Trying to get prepared

[happygardener]

I am so frustrated ...
My husband has been diagonsed with als back in august but has had many symptoms for the past year.Along with trying to deal with the prospect of losing the love of my live,soulmate and father of my kids I am told to be strong and prepare ahead.I am trying but cant seen to make any progress.We are on a waiting list to get into the als clinic(where I need prescriptions and referals to get any equiptment that I may need) I have made daily calls to the neuoligist(who is very kind0 but it seens as if somethting tragic has to happened before my husband gets seen.He has been chockingand i managed to get in with a physical therapist who was totally useless.I want to give my husband the very best care along with maintaining his dignity with this illness.I have been given a manual and have been told take it day by day..I never realized what a crappy medical system we have..wait..wait ..wait...not to mention noody can really tell me wahts next ..except for ..everyone is different....

 

[CAHPAH]

Happygrdener
I feel your frustration. ALS does effect everyone differently as far as which muscle group it attaches first and how quicky they are effected. Perhaps it will help if I share a little of our journey through ALS. The first year ALS took away the use of my wife's hands. As this progressed we used many differant tools to help her, page turners, spoon hoders, hand braces..there are a lot of things available. Eventualy she lost all use of her hands and arms. The next two years ALS worked on her diaphram. She lost 5% of her FVC every month for 14 straight months. When she got to 50% we got a bi-pap which took her a couple of months to get used to. One of the side effects of elevated CO2 levels can be weight loss and she got down to 98 pounds when she started using the bi-pap full time. She is now 126 lb. When she started having trouble breathing with the bi-pap we switched to a Triolgy 100. Over the last year ALS has worked over her legs. She does not walk anymore but can still stand enough to transfer from her bed to a chair. To help with this we now have a companion chair, wheel chair, lift recliner chair and our newest addition is a bath lift chair that lowers her into the bath tub. We are starting to learn about Hoyler lifts since that will be the next step. My point here is you are your husbands greatest advocate. Try to watch how ALS is effecting him and find out what is available to help before he needs it. I think you will find the forum helpful in that respect. Stay on top of the doctors and your medical system. Often that can be a real fight. Don't be shy about asking for help where ever you can find it.

The hardest lesson I had to learn was not to get so wrapped up in fighting ALS that you forget to enjoy the realationship with your spouse. I am lucky that Serana's ALS has been slow because I am a little slow myself and it took me awhile to reach the point where ALS is not front and center any more. I am finally back to Serena being the important thing and not her ALS, if that makes any sense.

My very best hopes and wishes for you.
Jim

 

[happygardener]

Happygrdener
I feel your frustration. ALS does effect everyone differently as far as which muscle group it attaches first and how quicky they are effected. Perhaps it will help if I share a little of our journey through ALS. The first year ALS took away the use of my wife's hands. As this progressed we used many differant tools to help her, page turners, spoon hoders, hand braces..there are a lot of things available. Eventualy she lost all use of her hands and arms. The next two years ALS worked on her diaphram. She lost 5% of her FVC every month for 14 straight months. When she got to 50% we got a bi-pap which took her a couple of months to get used to. One of the side effects of elevated CO2 levels can be weight loss and she got down to 98 pounds when she started using the bi-pap full time. She is now 126 lb. When she started having trouble breathing with the bi-pap we switched to a Triolgy 100. Over the last year ALS has worked over her legs. She does not walk anymore but can still stand enough to transfer from her bed to a chair. To help with this we now have a companion chair, wheel chair, lift recliner chair and our newest addition is a bath lift chair that lowers her into the bath tub. We are starting to learn about Hoyler lifts since that will be the next step. My point here is you are your husbands greatest advocate. Try to watch how ALS is effecting him and find out what is available to help before he needs it. I think you will find the forum helpful in that respect. Stay on top of the doctors and your medical system. Often that can be a real fight. Don't be shy about asking for help where ever you can find it.

The hardest lesson I had to learn was not to get so wrapped up in fighting ALS that you forget to enjoy the realationship with your spouse. I am lucky that Serana's ALS has been slow because I am a little slow myself and it took me awhile to reach the point where ALS is not front and center any more. I am finally back to Serena being the important thing and not her ALS, if that makes any sense.

My very best hopes and wishes for you.
Jim

Thank you..I am better than I was in the beginning..we are closer than ever and I am trying to be first and foremost his loving wife..just there to help as he needs it.(but totally ready to take over when i must)This fourm has been great.I have been reading posts since this summer and have learned more than from any text book!

 

[Katie C]

Honestly in this case it really isn't the healthcare system so much as the disease itself... it's different for each person, nobody really has the same set of symptoms and the doctors and others have to take it one day at a time just like the rest of us.

OK, now to the more practical: PT isn't going to help you much with choking. Try to get an appointment with a speech therapist. She will also be the one to help you with speech assist devices. Probably your next purchase needs to be a VitaMix or other heavy duty blender so you can start pureeing foods. Also, Thickit or other beverage thickener...I know it seems counterintuitive, but thinner liquids are easier to choke on. It's because the swallowing muscles respond too slowly to control water or other thin beverages. No joke: one of Glen's favorite meals towards the end was pureed pizza and thickened beer!

Take it one day at a time, but do try to read all the information that's been given...keeping in mind your path WILL be different.