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AngelaRenee

Active member
Joined
Sep 11, 2012
Messages
66
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Loved one DX
Country
US
State
Ohio
City
Cincinnati
Hello. My mother is getting worse by the weeks/months it seems. She lost her balance and fell while I was with her last week. I feel so terrible b/c I was unable to catch her. She can still eat most foods with her right hand, although she can only use a few fingers. Her speech is understandable most of the time but is slurred. Her upper body is getting weaker to he point its harder for her to lift herself. She can walk but has stiff legs and shaking. She was experiencing a needle like sensation in her foot. Is this normal? I see her Mondays and Tuesdays, her sister comes on wednesdays when she is not working but the rest of the week she is by herself until my father gets home. Although I only see her a few days the rest of the week I am constantly thinking of her. Wishing this woud all end and that she didnt have to suffer. She is only 52 years young. Never in my life could I imagine this would happen. I really don't want to take depression pills but its so hard for me to deal with this. I love her so much. I guess I just needed to vent. Thanks for reading.

-Angela
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
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Colorado
Call your local ALS Association. They may have some suggestions of help. Does she get Social Secutity or Medicare?
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
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1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
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Ottawa
Angela,

You sound like a woman everyone would want as a daughter. Your entire family is in a tough spot.
Ms Pie is right and I hope you reach out as she recommended.

As to anti-depressants, I always felt the same way you do. In fact, I never really got why people actually needed them. Duh! Is me. I started on Wellbutrin ( mood elevator & energizing component) in December. Gotta tell you, my mood is pretty well the same (usually happy), but my energy level has really improved. This allows for clear headed thinking, patience and less fretting.

You may want to speak to your GP. There's a long and bumpy road ahead.
 

AngelaRenee

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Joined
Sep 11, 2012
Messages
66
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Loved one DX
Country
US
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Ohio
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Cincinnati
Thanks Elaine. Ms pie she is in the process of applying for ss and disability. We are going to an ALS support group next Monday so maybe I can find resources for help. Elaine, what does the GP stand for?
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,506
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PALS
Diagnosis
04/2012
Country
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Sorry Angela. It means general practitioner or family physician.

Happy you're getting the paper work done. You will learn a lot at the support group -especially the need for proper equipment, such as canes, walkers etc. Better safe than sorry.


Thanks Elaine. Ms pie she is in the process of applying for ss and disability. We are going to an ALS support group next Monday so maybe I can find resources for help. Elaine, what does the GP stand for?
 

cervus

Senior member
Joined
Mar 18, 2011
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923
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Lost a loved one
Diagnosis
11/2010
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CA
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AB
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Leduc County
I agree with everything said already. It is a long road ahead in some ways but short in others. Your mum might not be "suffering". Live life, all of you, while you can. It's hard. And you have every right to want to vent. Don't know what the needle like sensation is? Take care, Angela. Yasmin.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,146
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00/0000
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WA
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Seattle
Hi, Angela, if your mom is falling it might be a good idea for her to have a mobility aid, especially for when there is no one with her. A rolling walker with a seat could last her for a while.

The needle-like sensation can relate to a neuropathy, as with diabetes, or diminished mobility and atrophy. My husband also notices similar pain in the weeks before a nerve "dies" as well as diabetic neuropathy, herniated cervical disks and neuropathy that he has from another disease. It is very hard to separate out nerve-related pain when someone has more going on than ALS, but if it bothers her a lot, she could ask the doc about trying gabapentin at a low dose.

You both might want to read through her EMG report and talk with the neuro about other types of pain that she may need to deal with in the future.
 

jacquie

Member
Joined
Dec 30, 2012
Messages
26
Reason
PALS
Diagnosis
07/2012
Country
US
State
IL
City
Sugar Grove
Hi Angela,
I am a PALS, 54 years old. Reading your post has helped me to understand my 22 yr.old daughter, who is distraught over my diagnosis. I don't know about your mom, but perhaps what she needs is family and friends to just love on her, and help her to laugh and have as much fun as possible. This is what gets me through. Good times with friends is so important, really helps me cope. Sometimes it can be overwhelming, and I cry, but 'suck it up' and get back to living, rather than dying. I have a wonderful walker, a Drive brand, with 4 wheels, brakes and a seat. Without it I couldn't walk. I really recommend it. The hardest part for me is being strong for others, and never really being able to grieve myself. If you can handle it, let her know she can grieve freely with her family whenever she needs to, then get back to the business of living. Best wishes for your family.
Jacquie
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Hi Angela,

I am sorry about your mom--52 is young. I don't think she sounds too bad off yet so you need to try and thing about her living not her dying. It is hard I know--I spent alot of time crying and grieving in the begining. But for her sake and yours you need to try and enjoy what the two of you have now. focus on what you can do now to make her life easier and that will help you deal with everything better.

Falls are very dangerous for anyone especially pals. first thing, think about a walker or scooter for her especially if she is home alone for any time. My husband was home alone during the day from10-3 for a couple years, we got him a scooter even though he could still stumble around becasue it was too dangerous. It only takes one bad fall in on a hard tile floor to put her in the hospital or worse. Another thing we did and still do is set up skpe and instant messager so we can chat durig the day. If my husband was not one for more than a half hour, I would either go home or call a neighbor to check on him. maybe you could set up regular contact times during the day with her. You should start working on a PWC now even though she can still walk--it can take a couple of months to get it and better it sits unused for a bit than her being stuck in a chair or bed while you wait for it to arrive. As soonas her medicare goes through you should talk to her doc. does she attend an ALS clinic? they will be invaluable to you to get the equipment she needs.

I am glad you are there for her and I am glad you are here. You do need to vent and talk about what your family is going through. see if you could get in with a therapist to deal with your grief (that is what you feel), and don't turn your back on "happy pills" you are facing a huge and life changing event and it will be tough.

best to you,
 

Compass Rose

Distinguished member
Joined
Jun 20, 2012
Messages
133
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Loved one DX
Country
US
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WA
City
Seattle
Angela,

I really feel for you. It's my brother who has ALS, not my mom, but I'm very close with my mom and can only imagine how difficult it is for you. Feel free to vent here. This forum is a community of wonderfully supportive people who understand what you're going through like no one else can. I found this place in a fog of shock and grief after my brother's diagnosis and it's helped tremendously.

I second Barbie and Ottawa Girl's thoughts on the anti-depressants. They can do wonders to pull you out of a hole and get you to a place where you can think more clearly and take steps forward. As Barbie said, having a loved one with ALS is a major life event and very difficult to deal with. Feeling overwhelmed and/or depressed is understandable. But you need to be strong for your mom and focus on the time you two have together.

My thoughts are with you.
 

AngelaRenee

Active member
Joined
Sep 11, 2012
Messages
66
Reason
Loved one DX
Country
US
State
Ohio
City
Cincinnati
Thank you all so much you all have wonderful advice. The problem in my mother has trouble grabbing with her fingers/hands. Is there a powerchair or something she could still use while at home by herslef?
 

SMP51

Senior member
Joined
Oct 31, 2011
Messages
675
Reason
CALS
Diagnosis
11/2010
Country
US
State
FL
City
Fort Walton Beach
Angela, when we told our son of his dad's diagnosis I am sure he felt all the things you are going through. He was in his senior year of high school and I am so proud he held it together and graduated, he had every excuse to spiral and fail. I am sure your mother is proud of how you are working to be strong for her too.
When he asked if there was anything to fix ALS we were honest, and when he asked if that ment his dad was going to die we were honest about that as well, but we also talked about the fact that we all are going to die and his dad wasn't going to die today, next week, next month or this year.... just like everyone else we don't know when God is going to call him or us home. ALS has made us very aware of the truth that has always been there... the time we have with our loved ones is precious, spend it wisely.

God bless you, your a good daughter
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Hi hon

I'm sorry you're dealing with all this.

Yes, your mom needs a wheelchair or some means of not falling, especially if she's alone several times a week. SSI is pretty quick for PALS, as there is no waiting period for Medicare to kick in.

In the meantime, contact the local ALS society and or MDA. Theynhave loaner closets for needed supplies. Obviously with limited hand use, she needs a power chair not a manual. Sometimes, if funds allow, you can find cheap ones on Craigslist to use temporarilarily.

Falls are just too serious. She could fall while she's alone and be unable to get herself up.

As to feeling guilty about not catching her...I fell just today and my daughter couldn't catch me. She tried. It happens, and it's not your fault.

Your mom might want to look into a PEG as well to help with nourishment, if she's decided to use it. Is she with a good clinic? Are there trials she can get into?

Take care and vent whenever you need to!
 
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