new to board; help with blackouts and low BP


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new to board; help with blackouts and low BP

Postby RImike » Tue Jul 22, 2014 1:43 pm

HI thank you for proving this forum.
My father was diagnosed with CBD in June of '13. Starting in about April of '13 he began to have symptoms of 'alien limb' in his left arm. His primary caregiver is his second wife (bless her). I live on the east coast while they live in California. In january, he had episodes of low blood pressure that caused blackouts and a couple of falls. At that time we thought it might have been due to a urinary tract infection. I visited May of this year and he seemed to have fully recovered from the falls and the UTI. He was doing quite well, all things considered. I took him on several walks in the neighborhood twice a day (he can still walk on his own with a gait belt).
I visited again this month (july) and the episodes of low blood pressure and blackouts seem to be back. I am no doctor, but I think the low blood pressure is due to CBD. I guess it might not matter what it is due to, but is there anything that can be done to minimize this so that he is not such a fall risk? We already have him roll his ankles before he gets up and keep him hydrated, so I dont think any of the 'common' remedies are working. Also, his walking seems to be more labored now (he shuffles his left foot more) and he mentions more stiffness in his legs. he is in and out of bed several times a day. Is God on this board? IF so, can he or she let me know how much longer it will be before he can no longer walk? sorry that is my attempt at humor. Its just that none of the doctors we visit can tell us very much. Im hoping that the good people here might help.

Thanks.
RImike
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Re: new to board; help with blackouts and low BP

Postby zymurgy » Tue Jul 22, 2014 3:42 pm

Although Robin and Ed may know the answer, I thought there is neurogenic orthostatic hypotension which is a side effect of PD, etc. A relatively new drug, droxidopa, was approved for its treatment. Hope this helps. Zy
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Re: new to board; help with blackouts and low BP

Postby TAXED » Tue Jul 22, 2014 5:10 pm

Hello RImike, my wife has PSP diagnosed in Aug 2011, it took seven years to get a diagnosis so she is further along then expected for three years.

Last September (2013) for her 60th birthday we rented a house in Seaside, Oregon, and invited her family and lifelong girlfriends from California. At that time she was just beginning to transfer from the walker to a wheelchair. For example; she would use her walker around the house; although, she could walk around the house a little without it, it was just highly discouraged because of potential falls. She would use her walker in restaurants, and hold onto shopping carts in stores. Even for movie theaters the walker worked great. However; for any long outside walks we would use the wheelchair, they have a two mile promenade we would stroll. At that time a hand holding assist for walking worked OK too, so the wheelchair was used, just rarely.

Now one year later the same group are coming again. Today she can barely walk with full assistance, a professional would probably tell us to just use the wheelchair and other transfer equipment all the time. But it is so much easier if we are just going to the bathroom from the living room to help her walk. Especially in the middle of the nights to go to the bathroom. She wears a whistle to wake me up, or notify us that she needs help off her chair. I'm thinking soon we will need to buy a cammode to put next to the bed, as it will probably not be possible anymore soon to walk to the bathroom. I'm also thinking about hospice in the future as well? The doctors have recently told us six months to a year (no feeding tube is to be used).

On another note, for people that are just starting out researching PSP I like this video on Dudley Moore by Barbabra Roberts http://www.youtube.com/watch?v=VVWGutY0xbw. Kind of coincidental, or not, that my wife is progressing similar to his PSP. Moore was diagnosed in 1994 and died in March, 2002, approximately 8 years. This video was done in the fall of 1999, approximately 2.5 years prior to death. So you can see where he was in the fall of 1999; then in December of 2000 he was in a wheelchair when he gave a final interview (but was speaking) to the BBC; and in November 2001 Queen Elizabeth II gave him an award, at the time he could not speak. Again he passed in March 0f 2002. This is just one case; however, at least a point of reference.

Since I've seen lifespan estimates from 4 years to 20 years (one guy in Japan), I guess God is the only one that really knows.

P.S. For me I don't think people should judge caregivers that are interested in estimating lifespan; in fact, I love my wife dearly but for me it has been essential to prepare for what might be coming next.
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Re: new to board; help with blackouts and low BP

Postby Robin » Wed Jul 30, 2014 11:21 pm

Orthostatic hyppotension (OH) is not a symptom of CBD. It is a symptom of Parkinson's, Lewy Body Dementia, and Multiple System Atrophy.

I've never heard of alien limb occurring in PD, LBD, or MSA.

My total-layperson guess is that the orthostatic blood pressure issues your father is experiencing are either due to medication (dopaminergic meds can cause low BP) or age. Many older people have OH.

If your family is in Northern California, they are welcome to join our local support group.

Good luck,
Robin
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Re: new to board; help with blackouts and low BP

Postby RImike » Thu Jul 31, 2014 9:27 am

Thank you everyone for your responses. its just nice to know we are not alone in this..
He is not on any PD drugs. He did have a heart valve replaced a few years ago (?). he is 72 and never had OH before.. Anyway it seems that this 'symptom' is the one causing the most stress at the moment.. We have an appt with the cardiologist, so we'll see how that goes.

Robin, my family lives in Pismo Beach. They are unable to travel any distance, but if there is an online support group, I would love to have more information.
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Re: new to board; help with blackouts and low BP

Postby Robin » Fri Aug 01, 2014 11:23 pm

Yes, OH can be remarkably disabling. The MSA folks in our local support group suffer greatly from this.

OH can begin in one's 60s, 70s, or 80s. It's a very common problem among the elderly. This would be an excellent topic of discussion with the cardiologist!

There are online support groups specific to disorder, such as PSP. See the psp.org website for a list.
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Re: new to board; help with blackouts and low BP

Postby RImike » Mon Sep 29, 2014 3:49 pm

Thanks Robin I attended an online support group and it was very helpful. My thoughts and well wishes go out to all who are dealing with these diseases. My father is not doing well lately and is requiring almost constant attention. The main problem it seems is that he is so restless and anxious (??). he cant sit still for longer than a minute before he has to get up from lying down or sitting. He really cant walk now without someone there holding his gait belt even though he tries to walk on his own. Thus he has fallen 2 or 3 times in the past month maybe (the first time it required 9 stitches at the ER). the constant urge to pee also seems to contribute .. anyone else dealing with this or have any suggestions?
Thank you.
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