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Elo

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Mar 16, 2006
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I am new to this site and would love to see how other members are coping. My husband was diagnosed with ALS last year, even though he had symptoms for about 4 years. He has lost practically all the muscles in his legs and can barely move around now. The weakness is also in his arms back and chest areas. Has anyone experienced a slow-down in their symptoms at any point of having this illness? His started out slowly and progressed slowly, at first, but now it seems to be coming on stronger.
My husband is trying different vitamins and I am wondering if someone has found a vitamin and diet regimen that really works for them. We have cut out dairy products from his diet, wheat, corn, all breads and pastas...does anyone have any idea if these are good or bad for ALS?
Did anyone have to make structural changes to their home? we have a 2-storey and the stairs are a challenge, any ideas would be helpful.
Another thing, how could he get out of the house efficiently to the car, for social activites or for apointments? This year we have hardly been out because it is such a problem. Does anyone have any ideas about passing the time constructively with this illness? Your ideas will be appreciated, Elo
 

Al

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PALS
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Country
CA
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OK Jerry. If you want to bash restaurants and MSG and Aspartame on other forums that is between you and them. We recognise your right to a point of view but when you call doctors ignorant and you were warned recently about name calling obviously being paranoid as you call your self comes with certain other traits that are unacceptable on this forum. Consider this a second warning. We don't bash other peoples ideas here. This is a forum for support and knowledge and not the place for conspiracy theories and closed minded individuals raving about the health care system in general.
 

Granny

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May 18, 2005
Messages
205
Dear Elo,
Welcome to the forum. Sorry for the reason you are here, but this site offers lots of help and comfort. When you need a place to talk or ask questions, there are always some people here who understand what you are going through.

I know that ALS progresses at different rates in different people, and sometimes will slow down for a period of time. Don't think anybody knows why this happens.

Some people on the forum have developed a regimen of diet and supplements for themselves through research or with their doctor's help. If you look through some recent threads you will find a discussion about this. I can't remember the heading right now. I am sure others will come on and tell you what they do. Most of us try to find something that is a happy medium between trying to stay as healthy as possible and living in a bubble where most things are forbidden.

I am in the same boat as you in that we have a two story house. Right now the stairs are not a problem for me, but they will be. What to do is a headache! Sorry your husband has not been able to get out. That is improtant. Could the local aLS society help with ideas? Help seems to vary in different areas

To amuse myself when I am house bound I knit and stuff little "Teddies for Tragedies". They are little teddy bears that we send by doctors going to third world countries to help in clinics for children. The bears are cuddly and the children enjoy them. This is probably not something your husband would enjoy!

This is not much help, but just wanted to welcome you and let you know that this forum is a place with caring people with lots of knowledge and a little humour thrown in.
Hugs and prayers, Leah
 

dana

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Mar 17, 2005
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Hello,
My parents also have a two story house, and of course their bedroom is on the second floor. Well, when dad came home from the hospital last week with the ventilator, we had to make some adjustments and make a room for him downstairs. We were fortunate enough to have 2 bedrooms downstairs, including a master bedroom with a bathroom. My parents had added the second story (which was just their bedroom) 3 years ago. So now, they are using the downstairs master bedroom instead. I know it is hard for my dad not to have his beautiful room upstairs, but now he gets to have his "new" room decorated the way he wants with Star Trek posters and all. Such a man thing to do.
Dana
 

ladave

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Feb 12, 2006
Messages
136
Dana-

Your dad's a Star Trek fan? Me too. Now that would be en interesting epidemiological question. Forget head trauma, toxics, msg, etc- how many PALS watched Star Trek reruns:)
 

dana

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Well if Star Trek reruns is the cause, then we are in big trouble! Seems that is all dad watches on tv anymore. My brother doesn't help the situation. He just got my dad the first season on dvd, so now dad can watch it any time he wants. We will see if this makes the disease progress any faster. HAHA If anything, it is giving all the women in the house a headache. We are having to give up Oprah for Capt. Kirk...now that is a problem.
Dana
 

Mary Helen Barr

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Joined
Mar 6, 2006
Messages
61
My father desperately wanted to get a stair-lift for the steps of his 2 story house (actually 3 if you count the garage/basement level). However, just getting ON it and getting seatbelt fastened, and then getting off of it at the top of the steps seemed undoable, and much more risky than necessary. My parents moved to an apartment a few months ago. Mary Helen
 

MarciaA

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Mar 13, 2006
Messages
116
Reason
PALS
Country
US
State
MN
City
Owatonna
2-Story house modifications

My sister lives in a 2-story house with no bedrooms on the main floor. Their initial plan is to put in ramps to the front and back doors now...she's not needing them yet, but will. We're hoping to make the ramps and new deck area beautiful and functional all at the same time to help with her spirits. They have a half bathroom on the main floor that they are able to enlarge and will put in a handicapped accessible shower. They have a living room area off the back of the house that they will turn into a bedroom and will widen doors as necessary to accomodate wheelchairs. Luckily, my brother-in-law (her husband) and my husband are both very handy with construction jobs so much of the work we will be able to do ourselves and with the help of friends. Many friends have already volunteered to help with construction even though it can't begin until the snow goes away...we just got dumped on again this week with close to 10 inches. :-(

Anyway, that's our plan to help with the 2-story house dilemma.

Marcia
 

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,028
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
Elo, welcome to the forum.

Unfortunately medicine doesn't offer us to much to help us cope with ALS but technology does. If you can possibly arrange/afford it, I would urge to abandon your 2 storey house and move to a one-level accessible accommodation. I had a 2 storey house that I dearly loved. I had been there for 25 years, liked my neighbours. location and garden and had an architect in to see if I could make the place work for me. He offered some suggestions but I decided it was more compromise than I wanted and bit the bullet and spent a year looking for a suitable one-level. It has been a huge benefit. It took some minor ramping and door widening, bathroom renovations, etc. but now I have a house that is very enjoyable for me living on a scooter. In additon it has a basement which I will renovate to provide a separate apartment for an eventual caregiver.

Which brings me to the second point. Transportation. For me at least, regular and easy transportation is essential. I first bought a cheap ($900) Pride, 3-wheel Go-Go scooter that I still use for moving around the house. Coupled with this was the purchase of a used, lowered floor Chrysler mini-van with self-deploying wheelchair ramp. After 2 years of struggling with commuting to work and shopping with cane and walker using a regular car, life is now almost as easy as for people who can walk. I commute to work, go to the theatre, do my own shopping, go to restaurants (the accessible ones, grrr) and public events without much thought. I now have 3 scooters - the small go-go for inside the house, a larger 3 wheel one for shopping, work, etc. and a large 4 wheeler for going about my garden, trail riding and longer excursions on roads. The van of course is absolutely critical to all this. When I first had my small scooter I relied on others to take it apart and load it my car. It does break apart easily but really needs a second person which defeats the whole purpose of providing independence and ease of mobility.

Hope this provides some food for thought.

-John
 

dana

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Mar 17, 2005
Messages
216
The biggest piece of advice to keep in mind with this disease is to try to stay two steps ahead of it with getting your house and equipment in order (if at all possible). You really throw yourself into trouble when you wait until last minute to make renovations or order equipment until when you REALLY need it, at least that is what we have found. If at all possible, try to make the changes to your home now (or as soon as the snow melts), and plan ahead with what accessories your husband will be needing such as walker, scooter, wheel chair, bath tub chair, bath tub rail, accomodating bed and/or mattress, etc. It can seem so overwhelming, I know. This is why my family did not address these things until we had to, and we really burried ourselves in a hole by doing that. Don't make the same mistake we did. Try to stay ahead of the disease if you can. Easier said than done, huh?
Dana
 

MarciaA

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MN
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John,
You mentioned that you can take your van to work, shopping, etc. with your scooter. How do you manage getting into and out of your scooter and how do you manage to work the gas and break of your van? Are there additional modifications made to the van? My sister is looking into getting a new car. She currently has a stick shift and isn't ready to take the plunge into a wheelchair accessible van yet, but is looking into an automatic car out of safety reasons since her left hand is weak. Any tips, hints, and/or advice?

Dana,
You mentioned about an accomodating bed and/or mattress. Does your father have a hospital bed or is there another option that works better?

Marcia
 

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,028
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
MarciaA said:
John,
You mentioned that you can take your van to work, shopping, etc. with your scooter. How do you manage getting into and out of your scooter and how do you manage to work the gas and break of your van? Are there additional modifications made to the van? My sister is looking into getting a new car. She currently has a stick shift and isn't ready to take the plunge into a wheelchair accessible van yet, but is looking into an automatic car out of safety reasons since her left hand is weak. Any tips, hints, and/or advice?
Marcia,
I can stand to transfer and use a walker for short distances about the house but generally use a scooter. I have had the armrests removed from the front seats in the van to increase the space between the front seats. I drive aboard, hold onto the seats and step through between the seats to the driver's seat. I forgot to mention that the car came equipped with manual controls. The previous owner was a quadriplegic. This consists of a lever coming out by the left side of the wheel attached to both the brake and the accelerator. Although I have pretty good leg strength to push, the manual brake is so easy to use I generally use that. I have no problem to run the accelerator with my foot. It takes very little pressure of course. One can ignore the manual controls and drive it regularly as well so it is convenient for able-bodied drivers although one tried the manual brake and commented that it was so easy and convenient he didn't know why all cars weren't designed that way. Manual controls are inexpensive and easy to retrofit to any car. If your sister's problem is only a weak left hand at the moment I'm not clear why a stick-shift is a problem unless it makes it difficult to steer with her left while shifting. One device that might help her in that case is a spinner knob. That also came with my van and is very helpful for one handed steering. Again, any disabled dealer should be able to provide that at low cost. And also again, I've had people remark when driving my car how much they like it.
 

ladave

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Feb 12, 2006
Messages
136
John-

Thanks for the information about your van. Talking about the ironies life throws at us, just six months before my diagnosed. I decided at age 49 it was time I finally stopped being so cost-conscious about my car buying and bought my "dream" car, a 2005 Cadillac SRX. Now here I am owing all that money on a car I thought I'd be driving for the next five years at least; wondering how long I'll be able physically to keep driving it. Ah well, at least I won't go to my grave wondering why I never bought the car I really wanted:)
 

Al

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Joined
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Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hey Dave when I was first diagnosed my family doctor told me to make a list of the things I wanted to do and start doing them. I went skydiving went to Cuba and went to see the Grand Canyon. You got the car you always wanted. Different people different pleasures. You're as happy as a pig in dung driving it now so live for the moment. Who knows how long you'll be able to drive? Just be happy as long as you can and if you die before it's paid for well then I hope you bought the life insurance on the loan and if not well you won't have to worry about it. LOL.
 

dana

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Messages
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My dad bought a 06 blue convertable Corvette this last summer and has only driven it no more than five times. Now that he is on the ventilator, he will not be able to ever drive it again. Wednesday was my birthday, and my dad wanted me to take it out to dinner. I did and it was a lot of fun. My husband drove it to work the next day and brought it back to my dad. His exact words were, "Boy, that car is BITCHIN!" My dad grinned from ear to ear. My husband then told him that it was still running in perfect condition so whenever my dad is ready, my hubby will take him for a ride. That meant a lot to me and my dad. Even though he can't drive it anymore, he still gets bragging rights by having others drive his precious baby.


Marcia,
My dad currently has a hospital bed. Dad needed a bed that would tilt up because he couldn't breath when lying flat. This can happen as the diaphram starts to weaken. I have heard of people getting a foam wedge to tilt them up too. My dad tried that, but it didn't work for him.
 
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