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pez

New member
Joined
Jun 25, 2006
Messages
5
Reason
PALS
Country
US
State
massachusetts
City
uxbridge
Hi
I Am New To This Website
I Am A The Main Caregiver To My Husband Of Two Years
This Is A Very Hard Thing To Watch
My Husband Is 35 And We Both Just Watched Our Moms Die Of Cancer Within 9 Days Of Each Other
It Is A Very Hard Concept To Grasp That This Is Our Life We Are Just To Be Starting Our Lives Together
Some Of These Doctors Are So Depressing
It Seems Like So Much To Figure Out At Such A Young Age
My Husband Is Not Driving And Has Not Been For Like 6 Months Smart Decision, But A Lot On Me, I Help Him Run His Business In Addition To Working Full Time And Taking Care Of Him
He Is A Wonderful Man And I Adore Him It Is Just So Hard
What Do Any Of You Do When You Do Not Have Any Help From Others And You Cannot Take Time For Yourself Just To Breathe?
Any Suggestions Please Send Them My Way As We Are Both So New To This..
Pez
 

terri

Distinguished member
Joined
Jul 7, 2005
Messages
126
Hi Pez,

I too am a caregiver with no help so I do know how hard it is. You will find lots of support in the forums. I have found that when I need help, the people here always come through with some wisdom to help. Where we live there are not any support groups close by so I really can't speak on how they help but many others find them helpful. You do need to find time for yourself. Even if it's just a short walk, I find some time to just get outside by myself. Hey, I've even gone outside and swatted bugs just to relieve frustration!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Pez. Welcome to the site but it is sad that you have to be here. You don't say where you are from but here in Ontario the Community Care Access Center has people that will assist you with getting through this. The ALS Society of Ont. helps and the Hospice will send a respite person to give you a break. There are a lot of options , you just have to know where to look.
 

pez

New member
Joined
Jun 25, 2006
Messages
5
Reason
PALS
Country
US
State
massachusetts
City
uxbridge
Thanks

Hi Al And Terri
As I Said I An New To This Website So Please Be Patient With Me On Using This.
I Think I Am Doing It Correct And Feel Free To Let Me Know If I Am Not.
I Want To Thank Both Of You For Replying To Me It Feels Good
We Live In And Around The Boston Area And There Are Some Helpful Things, But The Doctors Are Not Trying All Treatments Or Etc. On My Husband
In Some Ways You Have To Do Your Own Researching As You Both May Know
I Am Looking For Information On Stairlifts And If Insurance Helps Out Or Not.
If Either One Of You Know Anything Please Send It My Way
Thanks Again So Much
Pez::-d
 

Beebe

Distinguished member
Joined
May 2, 2006
Messages
319
Diagnosis
4/2006
Country
oce
State
new jersey
City
forked river
Hi Pez

Hi there you are so young too . My son-in-law Jack is 42 today. He was diagnosed April 2006. My daughter is 34. She has to have surgery re-done. Had herniated discs etc. last year had cadaver bone and metal etc. inserted in her neck and she's not healing . She goes to work drives quite a distance every day comes home exhausted. She's a walking time bomb. Worry about Jack and her. Didn't intend to go off track too much but can understand your frustration. We spend a lot of time together they live a few blocks away. I had found a research study starts in July at Mass. General Ceftriaxon. They are suppose to have something in Philadelphia closer to us we are going July 11th. When was your husband diagnosed. How is he doing? Jack has stiffness in fingers weakness in his arms, his walking is stiff looking too. We talk a lot talk to family, friends, need that. We laugh we cry and take one day at a time. Sometimes its hard to express exactly what you want to say in writing, just know we are all in this together. Hang in there! My Best to you. Beebe
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Pez. Did you try the Muscular Dystrophy Association? ALS comes under their wing now and I have heard that they are able to help families with mobility aids. Call the local chapter. Try the local service clubs. Lions,Kiwanas ,Rotary, Shriners etc. As far as the makers of the lifts I have some info on that if you are looking for that. Let me know. AL.
 

pez

New member
Joined
Jun 25, 2006
Messages
5
Reason
PALS
Country
US
State
massachusetts
City
uxbridge
Thanks

Hi To Beebe And Al
I Really Do Appreciate Your Thoughtfulness Both Of You!
Thanks I Will Check Into Muscular Dystrophy.
I Spoke To Someone Today Who Said To Check Into Catholic Charities Also.
Any Help On Stair Lifts Would Be Great. My Husband Was Recently Diagnosed In April, But Having Symptoms For A While. We Have Tried Everything Under The Sun From Herbal, Vitamins, Organic, Spinal Therapy, Glyconutrients, In Addition Tons Of Money None Of This Was Covered By Insurance. We Have Tried Every Alternative Thing We Could Find And Nothing Seemed To Work. Jimmy Is Very Weak. I Help Him Get Dressed, Make His Meals, Everything.
He Owns A Business And I Think That Is Good For Him To Keep It Going. So In Addition To My Full Time Job, I Do All The Company Paperwork And Take Care Of Everything At Home. His Brother Works For Him So He Is Pretty Helpful. We Were Told Not To Have Children Because It Could Be Heriditary Although We Cannot Find Traces Of It Anywhere. So That Is Hard Because We Really Wanted That Being So Young. Yes Every Day Is A Challenge, But He Is Great And Has A Good Attitude. Thanks Again For Listening
Pez
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Pez . Sorry you have spent so much money on useless remedies. Who told you not to have children? If there was diabetes or cancer or heart disease in your families would they say not to have children? It would not be easy looking after small children and your husband but do what is in your heart. There is only a 5-10 per cent chance it is hereditary. If there is absolutely no other ALS in the family the odds may be less. There are people on here that have small children and some say it is the only thing that gives them hope. Do what's best for you and your husband, not for someone else.
 

ekoozmin

Active member
Joined
Feb 24, 2006
Messages
46
Hi there Pez--Sorry about your husband, and that;s just horrible about both of your mothers. How sad for both of you to be grieving for them as well as dealing with this disease. I hate to say this, but based on your posts, it doesn't sound like you have been offered much guidance from Jimmy's doctors on how to live with this disease. My comments below are based on caring for my Dad, who's had ALS for 18 months and declined very rapidly.

1. I agree with Al's sentiments about the risks and having kids. Here are two articles worth looking at:

http://www.mdausa.org/publications/als/als11_2.html#laughing

in which Jeff Lester writes about having ALS and having a young family, too. Yes, he even got his wife pregnant after diagnosis! It's a humorous article. I read it to my Dad, who has ALS, and I got a rare smile from him.

http://www.alsa.org/files/cms/Resources/Genetic%20Testing%20for%20ALS.pdf

This is an article that describes the genetic form of ALS and will give you some guidance about testing. The way I read it, your husband could ask his neurologist to order the test, maybe it would give some piece of mind. Don't let them dismiss your concerns. You have enough stress!

2. Boston has four ALS clinics, and one of the ALS research centers in the country at Mass. General. He should try to attend the ALS clinic there. Just call and make an appointment--they'll guide you through the rest. If you're currently using a neurologist who has no background in ALS or who is not affiliated with a research hospital, it may be time to find another doctor, preferably one associated with MGH or another university hospital. Don't feel guilty about switching docs--just politely ask for his records to be transferred.

Beth Israel Deaconess Medical Center
330 Brookline Avenue
Boston, MA 02215
Medical Director: Elizabeth Raynor, MD
617-667-8130

Lahey Clinic
Department of Neurology
41 Mall Road
Burlington, MA 01805
Medical Director: James Russell, DO
781-273-8000
www.lahey.org

Neurology Associates, ACC 835
MA General Hospital
15 Parkman Street
Boston, MA 02114
Medical Director: Merit Cudkowicz, MD
617-726-3366

University Campus of MA Memorial Health Care
55 Lake Avenue North
Worcester, MA 16550
Medical Director: David Chad, MD
508-856-4147

3. The local ALS Association chapter is another good resource for help with communication, assistive devices, loan closet, etc. They usually work closely with the ALS clinic so everyone is on the same page.

Massachusetts Chapter
75 McNeil Way
Suite 201
Dedham, MA 02026
781-326-8884
1-888-CURE-ALS
781-326-4940 (fax)
[email protected]
www.als-ma.org

Massachusetts Chapter - Wakefield office
7 Lincoln Street
Wakefield, MA 1880
800-258-3323
[email protected]
www.als-ma.org

4. Is Jimmy weak because he has lost weight? Or just weak from fatigue? Or both? Has he seen a pulmonologist to get his FVC measured? The ALS clinic should also have a pulmonologist on hand to evaluate this. Be prepared to discuss such traumatic issues like when to have a feeding tube, making decions on ventilation, etc.

5. There are lots of drug trials around. NIH has a site that describes clinical trials and where they are being conducted all over the country. Bring the list to Jimmy's doctor and insist he sit down with the two of you and discuss possibilities. Maybe wait until you enroll in an ALS clinic. Try these links:

http://www.alsa.org/patient/drug.cfm?CFID=1924868&CFTOKEN=86503769

and

http://clinicaltrials.gov/

Please don't take anything I've written as medical advice--just stuff to think about. hang in there--you sound like a wonderfully supportive and caring wife. Don't burn yourself out--leave a little time to care for YOU. Let us know how it's going!

Liz
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Thanks Liz. Once again it helps to know where someone is from to be able to give information that is pertinent to where they live. It's great to have knowledgable people here to help out. There is a lot of information out there and it is difficult and very time consuming for someone to find it all and sort the good from the bad. Thanks again for your input. AL.
 
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