My New Life

Hi , I think you can still have a good life. The infusions are amazing and have been a great help to community members, and there are so many helpful things on the horizon. I am so glad that you have a wonderful friend to help you.

Our friend is a wiz at finding home help for times when her husband is working. And our friend helps lead support groups locally, and has so much useful information and wonderful resources and suggestions.

Just for your own peace of mind, have you explored assisted living facilities near you? You don't ever have to go, but it might give you some peace of mind to know there is a place available where you would be comfortable. You can visit and talk to staff and residents to get a real feel. Please know we're always here for support. - Warmly, Donna (Team Member)

I had the same concerns when I was I was diagnosed almost 4 years ago. At that time, there was little they could do for me except prescribe me Aricept.

So, let me assuage your fears; at least some.

First and foremost - YOU are going to be OK. YOU are not going to forget everything including your loved ones. YOU are not going to have pain with this; except for pokes into your veins and things like that. And, YOU ARE NOT going to be a burden to others.

There are now drugs available for people like you, and me. The two primary ones are Leqembi (which I am on) and Kisunla. What you need to do now is find a neurologist that can prescribe those or similar drugs. You might start with your local physician and ask for a referral. If they are hesitant, keep looking until you find a doctor who will do that.

Now, let me add to what Donna said about our support groups. After I was initially diagnosed, my neurologist asked My wife, Starr, and me to start one. We knew nothing about leading something like that. But, now, we lead three groups who we meet with each month.

The first group is for those trying to get on a drug. They come to a meeting with other patients who are already on them. Those on a drug can answer questions for people new to the group and, as with you, assure them this is going to be OK as they are doing fine.

The second group is composed of those in the first group plus all the others that are on a drug. We typically divide into two groups. The patients are one and the support people are the other. I take the patients and my wife takes the support people. We meet for an hour and then bring everyone back together for announcements from the hospital staff on potential new drugs or treatments, what is in the development stage, and other things.

The last group arrives just prior to the announcements so they can hear them. Once the announcements are over, we meet with them.

These are patients who do not, at this time, qualify for a drug.

As you can tell, the key words are "at this time." That means that while there is nothing available for them today, it does not mean there will not be something in available for them in the very near future.

The people in our support groups are aware that there are lots of new drugs and treatments in the development stage right now. If you do some digging, you can find information on some of those.

As you can see, this is not something we want to get but it is something we can live a very full an fun life with.

Finally - God has got this! And, God has got you!

Oh - and a favor - please contact me if you have any questions.

I also look forward to hearing that in a few years you are still having a wonderful life full of friends and family!

Adjusting to a new routine can take time, and having supportive people around you can make the changes feel a little more manageable.