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LindaB

Member
Joined
Mar 19, 2008
Messages
16
Reason
CALS
Diagnosis
03/2008
Country
US
State
Ct
City
Milford
Hello to everyone- I am new to this forum and having a hard time. I am a 64 year old woman who lives in Connecticut along the shore in Milford. I have been married to my wonderful husband for seven years. (Second marriage for both).
In November of 2006, I had spinal fusion surgery. The bone protein they put in, spilled out into my system, and I had repair surgery in March 2007. I came out of that surgery slurring my words, and bulbar symptoms progressed from there. I have been dignosed with everything from a stroke to Myasthenia Gravis. Symptoms have progressed with weakness in both legs and foot drop in both feet. I have had muscle twitching in both legs and some slightly in arms. This had been due to taking Mestinon, which I still take. Mestinon is for Myasthenia but it helps me quite a bit with weakness. I never was able to get my gait back after the back surgery. Also, I fell on a cruise ship in September quite badly and fractured my spine. All symptoms have been worse since then.
Last Tuesday, my neurologist changed my DX to ALS from Myasthenia after a second EMG. I am going to Columbia Hospital in NYC next Tuesday for confirmation.
Well, of course, myself and my entire family are in grief and disbelief over the DX. I have been crying for days. I pray constantly for a miracle and for some peace and acceptance.
I live here alone with my husband who is wonderful and caring. He is my angel, and is taking on all the care alone. I know that I will find some solace and friendship here on this forum. I need to know what to expect.
Thanks for listening to my story. I did shorten it quite a bit.
LindaB
 

DeeMichelle

Distinguished member
Joined
Mar 20, 2008
Messages
118
Reason
Lost a loved one
Country
UK
State
Hertfordshire
City
St Albans
I'm sorry to hear your story you've been through such a lot, but I'm so glad to hear of the love you have with your husband. In my own family we have familial ALS and whilst this has been shocking it's really brought us altogether. My Dad is in the middle of a possible diagnosis tho' not certain and he's losing the ability to speak and swallowing is very much affected. However, he's held onto his independence and my mum's been amazing developing a nutritious, tasty and palatable menu for him and just loving him. He also still does things for her and I think that helps them. Glad you have each other for this difficult journey and I wish I could say more to help you.
Dee
 

WeidemannB

New member
Joined
Mar 25, 2008
Messages
1
Reason
Loved one DX
Country
US
State
Virginia
City
Reston
Linda, I'm so sorry to hear about the struggles you have been going through. My heart goes out to you. I, too, am new to this forum, and new to ALS. My father was recently diagnosed and I'm eager to learn all I can to help and support even though there is quite a bit of distance between us. As a patient of ALS, what are things that you feel family can do to support you and help you through this difficult time?
 

LindaB

Member
Joined
Mar 19, 2008
Messages
16
Reason
CALS
Diagnosis
03/2008
Country
US
State
Ct
City
Milford
supporting family

Hi, what a good question about what the family can do to support a newly diagnosed ALS patient. When I first heard the diagnosis, I was sitting in the doctor's office with my husband. I was stunned and thought I was in a bad dream. My husband took my hand and his face was bright red with high blood pressure. I remained calm until we were in the car on the way home. Then it started. I cried and cried and cried. I cried almost the rest of the day . Bill, my husband just let me go at it for awhile. He held me in his arms and handed me the kleenex. He told me how much he loved me and how we would go through this together. He did not tell me to stop crying, and I love him for that. I have five children from my first marriage, and one of the first things I did was phone my daughter . She also let me cry and said she would be at my home the next day. She cried with me, but not at me. I love her for that. This was my main fear, that my kids would be so upset at the thought of me leaving them. They lost their father at a very early age, (all five were under age 8) and I have been their rock every since.
One by one, I made those calls, and when I couldn't call anyone else, my husband did for me. My daughter and four sons have been very strong which helps me feel less guilty. One son is in denial which has been hard on me. My granddaughter who is so close to me is devastated, but not going hysterical on me. Everyone agrees with me that this is a terrible thing and they are shocked. they are affirming my thoughts. Everyone assures me that they are praying for me, which makes me feel good.
The best thing I can say is that they are all letting go through the emotional stages that I imagine everyone goes through. My husband has been a rock for me to lean on. He is recently retired, so thankfully I have him here all day. I cannot believe that all of our dreams for growing old together will not come true. Most of my grieving is for him. He lost his first wife to cancer.

I guess the best thing a family can do is "be there" for the patient and let them go through what they have togo through. It is OK to cry and be frustrated. A loving touch, an embrace, words of love, and once in a while a smile or funny memory has helped me go through the one week that I have had the news that I have ALS. I have finally settled down a little bit and don't cry so often. I even watched Dancing With The Stars last night. I am sure I will adjust. Thankfully no one has told me how to feel and what to feel.

I'm sorry that I made this so long., but hope it helps.
Linda
 

LindaB

Member
Joined
Mar 19, 2008
Messages
16
Reason
CALS
Diagnosis
03/2008
Country
US
State
Ct
City
Milford
HI, I wonder how the smiley face got into the post. The kids were all under age eight. Also, I wanted to say that all of my children are also a distance from me, as well as my sister. We use the computer every day.
Every morning, I have a running diaglogue with my sister on the Internet. We reminisce about our childhood, and share secrets. I cannot speak on the phone so that is out. My daughter is coming on Saturday with my sister. They are at least within driving distance.
Good luck to you and blessings to both you and your dad. I am praying for everyone with ALS.
Linda
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
I just spent over 20 minutes replying to your post, only to have the Internet delete all I had written. Garrrr! :evil:
Linda, please know that we are here for you anytime you need a shoulder to cry on, to vent, yell, whatever. You are not alone. We are in this together.
I'm so glad to hear you have the support of your family, that and my faith in God are what helps me the most with handling this terrible disease.
Please consider the forum members as a part of your extended family. :)
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Linda. Welcome to the forum. You sound like a strong woman. I cannot help being impressed that you raised 5 children as a widow! You are so right that the support of family and friends goes a long way. THank you for sharing your story with us. Cindy
 

LindaB

Member
Joined
Mar 19, 2008
Messages
16
Reason
CALS
Diagnosis
03/2008
Country
US
State
Ct
City
Milford
Thanks

Thank you to everyone who welcomed me to the forum. Everyone seems so very nice. I can say that it is very comforting to know that I am not the only one who is dealing with ALS, not that any of us want to have to. Some people have told me that they have never heard of ALS, which I find incredible. Then they look it up on google, and get back to me armed with all kinds of answers like" this is something that lasts for at least ten years', or" this is not so bad, people live quite nicely with it". At least on this forum, I will be able to have contact with others who are actually dealing with the many questions and issues I will be facing.
Well, one good thing..I am not crying all day and night now, just once in a while. I think I am beginning to settle down , and revisit my faith, and my family. I am worried tho, about my husband. He is the only one taking care of me, 24/7. I am unable to turn over myself in bed at night, and I find myself waking him up every two hours to help me. He is 65 years old, and now has to do all the cooking and cleaning, as well as lifting me, helping me to the bathroom, getting me in a shower chair, then out of it, dressing me, getting me in and out of bed. This, on top of the emotional stress he is feeling.He hasn't been sleeping well at all. He is always there for me, but I can see that he is not having any break at all. How are others in the forum handling a situation like this? Maybe they will give us some answers at the ALS Centre. Seriously, when Bill goes to the store, I worry so much that he might be delayed, or in an accident. What would I do without him? I wonder if my doctor even realises how helpless I am. My daughter is over one hour away by car with two handicapped children. She is the closest to us. How can I make someone else aware of my situation?
thanks, Linda
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,420
Diagnosis
09/2007
Country
US
State
USA
City
Any
Linda,
Oh I wish you lived near me, or my family, we would help you without a doubt. Let the MDA and ALSA, helping hands in als, you should have some respite care avaliable for your husband as well as your peace of mind, at least to help with some daily chores, etc. Even local churches, friends, etc. Sometimes friends just dont know what to do, and maybe if someone can round them up they could work something out for a little help. It sounds like your daughter, has her hands full, bless her heart, but maybe she could let friends and family know that any little help would be a blessing. Hoping
 

LindaB

Member
Joined
Mar 19, 2008
Messages
16
Reason
CALS
Diagnosis
03/2008
Country
US
State
Ct
City
Milford
Hi,
I just read your post and then looked up the ALS Assoc in Connecticut. It happens to be right here in Milford where I live. Now I have to let my husband know about this and get him to ask for help. Next Friday, we are going to Columbia Hospital in New York. Hopefully, they will steer us in the right direction. We will be sure to ask. I did not know those services were available so thanks for that information. My daughter is coming down on Saturday with my sister, and I will encourage my husband to take some free time then, at least for a few hours. I am trying very hard to keep my emotions under control as I can see that it upsets everyone.
Linda
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,420
Diagnosis
09/2007
Country
US
State
USA
City
Any
Linda,
So glad that maybe you can get a little mental relief. I am sure Columbia will have some answers and guidance for you. Project ALS is affiliated with Columbia and they are very early on research and such, so I think you will be in good hands.
You are never alone, someone is always around the corner to help, we just have to find each other. I have read so many books written by ALS patients and caregivers alike, and one thing seems to hold true for all, the people around us take our lead, if I cry about my illness they cry, if I smile they smile. We are here for the crying, the venting, the just here part, so let it out, we all get it. Sometimes I feel like this is the only place in the world that really gets me.. My family loves me, my friends help me, but you guys, and you guys alone, get me... So glad you have found us...
 
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