thewife wrote:...priority of the moment is my husband. His mom and grandmother had/has Alzheimer's but he has been diagnosed over his lifetime with Cerebral Palsy. He has another diagnosis recently of Cerebellar Atrophy which might be putting the first diagnosis in question despite the longevity. His currently rapidly increasing symptoms seem to match neither.... things are getting worse and docs give us options like spinal taps/steroids/etc. with little chance that these will help. There is no recommendation of other strategies (as a matter of fact the specialist we saw wanted to take him off of all vitamins/supplements) and really a general belief that there is nothing to do to help....resources are tight... At the moment we are looking for a provider that might be helpful, ideas for coping, ideas for thriving as long as possible, etc. Thanks much.
A long hug from another wife, who knows what it means to suddenly have the new "priority of the moment" be your husband
I am no expert in Cerebellar Atrophy, but spent my educational career meeting and cherishing the courage, resourcefulness and often sly humor of kids with CP (and kids with other unique differences.) So I know that CP is something of a catch-all term. Decades ago it was assumed to be caused by loss of oxygen during a difficult delivery. Later it was discovered that some kids with CP showed signs of perinatal clots or bleeding (which seems to happen in about 1-2% of births, somewhat more with preemies). More recently, with genome-wide testing, it seems that some cases of CP may be linked to mutations in DNA that either happen spontaneously or that are carried in some families. (Sort of how lots of people on this site knew they had Alzheimer's and heart disease in their families and only with 23&me discovered they had a genetic contributor to that pattern!)
So this is a bit of a wild guess, but I wonder if the neurologist thinks the effects have been the same as CP caused by birth injuries, but might have a genetic link which is now showing up with cerebellar atrophy.
More importantly: You and your husband have had years of experience learning how to adapt to his "CP". That will help you emotionally and physically deal with this new diagnosis. One way to frame this is that your husband's issues may involve new, and sometimes challenging motor symptoms while sparing the things that make him who he really is--his language, his memory of himself, his interests, his love for his family. Doesn't mean you wouldn't take a pass on this journey if you could! We are all in the waiting room of a "progressive" diagnosis of one sort or another. The Stoics say we cannot choose the outcome of our journey; we can only choose to prepare to the best of our ability and to seek meaning in the voyage.
So here are some more thoughts on "ideas for coping, ideas for thriving as long as possible":
1. Take a deep breath, lots of them!
2. Recognize that you and he are the same people you were before that diagnosis. You have time to each, in your own way, consider this news, grieve for the changes it is requiring now and might in the future, and remind yourselves of your well-honed coping skills, knowing that adjustments in life and advocacy for your needs makes a difference.
3. Start with small changes that will make life easier and don't cost much. Maybe you can agree that someone else can do some chores around the house and that day trips to see nature's beauty are as worthwhile as long drives.
4. Ask yourselves: What is important to me? What experiences do I want and what goals do I have? Dr. Atul Gawande's recent book "Being Mortal" is a wonderful guide to this.
5. Cerebellar atrophy is not nearly as common as Alzheimer's, although it is a feature of some cases of Alzheimer's and some of Parkinson's Disease and Progressive Supranuclear Palsy (PSP). The PSP Association PSP
may be a helpful resource, as they also address Multiple System Atrophy, sometimes used as an umbrella term including Cerebellar Atrophy. The Parkinson's Foundation Parkinson's Foundation
may also be helpful and has resource for financial and legal planning.
5.Advocate with your doctor for supportive therapies such as PT, which insurance should cover. If you need assistance, contact a representative for the Affordable Care Act and/or Medicaid. Your local UCP (United Cerebral Palsy) may have great support groups for adults, and access to pools for water-therapy, including hoyer lifts, if needed.
6. Tell your friends and family what specific things they can do to help. People want to be helpful; they just need to know "I need a coffee break once a week" or "We need a neighbor with a snowblower to help us out this winter."
We may not be a perfect fit for you, but we are definitely here for you, my friend.