with SUVs. Several types--electric ones and manual ones.

Start getting equipment she'll need--it's easier for her to learn to use it and become used to it before she needs it. At all costs--prevent falls. If her legs are weak, encourage her to at the least use a rollator walker (one with the nice seat) I'm glad her spirits are up a bit.

I'm sorry for the diagnosis--but now you know and can prepare to make things as comfortable as possible for her.

I'd take the docs suggestion--write down the questions you all have for the next appt. I'm sure they will get her care coordinated via the clinic locally. Contact the ALSA organization local to you. They will help you a lot with things! They may well have a loaner closet.
 

Hope1935

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Re: Waiting/dreading Dr. ALS diagnosis.... What can I do as a caregiver?

Thank you so much for your help. She did not think thre was lifts for SUVs. Her mother had a stroke when my grandma was 19 and she watched her lay there for 8 years.... This is a BIG concern to her. She also has a cousin whose husband passed away from ALS several years ago and she watched him go from perfect health to a downhill slide quick. This brings her fears out full fledged. We are now seeing a doctor at the ALS clinic which I'm so thankful for, but we live in a very small town and we are 2 hours from the doctor. I live close by in a town of 3,000 but she lives in a town of 450. When it comes to specific medical supplies we are somewhat limited. But I appreciate your advice on equipment I think getting her familiar with the equipment is an excellent suggestion that honestly had not crossed my mind. Thanks again for your advice. I greatly appreciate the help and support of those more familar with this nasty disease.. But I'm so sorry that those who are so familiar with it are under the circumstances that arise with it. May a cure be found.
 

notme

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Medicare will help with some of the supplies--MDA and the ALS association will help with other things, too. There are loaner closets--if not in you area, perhaps in a close larger area that will loan or through ALS Guardian Angels.

There are all kinds of assistive technologies now that there weren't even ten years ago. There are computers that can speak for her if she needs that down the road. Definitely look into a life-alert device for her now if she lives alone. They will put a monitor in her home she can speak into when she pushes her button. All kinds of things other members in the other portions of the board will be able to help you with much more than I can.

Be sure to contact the ALSA -- even the National branch if you need to. They will be of great help with questions. This part of the board is frequented by many of the members--as some of them get frustrated easily by all the "DO I have" questions. You are more than welcome to post in the caregiver support and general ALS question sections-or any section you'd like answers from.

I'm sorry you had to find us--but hope we can be of some help for all of you. Have your PAL come join us too if she wants.
 

helpingpals

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Very sorry for your diagnosis/ I am sure that there are support groups that your clinic can share with you. If your husband is comfortable with going I would suggest you both attending their meetings. They can be very therapeutic, educational and you will quickly learn that you are not alone in this battle.

Take the time to cry and hold each other. Your love will only grow stronger as you go through this.
 

notme

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Re: Waiting/dreading Dr. ALS diagnosis.... What can I do as a caregiver?

Thank you so much for your help. She did not think thre was lifts for SUVs. Her mother had a stroke when my grandma was 19 and she watched her lay there for 8 years.... This is a BIG concern to her. She also has a cousin whose husband passed away from ALS several years ago and she watched him go from perfect health to a downhill slide quick. This brings her fears out full fledged. We are now seeing a doctor at the ALS clinic which I'm so thankful for, but we live in a very small town and we are 2 hours from the doctor. I live close by in a town of 3,000 but she lives in a town of 450. When it comes to specific medical supplies we are somewhat limited. But I appreciate your advice on equipment I think getting her familiar with the equipment is an excellent suggestion that honestly had not crossed my mind. Thanks again for your advice. I greatly appreciate the help and support of those more familar with this nasty disease.. But I'm so sorry that those who are so familiar with it are under the circumstances that arise with it. May a cure be found.

I've got a friend here locally that has a motorized lift that would lift a wheelchair for her and put it in the back of her SUV. It would have to be installed, but he's selling it for only $500 since his father has passed away.

Something like this will be much less expensive than trying to sell her SUV (especially if she really doesn't want a van)

And you're right--this is a nasty disease! No one should have to deal with it.
 
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