Crystal’s thread

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crystal1

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Hello, everyone,

This is my first time using the forum. My husband was diagnosed with ALS three years ago. The specialists have given him a time frame of 3 to four years so he is in the late stages. Looking forward to communicating with others who are in the same boat so we can offer support to each other. Take care everyone and God Bless!
 

affected

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Sorry to be welcoming you here Crystal 💜
 

lgelb

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A sad welcome, Crystal. Let us know how we can help. Does your husband have all the equipment and support he needs?

Best,
Laurie
 

Elkhorn3

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Welcome, Crystal. You'll find a lot of wise support here. I have! My husband was diagnosed this June, and already is careening toward "late stages..." What a train ride. We all need each other, and you never know how your experiences might bring meaning to someone else. Thanks for joining.
 

Bradytwin2

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You are not alone. My PALS is my 62 yo brother. Diagnosed in June. Dealing with MS as well. Retired my job and temporarily relocated to be his caregiver in the home. He is losing abilities daily. We seem to be so late in getting him the support and help he needs. What a devastating days erase this is during these days when seeing anyone in person is unheard of here in NY.
 

JimInVA

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Greetings, Crystal! My wife, Darcey, showed first real symptoms in Nov 2012... but did not get correctly diagnosed until early 2014. Her progression started in her limbs... with legs and hands being the first parts to slowly lose function. In March 2015, her neurologist informed her that he believed she was in her last 6 months of life. Our son, then 28, was at Clinic with us that day. Today, nearly 5-1/2 years later, she's still with us. She can no longer move any body parts other than her face and (to a much lesser extent) her head. Her voice is fading and we've begun to use a letterboard or her eyegaze computer to communicate when her voice fades or fails her (often late in the day).

Thanks for posting! We hope you'll continue to do so!

My best...

Jim
 

JimInVA

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Greetings, Bradytwin2! My son is also in NY (Brooklyn). He's been there several years (pre-covid) and says so much has changed over the last several months as everyone works towards adhering to proper distancing (isolation). But that appears to be pretty much the same everywhere. If we'll be smart about this, we'll get past it. Let us know what problems you might be experiencing with your brother so we can offer ideas for consideration. There's a lot of collective knowledge among the many, CALS and PALS alike, who are here.

Also, thanks for posting!

My best...

Jim
 

crystal1

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Thank you, everyone who responded. Not sure how to reply to individuals. Laurie, thank you, yes, we do have the equipment we need although I am a tad scared of the Hoyer lift! My heart goes out to the gentleman whose wife has been suffering for the past six years. Take care of yourself.
 

Anjum nazir

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Can u please list the equipment s used by the pals...so that it can be confirmed whether we have all...
 

jonico

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Just want to say hi Crystal and encourage you to hang in there. Take it one day at a time. With ALS, the best doctors can't know if it will be 1 year, three years, five years or more. Each PALS is unique and there are ways to extend life beyond the usual 2-5 years life expectancy if one desires. Trusting you will find peace in the path you and your husband choose or the one that comes to you!

Note to Bradytwin2... We are in NY and my PALS' primary care physician (also the local ALS Center's doctor) always comes to our home. She is amazing. She couldn't visit for a while during early COVID, but now that NY has a pretty good handle on things, she is making in home visits again. Visiting nurses are coming here as necessary now as well. Please check in with your brother's local ALS Center or contact the ALSA Upsate NY Chapter office in Syracuse for advice, if your brother is upstate. Not sure about downstate. Happy to message with you too if I am qualified to do so...don't know the rules on that. Anyway...wishing you and your brother all the best. You are a gem for doing what you did for him.
 

lgelb

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Anjum, the Equipment sticky may be of some help to you. And, ask us anything. There isn't one list for all PALS, but probably top of the list are a hospital bed, a mobility device such as a power wheelchair once a walker is not enough, a BiPAP, a Hoyer-type or ceiling lift for transfers, a feeding tube or the ability to eat, communication technology or the ability to speak.

Crystal, I'm going to disagree with Jonico a little that no one can distinguish between one-year and five-year survival. There are models on line based on published research, your doctor can provide more clarity, and prognostic factors such as age of onset, type of onset, early deterioration rate, etc. are well-established though not set in stone.

I do agree that there are ways to improve both quality and to a lesser extent, quantity of life. We should also be clear that not everyone decides to follow along with nature to the end, and you always have some control over both.
 

crystal1

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Myself and the ALS specialist agree that my husband has had ALS for a long time, way before he was diagnosed. He was showing symptoms about 20 years ago: always dropping things etc. His personality has also gone through changes. His memory started deteriorating years ago too and he became more irascible and nasty tempered.
 

vltsra

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Dear Crystal, sorry to welcome you here. We are heading toward our 5-year anniversary since diagnosis.

Take it from me, the Hoyer lift is your friend! We started using one about 9 months ago and it has saved both of us. I still have to use my back and muscles during transfers to make sure he is situated properly but I am much smaller than my husband and there is no way I could have lifted him. It's easy to use once you get the hang of it. We have 2 slings, it took a little experimenting to find out which one would work best, but we have one for most of the transfers and one that we use for the shower that gets wet and is a split leg. He fell twice in our home before I insisted that he allow us to use it. Now I'm so familiar that I had to show the nurse in the hospital how to use it with his sling.

I'm sorry that your husband has become nasty tempered and also sorry that his progression sounds very slow. My PALS is sometimes very demanding and irritable and I hate to admit we have had some arguments about it. I can't imagine how it feels to not be able to do anything you enjoy and not be able to move your body to help yourself, and I don't suppose I would be any more even tempered. We are both on anti depressants, I could not function before I started taking one.

The forum has helped me deal with this monster. I've gotten so much support and advice here.

V
 

ARCG

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Hi Crystal,

Sorry you have to go though this. My pals was diagnosed 6 years ago, but looking back we also think he had it for a while before. You will find good support and understanding here.

We have been slow progressing, but are entering the later phase I think. Having the right equipment in place does help and can improve quality of life. Everyone's progression seems to be a little different, but you will find folks on here who can give you good, honest advice.
 
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