Another new caregiver

[slm49]

Hello,
I've been trying to figure out how to post a question so hopefully this is the right place. My husband has been diagnosed with MND but so far there is no definitive diagnosis although it looks like this is what it is going to be. We are devastated and completely consumed with all of the changes etc....... that we are dealing with and everyday seems to bring new challenges. I've been reading many of your messages and already I feel like this will be a new home for me. thank you!
Sharon

 

[PDaddy]

Welcome Sharon, you came to the right place!

 

[brooksea]

Hi Sharon!

Sorry about your husband. Hopefully you will find answers to your questions and make new friends here.

 

[brendapals]

Welcome to our home Sharon,

Which do you prefer-cooking or cleaning? hahahaha
Just kidding, I try to keep life light from my end of the spectrum. You will find a lot of help here.
Keep the faith,
brenda

 

[kelly]

Hi Sharon,
There are alot of amazing caregivers on this site. Feel free to ask any questions, we are all in this together. Fondly, KR

 

[MtPockets]

Welcome

Sharon, welcome to the forum. I am sorry for the reason you had to seek us out. Feel free to jump in anywhere with any questions you may have. You can also use the search feature above to find specific things you may want to read about.

Like Brenda said we are just one big family here. I would have said Happy, but some days that does not work too well. We understand where you are with your emotions. We have all been there done that.

 

[hopingforthebest]

Welcome

Dear Sharon

I hope your husband does not have ALS but if he does, that his progression is very slow.
We are all basically going through very similar issues as you read all the posts. Some longer, some quicker but we, as caregivers, have a common ground coming to this forum, sharing our concerns for our loved one.

The people that answer your posts are the most caring wonderful people and my heart breaks for all of us.

Sometimes in the day to day care of our ALS patient, it is hard to find humor but you will laugh with others and other times cry as if you know them personally on this forum. For me, it is place where I can bear my soul and help carry the burden and pray for those in need.

We all welcome your questions, concerns and sharing!

Patty

 

[slm49]

Thank you to all of you for responding to my 1st posting. I am trying to find the time to read info on this forum b/c there is so much that will be very, very helpful. We have been having some bad days as we try to deal with this disease and I can't believe how terribly cruel it is. I cry watching Ron trying to do the simplest of tasks and I think that this is just the beginning! I am really going to need a lot of strength and help, especially from this community. So thank you again.
sharon

 

[Al]

Hi Sharon. Have you contacted the local ALS Society of Ontario chapter yet? They can help with support groups, equipment, advice and a lot of other things that I can't think of at the moment. Their site is www.alsont.ca Check it out if you haven't already. That's me in the top right of the home page. Are you seeing Dr Strong in London? He's in the top 3 or 4 Neuro's in the country.
AL.

 

[MtPockets]

Sharon, welcome to the forum. Please know you are not alone in what you are experiencing. Many of us have been through the same emotional roller coaster that you are now facing and we have made it out the other side. I'm not down playing what you are going to face, but just sharing that we can identify and help you along the way. We are here to help one another the best that we can through this ordeal.

Remember you are not alone.

 

[slm49]

Hi Al - thanks for your info. I did fax the registration forms to the ALS society on July 15 & we are waiting to hear something from them. I also called them on the 24th & left a message but still haven't heard anything so hopefully today they will call back plus I'll make another call. Another person I contacted is the support group leader here in London but I missed a meeting on the 21st. Our timing hasn't been great! I'll keep trying. There is so much going on right now since Ron just got his power wheelchair and now we need other equipment so I haven't had a lot of time to get things done. I haven't even had too much time to spend on this site. It was nice to see your picture; thank you for telling me who you are. I'll try to get on this site more often. Today I was trying to search for info on lift chairs and I clearly have not mastered the searching yet. Take care.
sharon

 

[MtPockets]

The MDA and ALS society can help sometimes with loaner chairs like the lift chair. If no luck with them try researching site's like this one:
http://www.la-z-boy.com/furniture/collections/power_recliners.aspx?action=Lift

 

[Al]

Hi Sharon. I had a lift chair on loan from ALS ONT. and have a walker, hospital bed, Hoyer lift and commode chair. Let me know if you don't hear from them soon. I might be able to call a friend for you.
AL.

 

[califsand]

Another good place to get equipment and financial help is the MDA (muscular distrophy association). They have a lot of resources for ALS patients and can purchase communication devices but often they have them in their loan closet. They have things set aside for ALS that are often untapped because we don't think of going to them for help since it is a different disease that they are known for. When in doubt, contact all of those organizations because they may have resources to send you to and in the end you may be able to get needed equipment for free from the various loan closets.

I'm glad you found us early on and hope that you will come here when you need to talk to someone who understands what you are going through. There is no shortage of wonderful people here who will give of themselves if that will help ease some of your struggles. This is also a great place if you need to vent and let all of the ugly feelings hang out, nobody judges you for being human, instead they just wrap you up in a warm hug full of understanding. It is a great resource for us all!

Take care,

Sandy

 

[slm49]

Once again, thank you everyone. I am trying to figure out how I send a private message to someone. When I try to find the required info it tells me that I am not authorized to do this? Is there somewhere that I go to ask questions about how to use this forum? I have been reading through the FAQs but can't find the answer to this.

Al - I will contact ALS Ont. Thanks.