Cerebellum Atrophy

Dear Liz,
I haven't heard from you in a long time!!! Just a note to tell you that we are now living in Homer, Alaska. We are in our rainy season and it's cloudy and overcast almost every day. It is depressing but we have bought a special light that Alaskans sit under to give sunlight and stop any depression which can happen. We will only get 4 hours of sunshine during the month of December. This will be our first winter here. We have sold our home in Michigan and will be living here full time. At least our daughter and family are only two hours away from us. She has 3 children and we enjoy going to their music recitals. I envy you living in S. Africa which is warm.
How are you doing? Have you progressed in the cerebral atrophy? My husband is still walking with a walker but sometimes he will get dizzy and just fall backwards. I do have trouble understanding him but he is patient and will repeat what he says. He still can bathe himself and we have a walk-in shower that we have a stool in. I also use the stool as I have a bad back that gives me pain. It's the pits getting old!!! It is not for sissies.
I would love to write to you and send you a postcard from Alaska. I don't know if you can post your address! But you could leave it at my email address.
Thinking of you,
Noreen ( wife of HowardJames)

@howardjames , we go back to the Mayo Clinic to find out his Large panel testing results on Nov. 6th, wouldn't tell us anything over the phone..pretty nervous

Hi Lisa,
I'd like to bring @fernandavidigal and @jennsprung into this discussion. They each have a child with rare genetic disorders and have had genomic testing done. They will certainly be able to relate to the stress of waiting for results, and may be able to shed some light on how long they had to wait and how they coped. You might like to read more about these discussions to connect with other parents of children with special needs.
https://connect.mayoclinic.org/discussion/anyone-with-keutel-syndrome/
https://connect.mayoclinic.org/discussion/mother-of-special-need-children-losing-her-mind/

I, too, think that the whole Mayo system does a poor job of pushing the patients' calendars along. I went there for a two week visit to find the root of my problems, which has been a long term bout with Amyloidosis. I did a few other tests, none of which made any sense to me, but I am not very knowledgeable in these things. After over 100 days of expense and corporate excuses, I finally got to see a hematologist. And almost a year later, I still do not have a straight answer. Hang in there, and be hopeful.

@lisapraska

I am sorry for the wait. Could you ask to be put on a wait list in case an earlier appointment becomes available?

Teresa

They couldn't tell me anything over the phone.

Hello Lisa @lisapraska

I can only imagine what a difficult time this must be for you and your family. I cannot answer the question as to why the wait is so long. Have you spoke with the department that does the genomic testing? Perhaps they can provide you some reason for the long wait.

I'm going to invite, @colleenyoung, into this discussion as well. Perhaps she can shed some light on this.

Teresa

@hopeful33250, my son's geonomic results are in from his Large panel testing we have to go back to the Mayo for the results on November 6th, why is there such a long wait? I think the wait is intense and very stressful. Also I was told before the large panel came back, if the results are not good we would be called back to the clinic for the results. This is a very stressful time for our family.

Hello Lisa, @lisapraska

It looks like you may have started a post to me. You can try again if you got interrupted.

Teresa

@hopeful33250