Ajcee: yes, genetics. I often speak of them.

Bruce is from strong farm stock, still he lost his Mom at 62 and his Dad at 65. He often said to me, I do not have a long life in my future. Still his beloved Uncle Rene lived until 92, still running the family farm. And in Rene's case, it was a broken heart and he gave up.

Bruce will definitely out live me. Lost my Dad at 55 due to heart disease and a cogenital defect. I am free of that, but beloved sister and brother inherited it. Mom held out until 72 even with having to raise 7 children after Dad passed.

Still Bruce stopped smoking and drinking after the stroke and even developing Diabetes lately, his diet is controlled. Not so much me. And really, that is OK.

My dream is to go out into the backyard with a bottle of vodka, my cigarettes, my afghan and an nice lawn chair, watching the sunset. A lovely way to go.

Enjoy now the gifts you have been given. All those things that you still love and are capable of doing. Get out each and every day and enjoy fresh air and sunshine. Smile at your neighbors and wave. Relish fresh fruits and vegetables when they are available. Laugh often, love always. And know, you will leave a legacy. Debbie

AJ, In my experience with this stroke for the last ten years the body does change and you tend to get better in physical activities or at least I did since I was 62 years old when the stroke came calling my name!!

Now at 73 I am doing better and not much has changed or things I can not do except standing up from a low chair!! I know that comes from my arthritis condition in my knees!! I am just enjoying life with my wife and when God calls I will try to be ready. I thank Him now for making me a survivor from this stroke!!

hi ajcee, I read your blog with interest as I feel I am headed where you are and beyond. I have had 3 -and possibly 4- mild strokes so far in the past two years. what is most disturbing is the diagnosis of cerebral small vessel disease. this is when your arteries get successively plugged until they close or a small plaque closes them. I don't see anything stopping this process and if I believe that the medicines I am taking are doing anything -asprin, bp and statin- I would probably also believe in the tooth fairy and easter bunny.

thus I expect that i'll be where you are and beyond unless something takes me out quick and as I am a vegan I have unfortunately reduced that possibility. i do like Debbie's suggestion, back yard, vodka, cigarettes afghan lawn chair, sunset, .... nice!

i also like Debbie's suggestion of "the now..." coupled with an acceptance of the expected continued deterioration.

my best wishes to you my friend. you are showing us the way from the inside out.

david

Hi follys,

I too have cerebral small vessel disease and certainly as age reduces cerebral volume, further occlusion may result. I imagine this is not an uncommon finding in MRI studies of the aged. I'm surprised you don't mention the taking of a blood thinner other than aspirin, such as Plavix or coumadin. Perhaps there is a good reason your neurologist has you only on aspirin as your condition may not be as dire as you imagine. 71 is not so old and being a vegan should add many years to your life

I was 74 when my stroke occurred and one MRI report stated that the cause was an occlusion of the right vertebral artery which can be traced to a congenital defect of it being too narrow .I have actually seen twelve neurologists in the past 12 years with varying views other than a mutual agreement that there is not a prognosis of improvement for my condition.

I should have accepted their consensus of opinion, but foolishly placed my trust in a highly recommended neurologist without obtaining a second opinion until after undergoing a gentamycin procedure of my right vestibular nerve, which intensified my vertigo and loss of balance leaving me in a constant state of dizziness and inability to drive, and housebound.

While I enjoyed my martinis and cigarettes in the past, the cigarettes are the cause of my C.O.P.D and alcohol will just lead to further dizziness.

As bad as my condition may be, there are many on this board in worse condition than I, with true fighting spirit. I haven't fully given up, and will be evaluated by a neurosurgeon in 4 weeks to determine if brain surgery is warranted to fenestrate a cyst to ameliorate a sudden increase in my symptoms.

I wish you well and enjoy your presence on this board!

AJ

hi aj

on my last visit to timothy - neurologist - I did ask him about Coumadin and he said I did not have any of the characteristics to warrant it. ie afb. we did gobs of tests after my second stroke. stayed in hospital 4 days. found nothing. pity! myself since my strokes have all been mild I think it is unlikely that a clot is formed somewhere else and then finds the small artery in center of brain to block. my feeling is that traveling clots are probably large and would plug a larger artery. googling Plavix and multiple strokes did not turn up anything very encouraging suggesting that its advantage over aspirin seems to be really a toss up.

I do agree 71 is not very old unless you are having a stroke every 8 months. this is both annoying and anxiety producing.

can I ask how many small strokes that you have had and if you take something other than aspirin do you think it has helped?

I have noted with extreme interest your reference to the jaha oct 2013 article on fish and multiple strokes. as a result of that I now have 3.5 oz tuna or salmon 3 - 4 times per week. it is the only study that I am aware of that has showed a positive affect on multiple strokes. the down side is that I am a vegan (apart from the recent addition of fish which I consider to be medicine) and that the population of the study probably had few if any vegans in it. and so do the results apply to vegans? I did contact the author and asked him about whether vegans would also have the frequency of strokes as the normal population. he seemed to appreciate the question but commented that this is rather unknown. my feeling is that my condition is genetic and both not diet related nor diet sensitive. hopefully I am wrong!

on the other side there seems to be some chemical reason to suspect that pufas do good things and so my hope is that they will also do good things to david.

the negative evidence is that I started fish on may 16 and then on june 21 my ability to swallow suddenly changed. like from morning to evening. in morning I was able to eat bread, in evening I gagged on bread. did the barium swallow (an impressive piece of diagnostics) showing that my swallow was like a aging 71 year old. will have an mri in near future to see if as I suspect this was the result of another small stroke. if so it hasn't boded well for my diet change. but I do continue with my fish.--have actually cut down from 3.5 oz every day to 3.5oz every other day. again I think we are in tooth fairy land.

a last note. "the plover" a recent book that if you are reading your last book this should be the one since I am afraid that succeeding books will not compare favorably with this. I am half way through and like both the thoughts and the writing.

take care my friend, and I truly hope that you never fully give up.

david

When my hubby stroked in Feb 2012, he was only 59, and no one said a word to me about it, but after ordering all his medical records, I read in them that he has white matter disease.

hi sandy,

I think its a catch all phrase for radiologists. my first stroke was diagnosed as "consistent with" cerebral small vessel disease. the distinction between this and white matter disease is not real clear to me and it would not be out of place to ask your dr to explain it to you.

after my 3 strokes they no longer said "consistent with".

one of the ways they have of determining this is by counting the little white dots and above a certain number they say cerebral small vessel disease.(I do encourage others in reading this to correct what I have said)

the other indication of white matter disease is a diffuse -white- background in the central region of the brain.

why this region is important apart from any motor neurons that may be affected is that it is the central region that all of the axons from the left to right part of the brain must go and a lot of our activity involves one side of the brain requiring information from the other side. my example - for myself - is when I try to think of a persons name or a word I believe the two sides must communicate and if a link passes through the stroke region it can't use this(easy)link and must find another way and as this is not "easy" it takes a lot of time. this is my "classic comic book" model for myself sandy but it helps me understand some of the things that I have trouble doing.

the real dilemma is that they think of small vessel disease as a narrowing of the small arteries without having any way of measuring the fact that they are narrowing or not. this does not seem to bother them but it does me. however in all fairness this is something that can't be measured with current technology and so they look for the effect to deduce the cause. my background causes me great difficulty with the last statement(lol).

and the bottom line seems to me to be that there is nothing to be done about it anyway.

I have rambled too long!

take care and kind wishes to you both sandy and bob

david

I enjoyed reading this thread. I had my stroke when i was 53 years old, was never told what cause it , my blood pressure was very high and I have high blood sugar ( I am a Type 2) I used to be so mad at the doctors, because I had two TIA,s and would tell them I had tingling, and bad heachaches. no one listen, after I had the stroke was told that it was my fault! Now , I feel I am blessed, phyiscal I have made a great recovery, mental not so well, but it could be worse. My father had two strokes, but you would not know it, and he is 85years old and so sharp! I have an aunt who is 95years old, she is sharp as a button, lives by her self and keeps a clean house!

I understand about you not wanting to live and be aburden on any one, but it is what it is. I have my faith and it is up to God when he comes and tells me time up. Till then I plan to enjoy every day, and know that I am blessed.

Blessings to you both, and you Sandy doing a great job

Yvonne

Yvonne: I was just thinking exactly what you responded. I thoroughly enjoyed reading this thread. The investigation, questions, researching. While frustrating, certainly, accepting and the willingness to share with the rest of us. Thank you gentlemen.

Oh, and just for the record: my idea of vodka, cigarettes, lawn chair, afghan and sunset were personal to me. I was not advocating for anyone else. Debbie

David,

When I first got my stroke, I was put on a regimen of coumadin, which necessitated frequent testing and minimizing foods containing vitamin K in my diet. A year later, I was switched to Plavix, plus 81 mg of aspirin, when I was diagnosed with angina and had stents placed in my heart. While this didn't require routine testing and diet restriction, the fact is that it is also a blood thinner, which means risk of hemorrhaging and ugly hematomas occurring with the slightest bump.

I can't say that taking a blood thinner has prevented further strokes, but since all of my doctors agree that I should stay on Plavix, especially with the addition of my heart problem ( I also have atherosclerosis and had blood clots in my legs in the past), I have little choice but to continue this regimen.

Is your aspirin dosage 81 mg or 325 mg?

Several decades ago,, a patient for the most part, rarely saw another practitioner other than his GP, and had little idea about what was going on under his/her skin. Cat scans and MRIs didn't exist, nor the advertisements regarding erectile dysfunction or vaginal infections. Indeed, cancer, the big “C”,was rarely mentioned except to the closest relatives in whispers. Certainly, medicine has made great strides since, but with each step forward, we learn how much more remains unknown,

Today, primary physicians refer their patients to an endless stream of specialists, who in turn refer their patients to an endless battery of testing on the latest diagnosing equipment, which is shortly outmoded.

Radiation exposure is accountable for over-exposure leading to an increase in cancer rates. Medical expenses mount, eating up a progressively large portion of one's income. The media screams out new findings by the AMA and FDA, only to have them later contradicted.

One's confidence in his/her physician is reduced as measures suggested for health preservation leave the practitioner confused with later contradictory findings. We scour the internet looking for guidance, some of which is helpful, but much of which adds to our confusion and much of which is snake -oil peddling.

Sometimes, I wish for the buggy days of GPs making house calls!

It is interesting reading this thread since you and Folly seem to have a lot of experience and research in your health issues. Larry's PCP is a good doctor, but he only knows so much, and has sent Larry to numerous specialists and testing. But I always wondered just how much these specialists even knew.

When Larry had his stroke, his left carotid artery was occluded and right 60% blocked. The vascular surgeon was confused as his left side was affected not the right side, as is the norm. He wanted to wait for Larry to recover for 6 weeks and then do a stent on the right carotid. I wondered if he was waiting to see "if" he recovered. I chose to get a second opinion and the surgeon at another facility said he would not recommend the surgery at that time. He did not believe Larry's stroke occured from the left occluded artery but could maybe be something in the brain causing it. Since there was such a risk, we waited. Now 4 1/2 years later we still go back for the carotid dopplar scan. With no more movement in the artery, he will not do surgery.

Also, we recently changed urologists. I won't go into details of his past problem. One thing the old uro said Larry did not need to do anymore PSA testing. His reason was Larry's age factor - 70. The new uro disagreed and said he should have it. He said lot of this thinking has to do with the gov't saying yearly mammograms are not needed, etc. I also think it is good to know first hand if there is cancer.

We have been to so many specialists. I have wondered about taking Larry to a nuero but my experience with one left me thinking it was a waste of time.

I wish you both well in your recovery. You have done a lot in your research.

Julie

aj

I am taking 325 mg of aspirin but am a little skeptical about the efficacy of this in preventing my type to strokes. I think that if your stroke occurred as a result of blood clot the aspirin doesn't allow the blood to clot in the first place and hence it works. I think that if your stroke occurred by a moving piece of plaque that plugs the artery the aspirin probably doesn't do very much. and finally if you stroke occurs simply because the artery diameter finally reached zero aspirin of little help. I think I am likely in third case but perhaps in the second and unlikely in the first.

I was a little troubled aj by your statement that the atrophy of the brain (which I also have, but so did Einstein and so we are in good company(lol)) somehow is responsible for the narrowing of the small arteries. the model I get from neuros is that it is inflammation that causes the narrowing. it is certainly sensible but whether correct or not we will only know at a much later date at which time we will be only memories.

I have had my mri today to see if stroke was the cause of my swallowing difficulty which other than not being able to eat rasberries causes me little grief. i have no doubt of the outcome but am kind of curious to see in what region this stroke(if present) occurred.

why i am continuing to have mri's is a bit of a puzzle to me. further strokes will appear as little dots and there is nothing to be done to slow the progress of this deterioration other than what i have already done. its probably time to get into the acceptance phase and move on into my back yard with my bottle of vodka and afghan!

david

hi Julie i read with interest your comments particular that relating to prostrate cancer. aj can probably tell you a lot more than i can. i was told many years ago by a dr who i considered quite bright that there is two types of prostrate cancer. the first is very slowly growing and your eventual death will be from something else. the second is rapidly growing and essentially nothing you do will change the outcome. and hence i do not do any prostrate testing (including PSA).

i am not sure how disappointed i would be to find out that i had type two and would not die in the multiple stroke scenario. it a toss up but fortunately i won't get to choose either which one or whether i will die(lol).

david

Hi Julie,

A man aged fifty or older should have a yearly rectal digital exam included in his physical. This is to determine if there is any evidence of a growth on the prostate. Unfortunately, only the upper side of the prostate is reachable, leaving the underside unknown.

There has been a lot of coverage in the media lately, as to whether PSA testing is called for. Urologists are split on this subject, as evidenced by your husband's recent visits with two urologists. If there is a family history of prostate cancer, then a PSA should definitely be done. To add to the confusion, PSA results are not always reliable, but if there is a high reading, it should be followed up with another testing for accuracy.

Prostate cancer is commonly found in males over 50, and the percentage increases with age. Much of the controversy has to do with most cancers being slow growing and less likely to cause death before another illness steps in. I do think it is a good idea to have a PSA test done to alleviate any concern, at least every three years.

In my case, a growth was detected with a digital exam, followed by a biopsy of the region, which proved to be cancerous. (The biopsy reading on the Gleason Scale was 7, which is moderate and calls for treatment, Readings under 4 are low grade and watched regularly, but often not life threatening. Readings of 8 – 10 are life threatening.) I was put on a brief intake of hormone tablets, followed by 40 external xray treatments (there are several treatment options to choose from). I was 75 years old at the time, and was in remission for eight years. Follow up included semi annual PSA tests and check ups.

PSA readings of no concern are usually measured in tenths. After my xray therapy, my reading was 0.1. However, on recurrence it went as high as 7.0 at which time I was put on a regimen of hormone therapy with a drug called Lupron, which was injected every three months for a year. The drug has terrible side effects, but it brought my PSA down to 0.4. It is now 0.9, and I expect it to keep climbing and having to take Lupron again. Eventually, a resistance to the drug is developed, at which time chemotherapy becomes a consideration. I have an adverse reaction to most medications, especially those that may cause dizziness, because of my vertigo condition, and doubt if I would consider it as an option.

I think I have given you a good bird's eye view of prostate cancer, but remember I am not a physician and can only speak from my experience as a patient. I think choosing to have a PSA for your husband will be a wise choice, and hopefully will have good results to reduce his anxiety. He has enough to cope with his stroke condition. Good luck to both of you.

AJ