When there is a rock in our path, we can stumble over it or use it as a stepping stone.

Saturday, July 30, 2011

Living with Two Rare Diseases

Daily life with progressing "idiopathic dementia" is interesting in and of itself.   When you throw another rare disease (Osteogenesis Imperfecta) into the mix, it guarantees that your life will never be boring.   

Courtesy of the dementia, I do things such as walk into walls, lose my balance and even pass out at the drop of a hat when my blood pressure suddenly plummets (my body has problems autoregulating in several areas).     Thanks to the Osteogenesis Imperfecta (OI), I was in essence born with osteoporosis which years ago progressed to severe osteoporosis. It is not uncommon for me to fracture with little stress, just normal use of a limb.   The added falls from the dementia simply increase my risk of fractures and other injuries.

As part of the OI, I have had scoliosis since I was a young child.   About a year ago, one of my falls from passing out when my blood pressure dropped suddenly caused me to further injure my back.   I am now so crooked that my right shoulder is several inches higher than my left and in constant pain anytime I am doing anything other than sitting and resting my back against some type of support.     X-rays show that the arthritis in my back is also increasing.    Height measurement at the doctor's office last week shows I am down to 4' 7 1/2", which means I have lost two inches in the past year - a combination of the additional back injury and further compression of my spine.

Due to the repeated injuries from the OI throughout my life (I have had over 70 fractures), I have arthritis in a variety of places in my body and bone scans show that I have lost a lot of bone in the ball and socket joints in both hips and will need both replaced if I live long enough.

How does this impact my dementia?   It reduces further my ability to be active, and remaining as active as possible for as long as possible has been shown to slow down the progression of dementias by keeping our brains stimulated and continuing to build new pathways to replace what is being lost.    On days like today when my carpal tunnel* is acting up, it reduces my online time and 98% of my social life is online since I am primarily homebound and often go a month or more with no in person contact with anyone other than my roommate/caretaker.

*OI is in essence a collagen deficiency disease.  It means that any system in my body that is dependent on collagen is going to be weakened thus I am much more susceptible to things like carpal tunnel also.

My comment on Twitter yesterday sums up what life with dementia and OI is like for me:   "Two things get me through each day, my gratitude practice and humor - being thankful for what goes right and able to laugh at what does not."


Dolores said...

Thank you so much for your thoughts and opinions on my blog post about the things that I miss from my husband.

I totally agree with everything you said! My best friend and I have often said how glad we are that David doesn't worry about the 'little/un-important' things in life........

Thanks so much for sharing your story with me. I'm so sorry you're going through this too. It sure helps to share our 'stuff' with one another.
Blessings to you!

Stumblinn said...

Thank you for coming to visit my blog. I am glad you found my comment on your husband's situation useful.

A post topic I have in mind to write on at some point, perhaps later this week, is that I am not a dementia sufferer or a victim. I live with a dementia diagnosis. I have no control over my diagnosis, but I have full control over my attitude towards it. I am hoping that my posts will show both the ups and downs of life with dementia so that those who are not living with it (and even those who have the same diagnosis but are earlier in their journey) can see a dementia diagnosis doesn't have to take all the joy out of life. It does require creativity and patience on the part of both patient and caregiver but with a change in perspective and expectations, there can be continued joy in life.

May you find much joy also as you share your husband's ongoing journey. I know there will be rough times, but I wish you many good ones.

Dolores said...

That will be a great topic to discuss! I'm certainly not in your shoes, but from my perspective, you sound like you're doing really well.

I started my blog about David over 2 years ago for the reason of trying to show something positive about life with Alzheimer's or dementia.

When he was first diagnosed, everything I read was so dis-heartening and negative. I decided my blog would be as positive as possible.... I try to be positive in my post, but ever so often...... I let it all hang out.
I wish you many good days too...
Blessings to you,

Stumblinn said...

Thank you so much, Dolores.

I fully understand what you said about "I try to be positive in my post, but ever so often...... I let it all hang out." Yes, focusing on the positive is important, but we are all human and some days things can become overwhelming and we need to share that also - both for the sake of our own mental health and to allow others a chance to support us.